NO MEDICAL CONCLUSIONS OR TREATMENT OPTIONS SHOULD BE BASED UPON THE INFORMATION CONTAINED ON THIS PAGE.


Information contained herein has been provided by our members who are, or were, suffering with Hemifacial Spasm (HFS). It is intended as a quick overview of our membership -- not a formal study. It does not purport to include all treatments members may have undertaken. To correspond directly with a member identified on this page, click on the member's name. To post a question to the entire HFSA group, click here HFSA E-mail Group.

The proper course of treatment for any individual may vary from what is appropriate for other individuals, due to the actual condition and/or complications of that person. You should always consult your own medical team before proceeding with or deciding upon any course of treatment related to information presented on this website or elsewhere. It is understood that you need to visit with your own healthcare provider in order to reach a diagnosis for treatment.

To send an e-mail to any member listed on this page, click on the member's name.

Name
Location
HFS Side HFS Start Botox® Used Botox® Still Used MVD MVD # MVD Date MVD Doctor Spasm Free
  Comments or Post MVD Conditions
Rakefet Abou

Kiryat Bialik (Israel)
Left
2007
Yes
Yes
No





Botox Comments: Botox once, June 2009, it's becomming worse...helped alot, but makes my face a-simetry.
Lyn Abraham
Former Memb.
Toronto, Ontario (Canada)
Left
1986
Yes
No
Yes
1
10/01/03
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox from 1997-2003, 6 years. The first couple of years it was effective, now less and less effective, extremely dry eyes and post injection 10 days of an eye that did not close. I am waiting the nine months for it to wear off before surgery.

MVD Comments: Spasm free immediately after surgery. Had a rotten time with the anesthetic, caused extreme vertigo but that is improving daily. Dr. Kassam thought I would not likely have hearing in that ear, but that too is improving significantly. Had Bells Palsy about ten days out, that is all but gone. (Update provided 10/31/03).

Trudy Achenbach

Smyrna, DE (USA)
Right
2004
Yes
No
Yes
1
02/07/08
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Seems like the dose was not helping as much. Mouth was drooping-people were noticing.

MVD Comments: For details, click here to see my "MVD Diary.

Debbie Adams

Baltimore, MD (USA)
Left
2000
Yes
Yes
No





Botox Comments: I've only had to have 2 injections since my spasms started. For some pleasant reason, my spasms have gone away twice for 9 months at a time. Unfortunately, they haven't gone away this time.

MVD Comments: Was scheduled for MVD on 09/03/08 with Dr. Amin Kassam, UPMC, Pittsburgh, PA (USA), but cancelled surgery since spasms had stopped.

John Adams

Villa Park, IL (USA)
Left
2003
No

No






Kathy Adams

Rock Hill, SC (USA)
Right
1998
Yes
No
Yes
1
03/03/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox relieved some symptoms, created others. At one time entire side of face was drooped.

Click here to see my "Personal HFS History".

MVD Comments: Click here to see my "MVD Diary.

Gaurav Agarwal

Jamshedpur (India)
Right
2004
Yes
No
No





Botox Comments: Got Dyspot injection, right side of the face became totally stiff, the affected side, bad medicine.
Mohamad Ahmad

Abu Dhabi (United Arab Emirates)
Left
2004
No

No






Peter Alcivar

Somersworth, NH (USA)
Right
1998
Yes
No
No





Botox Comments: I tried Botox once at end of 2001. It was not totally effective at reducing HFS, and gave me a droopy upper lip. The side effects made me decide against trying it again.
Peggy Alcorn

Spokane, WA (USA)
Right
1998
Yes
No
No





Botox Comments: I have had various experiences over 12 years. But lately it is not working so well. I had my last injection 07/31/07. It did not take effect for about a month. My eye was almost closed and the spasm was very active. Since that time it has periods of quiet and then short periods of spasm.

MVD Comments: Scheduled for MVD Consultation on 04/14/08 with Dr. Robert Rostomily, Washington University, Seattle, WA (USA).

Joey Aldrich
Former Memb.
McCalla, AL (USA)
Right
2003
No

Yes
1
10/19/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes
MVD Comments: I'm "SPASM FREE"! The first 24 hours was not fun, nausea and headache, but it was all but gone on the second day along with my twitch!! For those of you contemplating MVD...I have NO regrets! Best decision I have ever made. For those of you scheduled...The Springhill Suites NorthShore is THE PLACE to stay. Wonderful rooms, great places to walk before and after surgery. Great restaurants with great music.
Sandra Aldrich

Richmond, VA (USA)
Left
2000
Yes
No
No





Botox Comments: It lasted only 3 weeks and left an asymetrical look for quite some time.
Joseph Aleksandrowicz
Former Memb.
Tel-aviv (Israel)
Left



Yes
1
06/21/06
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes
MVD Comments: (MVD #1 01/09/06 Ichilov Hospital in, Tel Aviv (Israel)).
Jeffrey Alexander

Pukalani, HI (USA)
Left
2003
Yes
No
Yes
1
08/04/04
Dr. Takanori Fukushima
Honolulu, HI (USA)
No

Botox Comments: I used Botox for a few years and it worked fine, but after a few years the effectiveness started to wear down, so I went for MVD.

MVD Comments: Wondering if I have blepharospasm. The first MVD they found no vessels or arteries touching the 7th nerve so no decompression was performed. I was spasm free for about 2 years.

Norma Aliah

Troy, MI (USA)
Left
1997
No

Yes
1
08/07/07
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

MVD Comments: Update as of 08/23/07 - I woke up after surgery “SPASM FREE” and remained spasm free for the next two days. On day 3 post-op the spasms came back for two days. On day 5 post-op I knew something was different right away, my face started to flutter and just as soon as it had, it was like a switch turned it right off. For the next few days I would just feel a slight pull trying to happen, but only at night time. I have some facial weakness right now with yesterday being the first day that I could actually feel the weakness, compared to just seeing it. I would say that the headaches and strong ear pain have subsided almost completely, I'm now two days medication free. I have numbness on the top of my left ear but around the ear is still painful to the touch. Minor drainage from the incision, my post op appointment is on 08/31/07. I don't know whether my facial weakness will be going uphill or downhill from here, only time will tell.

Dr. Casey was wonderful and will respond the same day to our e-mail's. I can't tell you how helpful the member's have been to me prior to my surgery. They answered all my e-mail's and questions as honestly as they could.

Angelique Alkarra

Roseville, MI (USA)
Right
2002
Yes
No
No





Botox Comments:
Monika Almon

Savannah, GA (USA)
Left
1998
No

No






Rob Alness

Delavan, WI (USA)
Left
2001
No

Yes
1
03/12/03
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

MVD Comments: Comments: I would highly recommend Dr. Kassam for anyone considering surgery.
Myrna Alzate
Inactive Memb.
Elmwood Park, NJ (USA)
Left
1994
Yes
No
Yes
2
07/27/06
Dr. Chandranath Sen
New York, NY (USA)
Yes

Botox Comments: Click here to see my "Personal Botox Experiences".

MVD Comments: As of 08/02/06, still pretty weak, lost most of the hearing on the HFS side, but I'm "SPASM FREE"! (MVD #1 with Dr. Michael Schulder on 02/19/04).

Gail Amendt

Breton, Alberta (Canada)
Right
2002
Yes
No
Yes
1
01/27/09
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: I have been using botox every three months for two years. It worked well at first. Now it works less well and often with considerable drooping and paralysis of my mouth.

MVD Comments: Update as of 02/12/09 – I now consider myself to be spasm free!!!! What a joy to go out in public and not worry about what my face looks like. I just can't stop smiling. My recovery is going very well. I did have a couple of days when I had fever and chills, my neck and back ached, and my headache was worse. Dr. Kaufmann's nurse, Janice, said that there is such a thing as "chemical meningitis", which is basically a reaction to the drugs, teflon, etc. As my symptoms only lasted a couple of days, I am inclined to think that I just had a touch of flu. Anyway, I am feeling great now and rarely get a headache unless I really overdo things.

Steve Anderson

Madison, WI (USA)
Left
1995
Yes
No
Yes
1
04/11/06
Mr. Wadley
Whitechapel, London (United Kingdom)
Yes

Botox Comments: Botox made my face look lopsided, especially when smiling.

MVD Comments: Update as of 05/14/09 - My spasms were actually worse for the first year after surgery. I continued to have Botox for the next two years, but was finally able to go without them as it appeared my nerve was beginning to heal itself. I don’ know if others have followed as long a relief period as I have, but I am here to testify that my recovery is now almost 100% after over 4 years. I had considered a second MVD, but the first surgery had many complications and I just could not bring myself to think about even running additional tests to see if a second MVD was warranted. I count myself blessed that just waiting did prove to be all I needed to do.

Luly Andrade
Inactive Memb.
San Diego, CA (USA)
Left
1999
Yes
No
Yes
1
06/04/04
Dr. John Alksne
La Jolla, CA (USA)
Yes

MVD Comments:
Greg Ansley

Alpharetta, GA (USA)
Left
2003
No

No






Steve Anderson

Madison, WI (USA)
Left
1995
Yes
No
Yes
1
04/11/06
Mr. Wadley
Whitechapel, London (United Kingdom)
No

Botox Comments: Botox made my face look lopsided, especially when smiling.

MVD Comments: No change in symptons.

Sheila Anwar

Sabah (Malaysia)
Right
2005
Yes
No
Yes
1
09/09/09
Dr. Lee Foo Chiang
Petaling Jaya (Malaysia)
Yes

Botox Comments: Lost smile and numbness on HFS side.

MVD Comments: Update as of 09/16/09 - 7th day post op.,glad I did it. You won't know if you don't try. Of course research, guts, physical, mental, financial preperation are vital.

Elaina Apatoff

Tabernacle, NJ (USA)
Right
1995
Yes
No
Yes
1
06/26/03
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: I will never use it again. I had severe facial drooping which did not "wear off" in 3 months; at 3 months, however, the spasms returned. At 5 months post Botox, I was diagnosed by a neurologist with permanent nerve damage. More than one year later, my face recovered.

Click here to see my "Personal HFS History".

MVD Comments: I'm approx. 90% back from the temporary facial weakness, and it's only noticeably to me, the perfectionist, at this time. (12/15/03)

Dee Applegate

Orem, UT (USA)
Right
2000
No

No






Bruce Archibald

Duncan Falls, OH (USA)
Right
2006
No

Yes
1
08/14/08
Drs. Jannetta and Sekula
Pittsburgh, PA (USA)
Yes

MVD Comments: Praise the Lord the facial SPASMS ARE GONE. God bless Drs. Jannetta and Sekula for their skill.

Click here to see my "MVD Diary.

Paula Argyros

Dunedin, FL (USA)
Left
1979
Yes
Yes
No





Botox Comments: Some relief, weakness on that side of face.
Emily Armitage

Columbus, OH (USA)
Right
2007
Yes
No
Yes
1
01/14/09
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox-once...not effective at all.

MVD Comments: Update as of 02/08/09 - I am happy to say that I haven't had spasms since the 8th day after my surgery. For those that experience HFS, this website in invaluable.

Mary Jo Armstrong

Longwood, FL (USA)
Left

Yes
No
No






Janine Atkinson

Mississauga, Ontario (Canada)
Right
2006
No

No






Carole Atsma

Abbotsford, British Columbia (Canada)
Left
2002
No

No





Click here to see my "Personal HFS History".

Charlie Auge

Waynesburg , PA (USA)
Right
2006
Yes
No
No





Botox Comments: Extreme pain in neck after injections in neck.
Bill Auger

Milford, CT (USA)
Left
2004
No

No






Debbie Augey

Estevan, Saskatchewan (Canada)
Left
2003
No

No






Marlene Aurit

Austin, MN (USA)
Left
2006
Yes
Yes
No





Botox Comments: Update as of 09/02/07 - Just had my 4th round of Botox shots. Each time it is a little different as far as the results - but I have gotten to the point of anxiously awaiting my next shots as they help so much and give me much needed relief. The last time I had 6 shots on my left side. I usually feel results right away lasting about 1 ˝ months and reach a leveling off period, then slowly starts to go the other way. The one annoyance is the dry eye, use eye drops for that. My Doctor is with the Mayo Health System and has treated patients with Botox for many years, feel very lucky to have found him.
Recep Avci

Bozeman, MT (USA)
Right
2006
Yes
No
Yes
1
12/12/07
Yes
Dr. Amin Kassam
Pittsburgh, PA (USA)

Botox Comments: My first Botox application was at the beginning of 2007. It was partially successful. My eye was under control but my mouth still ticks. I am two months into my first Botox application and I am not satisfied.

MVD Comments: Update as of 01/06/08 - Had a rough recovery (mostly feeling miserable), and have had some facial palsy but no spasms, and overall I'm pleased with Dr. Kassam and the surgery.

JoAnn Bahr

Hartland, WI (USA)
Left
1999
Yes
No
Yes
1
12/01/09
Dr. Michael J. Link
Rochester, MN (USA).
Yes

Botox Comments: Was on Botox treatment on and off for seven years. I had some relief when the symptoms were concentrated in my eye and cheek area. When spasms moved to cheek, lip and lower chin area, Botox injections were hit or miss as to effectiveness. Largere doses were needed and left the left side of my face with a "frozen" look that I did not like and looked very strange in pictures. I have been off Botox for over one year.

MVD Comments: Update as of 01/04/10 - As of today I am declaring myself spasm free. I have no complications from surgery. My hearing is intact, no vertigo, no nausea and no facial paralysis. I do have that full feeling in my left ear, but Dr. Link is confident that will go away in time. It clears up a little when I blow my nose or cough, so I think that it will clear up soon. I’ve had HFS for ten years, a long time to have the facial nerve compressed.

Jim Bailey

Electric City, WA (USA)
Left
1978
Yes
Yes
No





Botox Comments: Began in 1986 by going to Canada. Works quite well. I have injections approximately every 5 months.

Click here to see my "Personal HFS History".

Lynda Bailey

Fairport, NY (USA)
Left
2005
Yes
No
No





Botox Comments:Second try with Botox with a neurologist this time has left me with a partially frozen eye and blurred vision. Think this is it for Botox.
Brenda Baker

Gastonia, NC (USA)
Left
1998
Yes
No
Yes
1
04/07/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments:
Jan Bakke
Inactive Memb.
Notodden (Norway)
Left
2004
Yes
No
Yes
1
02/20/06
Dr. Per Kristian Eide
Oslo (Norway)


Botox Comments: First time on 02/23/05
Rosemarie Balano

Zamboanga Sibugay (Philippines)
Left
2007
No

No






Elsie Balfour

Saskatoon, Saskatchewan (Canada)
Right
1996
Yes
Yes
No





Botox Comments: Mixed results.
Barb Ballard

Portland, OR (USA)
Right
2009
No

No






Robert Banathy

Canton, GA (USA)
Left
2005
Yes
Yes
No





Botox Comments: Botox has been effective in controlling symtoms, with 3 month injection intervals.
Marion Bangert

N. Cape May, NJ (USA)
Left
2003
No

No






Lucy Barone

Pittsburgh, PA (USA)
Left
2009
Yes
No
Yes
1
08/27/09
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: I received a total of 3 Botox treatments. The first treatment seemed to be the most effective and lasted approximately 8 months. My final Botox treatment in November 2008 lasted approximately 5 weeks. That final treatment seemed to cause the left side of my mouth to weaken and droop, making it look as though I had had a stroke. My decision to stop Botox treatments and seek MVD surgery was one of the best decisions I have ever made.

MVD Comments: Update as of 09/08/09 - My MVD surgery was successful ... I was spasm free immediately following surgery and continue to be spasm free ... and my smile has been restored to a full smile once again. Thank you, Dr. Sekula!!

Steve Barone

Scottsdale, AZ (USA)
Left
1996
Yes
No
Yes
2
08/15/02
Dr. Kris Smith
Phoenix, AZ (USA)
Yes

MVD Comments: Became "SPASM FREE" 18 months following MVD #2.
Edwin Barreiro

Ringwood, NJ (USA)
Left
2000
Yes
No
Yes
1
03/01/04
Dr. Chandranath Sen
St.Luke's-Roosevelt Hospital, New York, NY (USA).
Yes

MVD Comments: Loss 40-50% hearing in left ear. Would still recommend MVD even with hearing loss.
Ira Barry

Chicago, IL (USA)
Right










Greg Barton

Hartsville, TN (USA)
Right
2003
Yes
Yes
No





Botox Comments: Less effective after a couple of years of injections. (maybe 3 months of value now) Eyelid droops and cannot turn the right corner of my mouth upward. Botox is beginning to be less effective (now). Now considering stopping Botox and going for MVD surgery.
Barb Bartz

Pretoria (South Africa)
Right
1987
Yes
Yes
Yes
2
06/22/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary". (MVD #1 also with Dr. Jannetta on 04/01/04)

Bob Basque

Houston, TX (USA)
Right
1998
Yes
No
Yes
1
08/17/04
Dr. Robert Grossman
Houston,TX (USA)
No
Botox Comments: Botox(R) 40 units every 90 days in several places on the face: reduces the intensity of the spasm to 20% initially for 3-5 weeks then the positive effects diminish to no affect at all by 70 days post injections. Have tried Myloblok only once. Injections were more painful and the positive effects did not last more than 50-60 days vs 70 days with Botox.
Had muscle atrophy in the face from Botox but no other side affects at all. I responded to Botox well but am tired of driving one hour each way to have it done and see no end to this merry-go- round.

MVD Comments:

Joanne Batterberry

Spicer, MN (USA)
Right
1998
Yes
No
Yes
1
11/06/09
Dr. Michael J. Link
Rochester, MN (USA)
No
Botox Comments: Drooping of right eye lid and right side of face. It was very traumatic for me. It lasted for a good two months.

MVD Comments: Update as of 11/26/09 - I have experienced improvement in the spasms and am hopeful they will stop. Dr. Link said it sometimes takes a while to completely stop the spasms.

Lucille Beaudin

Winnipeg, Manitoba (Canada)
Left
1998
Yes
No
Yes
1
05/13/02
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: Botox injection (twice)above and below the eye, upper cheek.The injection quieted the immediate area, however it worsened the extremities of the left eybrow and upper lip. The lip dooped even worse, the eye and eyebrow stretched upward profusely and the condition was worse than ever in terms of facial looks. The eye teared for approximately 3to 4 weeks.

MVD Comments 06/24/02: I have been spasm free since June 1, 2002. (My MVD was on May 14, 2002 and I had small spasms and flutterings just under the eye after surgery.) During the month of June I waited to test the waters in more stressful times and my face remains the same; very peaceful and quiet. I'm thankful every day to Dr. Kaufman and to all of you for your stories which guided me throughout tough times. I made the decision under much thought but I couldn't have followed through with surgery without all of you. I still experience some headaches.
Mary Lou Beck

Delray Beach, FL (USA)
Left
2005
Yes
No
Yes
1
08/07/08
Drs. Peter J. Jannetta & Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: First time was effective. the next six times, over the course of two years, had undesirable side effects of some facial paralysis, especially at the left side of my mouth. I had a distorted, one sided smile.

MVD Comments: Update as of 11/18/08 - My surgery was an immediate success, I am totally spasm free. Now for the downside. I had two compressed nerves. The #7 facial nerve creating the HFS and my vestibular nerve which created an equilibrium problem. I had complete facial paralysis on the left side of my face for about 4 weeks. Then very, very gradually I started to get some movement return. It has now been 15 weeks of recovery. My forehead, eye and upper cheek area appear normal. The lower half of my cheek and around my mouth have yet to return to normal. I've been assured that it will fully repair itself within due course. At least I see continuous improvement every week albeit very slowly. The recovery to my vestibular nerve has been a nightmare. For six weeks it felt like I was living within a tornado because it was the nerve that controls your equilibrium. I am happy to report that now, 15 weeks later, I am almost back to normal with my standing and walking. Bottom line - I would do the HFS surgery again in a heartbeat. I'm thrilled with the results.

Misha Beck

St. Louis, MO (USA)
Right
2008
No

No






LuAnne Becker

Jacksonville, FL (USA)
Right
2002
No

No






Sherrie Becker

Allentown, PA (USA)
Left
2002
No

Yes
1
08/21/06
Dr. Eric Zager
Philadelphia, PA (USA).
Yes

MVD Comments: I awoke from my surgery and continue to be SPASM-FREE!!!
For details, click here to see my "MVD Diary.
Hazel Bell

West Midlands, England (United Kingdom)
Right
2003
No

No





MVD Comments: For details, click here to see my "MVD Diary".

Janine Bell

Maple Ridge, British Columbia (Canada)
Right
1997
Yes
No
Yes
1
07/18/05
Dr. Chris Honey
Vancouver, British Columbia, (Canada)
No
Botox Comments: June 14, 2001 (24 units) this worked well except for my eye was stuck open for three months or so. I had more Botox Dec 03, 2001 (11 units) and Dec 17, 2001 (4 units) and again March 15, 2002 (24 units), but these did not seem to work. I just had 12 units Nov 22, 2004 so I am waiting to see if it worked.

MVD Comments: Update as of 05/06/08 - I had been completely spasm and twitch free since my surgery in July 2005 until a couple of months ago when HFS reared its ugly head. It started gradually, but in the past couple of weeks some days the spasms start every time I blink. That may last for 5 to 20 minutes and then nothing for a little while and then all of a sudden my face will just start twitching in full spasm. Some days it's worse than others but it's not nearly as bad as before I had the surgery. I am just fearful that it will come back full force because it started off slowly a couple of months ago and seems to be getting worse.

Update as of 03/14/09 - Scheduled for MVD Consultation on 05/14/09 with Dr. Navraj S. Heran in British Columbia (Canada). Click here to see my "MVD Diary".

June Bencivenga

Milford, CT (USA)
Right
2004
No

No






Roy Benear

Austin, TX (USA)
Left
2001
Yes
No
Yes
1
12/19/07
Dr. Louis Whitworth
Dallas, TX. (USA)
Yes

Botox Comments: At first, some relief, but over time, diminishing results.

MVD Comments:

Rita Benitez

Miami, FL (USA)
Left
1996
Yes
No
Yes
1
09/16/02
Dr. Albert Rhoton, Jr.
Gainesville, FL (USA)
Yes

Botox Comments: I tried Botox for 5 years, untill I developed immunization.

MVD Comments: As of 12/14/03, I am spasm free...although lately there seems like a little twitch that wants to come back...I am hoping it doesn't gain strength....my Left ear rings a little bit also, a little dizziness but nothing I cannot live with. I would have the surgery again in a heartbeat!!!

Chris Bennett

Milford, CT (USA)
Right
2007
No

No






Don Bennett

Gloversville, NY (USA)
Left
2005
Yes
No
Yes
1
06/25/09
Dr. Thomas Lovely
Albany, NY (USA)
No

Botox Comments: Botox 3 times. I have some residual effects from Botox my left eye droops some and so does my left side of my mouth.

MVD Comments: Update as of 07/25/09 - I had my MVD three weeks ago and still have spasms. They seemed to ease up for week after surgery but I think that they are just as bad now as they were before the surgery. The doctor told me it could take up to six months to become spasm free. I am very discouraged at this point. I thought that I would wake up and be spasm free.

Maddy Benson

Stockbridge, VT (USA)
Right
2002
No

Yes
1
10/04/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes
MVD Comments: Update as of 10/04/07 – About 3 weeks post-op I announced that I was spasm free. Shortly after the announcement, I had the scary “facial droop”. It resolved very quickly and was back to normal by 3 weeks. When the droop resolved, the spasms came back. It has been a very tough year, the constant monitoring of the twitches and spasms and the many, many ups and downs. When the spasms returned slowly and different, I thought it would all be okay, but it seems I am going the 'wrong' way here! Hope is a wonderful thing, but there comes a time when it is better to face facts, accept the situation and move on. At 11 months, I stopped believing this was ever going to improve without another surgery. When it gets to be too much, we will talk again about another surgery.

Click here to see my "MVD Diary.

Barbara Benton

Columbia, MD (USA)
Left
2002
No

No






Corena Berkbigler

Jackson, MO (USA)
Left
2005
Yes
No
Yes
1
04/17/08
Drs. Peter J. Jannetta & Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox dried my eye sockets out and had to use cream, Restasis and liquid tears from my eye specialist. Am off of the cream but still use the Restasis morning and night and the liquid tears whenever I need them.

MVD Comments: I got an appointment with Neurosurgeon Scott R Gibbs MD and he explained that he actually only performed 2 MVD and suggested we go to Pittsburgh, PA to Dr. Peter J. Jannetta, M.D. to have this surgery. He even flew to Pittsburgh to view my surgery and 4 others performed by Drs. Peter J. Jannetta & Raymond F. Sekula, JR. that very day. The results were amazing and I awoke “SPASM FREE”. My husband says I look like I did 2 1/2 years ago. My face is not drawn, my left eye is completely open, my mouth is normal and now my lower dentures do fit which I had to stop wearing them.

Carlos Bernal

San Antonio, TX (USA)
Left
2001
No

No






Iracema Bernardes

Lorton, VA (USA)
Right
1999
Yes
No
Yes
1
08/03/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: Got tired of Botox because it made me look like a freak - one side is paralyzed. It's even difficult to drink from a cup. The injections hurt a lot. I haven't done it for 9 months.

MVD Comments:

Grete Berndt

Shawano, WI (USA)
Left
2000
Yes
No
No





Botox Comments: Had Botox in 2002. Stopped twitching but made my left side droop especially mouth and chin. Tried again in 2008. Left eye was noticeably more open than right and left lip drooped which made it somewhat difficult to speak and eat. Will not do it again.
Pat Berntsen

Lockport, NY (USA)
Right
1988
Yes
No
Yes
1
12/10/08
Dr. Elad I. Levy
Buffalo, NY (USA)
Yes
Botox Comments: I have been taking Botox shots for a few years. At first they worked well although the side effects are horrible. But now, they stop working sooner. The tics are getting worse.

MVD Comments: Update as of 11/03/09 - I can happily say that I continue to be spasm free. What a wonderful treat it is to be able to smile again. I have gotten so that I actually like it. I can not thank Jack, Wilma and this group for all of the information and support they have given me.

For details, click here to see my "MVD Diary".

Howard Berris

Novi, MI (USA)
Left
2004
No

No






Henri Berroteran

Tulsa, OK (USA)
Left
1998
Yes
Yes
No





Botox Comments: Controlled spasms but it impacted my speech. My lips wouldn't move correctly. My eyebrow was raised and during one experience my eye drooped. It corrected in a couple of weeks. I get teary eye.
Kurt Berry

Davisburg, MI (USA)
Right
2006
Yes
Yes
No





Botox Comments: First shots help for 30 days, second session had little results.
Wilma Bertling

Sebastian, FL (USA)
Left
2004
Yes
No
Yes
1
09/16/08
Dr. Elad I. Levy
Buffalo, NY (USA)
Yes

Botox Comments: One Botox treatment, no improvement.

MVD Comments: Update as of 09/17/08 - Successful MVD, hearing intact, no equilibrium problems and spasm free.

Jamal Best

Brooklyn, NY (USA)
Left

Yes
No
No





Botox Comments: I do not like botox. I hate needle.
Lynda Beutnagel

Mesquite, TX (USA)
Left
1982
No

Yes
1
10/15/99
Dr. Sam Finn
Dallas, TX (USA)
Yes

MVD Comments: Loss of hearing on HFS side - I am very pleased with the results of my surgery
Brenda Bidwell

Saskatoon, Saskatchewan (Canada)
Left
1996
No

Yes
1
11/05/02
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes


Ginny Bierschenk

West Hempstead, NY (USA)
Left
1986
Yes
No
Yes
1
07/12/06
Dr. Chandranath Sen
New York, NY (USA)
No

Botox Comments: Controlled spasms in the beginning. Face became droopy - couldn't smile. After a while was no longer getting any effects (became immuned to the botox after so many years).

MVD Comments: As of 08/28/06 - Continuing to have intermittent spasms. Dr. said it may take up to 2 months for MVD to take effect.

Ginny Bigelow

Downers Grove, IL (USA)
Right
1999
No

Yes
1
04/03/06
Dr. Gail Rosseau
Chicago, IL (USA)
Yes

MVD Comments: For details, click here to see my "MVD Diary".
Kirby Biggs

Garland, TX (USA)
Left
1996
Yes
No
No





Botox Comments: Do you twitch or does your face look paralyzed.
Rob Bindler

Farmingdale, NY (USA)
Left
2000
Yes
No
Yes
1
10/08/07
Dr. Chandranath Sen
New York, NY (USA)
Yes

Botox Comments: Eye tremor was relieved but terrible sagging and paralysis of the facial muscles (like Bells palsy) on the effected side.

MVD Comments: As of 10/09/08 - Sometimes I may get slight incidental spasms while drinking hot beverages or eating, but not frequent. Completely symptom free as of the end of February, 2008 (4.5 months after surgery.

Daz Bing

Nottingham (United Kingdom)
Right
1999
Yes
Yes
No





Botox Comments: Just had first injections April 2006.
Adam Birch

Reading (United Kingdom)
Right
2003
No

No






Laurie Bird

Sherman Oaks, CA (USA)
Left
1992
Yes
No
No





Botox Comments: Botox, worked ok at first, gradually lasted less time.
Wendy Birnbaum

Coronado, CA (USA)
Left
2006
Yes
No
Yes
1
03/12/08
Dr John Alksne
La Jolla, CA (USA)
Yes

Botox Comments: some relief with facial asymmetry.

MVD Comments: Update as of 03/15/08 - Discharged the afternoon of 03/14/08. My husband took me errand/grocery shopping today. Will report on results in a few days as I feel real "spacey "and tired now.

Click here to see my "MVD Diary".
Ruth Birznieks

Gosford (Australia)
Right
2000
No

Yes
1
02/08/07
Prof. Michael Besser
Sydney (Australia)
No

MVD Comments:
Patricia Bishop

Edenton, NC (USA)
Left
1999
No

No






Betty Blake

Portsmouth, NH (USA)
Right
1998
Yes
Yes
No





Botox Comments: 06/01/05 - Just had first Botox treatment. Right eye won't close completely, dry and at the same time teary, blurred vision and still feeling spasms in cheek and mouth area.
Judy Bledsoe

Aberdeen, SD (USA)
Right
2007
Yes
No
Yes
1
12/30/09
Dr. Michael Link
Rochester, MN (USA)


Botox Comments: It has worked for me, but due to this being considered progressive by Dr. Link at the Mayo Clinic, I am leaning toward the surgery.

MVD Comments:

David Bockman

Calgary , Alberta (Canada)
Right
2002
No

No






Brian Bockoven
Former Memb.
Fort Dodge, IA (USA)
Left
2005
Yes
No
Yes
1
02/15/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: I had shots every three months. The the short term effectiveness was not worth the 4 hour drive,(one way)dry eyes, lopsided face and the pain.

MVD Comments: Update as of 03/05/07 - Two weeks and three days after surgery and I am completely spasm free. I did have a few complications during surgery. The anesthesiologists had difficulty inserting the breathing tube (it took them an hour and a half). While they were trying different tools it caused bleeding in the lung and a blood clot in the lung, and eventually the right lobe collapsed - which they took care of at that time. I ended up on a ventilator through the night and stayed an extra day in the intensive care unit. That Saturday, two days following surgery, I was released from the hospital. I spent most of Saturday & Sunday recovering. Had a follow up appointment Monday morning and flew back to Iowa Monday night. Since then I have been experiencing light headaches, until just a few days ago when the headaches became more intense.

Angela Bond

Basingstoke, England (United Kingdom)
Right
2006
Yes
Yes
No





Botox Comments: 03/05/07 - Only had 2 doses so far but it is making symptoms worse rather than better, making me feel lopsided and conspicuous.

Update as of 11/01/07: I am hugely delighted to report that my spasm has disappeared after about 2 years. You cannot believe what a relief it is to have normal interactions again and not to feel that each day is a struggle against the spasms. My remission or reprieve has come about after my family doctor started playing about with my blood pressure medication. After about 2 weeks on Losartan 50mg daily (double the previous dose) I realised that things had improved. It took a while to sink in, but I have now been free of the eye and mouth twitch and pulling down of my right eye for about 6 weeks. I would hesitate to suggest that this drug will work for everyone, but it has worked for me and is possibly worth a try for others? For me the key seems to have been the increase in doseage. I do still have the occasional reminder of the twitch but it is 100 per cent better than it was.

Rosalee Bond

Wagga Wagga (Australia)
Right
2007
Yes
No
Yes
1
06/25/09
Prof. Andrew Kaye
Melbourne, Victoria (Australia)
Yes
Botox Comments: Eases the spasm, but get dry eye where eye does not close properly and still some spasms.

MVD Comments: Update as of 07/03/09 – The bad news is that the surgeon found that I had an aneurysm forming that had to be wrapped and quite a lot of movement was required. The result is that I have had no hearing in my right (HFS) ear since my MVD. They are not sure whether this will come back or not because it could be air around the ear. The main trouble has been that I have had double vision and they are still not sure if I had a stroke or not as my blood pressure went through the roof. The good news is that I have been spasm free since the operation

Colleen Boos

Calgary, Alberta (Canada),
Left
1998
Yes
No
Yes
2
03/06/07
Dr. Anthony Kaufmann
Winnipeg (Canada) Calgary, Alberta (Canada)
Yes

Botox Comments: After 6 years of botox, I had MVD surgery in Calgary which was not successful, I continued 3 more years on Botox and have found my face has become very sensitive and usually I'm overdosed and disabled for 2-4 weeks every 3 months.

MVD Comments: (2nd MVD, 1st on 11/07/03, with Dr. Kish)

Maureen Bourke

Melbourne (Australia)
Right
1994
Yes
No
Yes
1
05/31/07
Mr. Peter Dohrmann
Melbourne (Australia)
No

Botox Comments: Was effective but suffered several side effects including black eye, swollen eyelid, inverted eyelid.
Dan Boynton

Lincoln, MA (USA)
Left
1998
Yes
Yes
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Bryan Bradford
Former Memb.
Garland, TX (USA)
Left
1995
Yes
No
Yes
1
03/07/03
Dr. Jonathon White
Dallas, TX (USA)
No

Botox Comments: Botox injections - left face paralized - unable to smile.

MVD Comments: During the MVD, they discovered that the offending artery had grown a "branch" which had fused with the seventh nerve. The branch could not be removed without causing a stroke. They did insert sponges in a couple of places where the offending artery was pushing up against the seventh nerve. I have some relief but far from complete.

Joyce Bracey

Virginia Beach, VA (USA)
Both
1999
Yes
Yes
No





Botox Comments: Botox worked for some time then I did not see any difference but have kept on getting the shots every 3 months. I still have a hard time swallowing, eating and speaking.
Julia Bravo

Glendale, CA (USA)
Right
2007
Yes
Yes
No





Botox Comments: No side effects - first time it did not work as expected.
Michelle Braga

Santa Rosa, CA (USA)
Right
2009
No

No






Susan Brendemihl

McKinney, TX (USA)
Right
1999
Yes
No
No





Botox Comments: Botox - very effective - but caused drooping of mouth and eye.
Deane Bristow

Newport, OR (USA)
Left
2007
No

No







Dorothy Britton

Stone Mountain, GA (USA)
Left
2004
No

No







Cindy Brockman

Hamburg, NY (USA)
Left
2000
Yes
No
No





Botox Comments: It worked for me. I had some problems with my eye not shutting. Had to use a gel and eye patch.

Click here to see my "Personal HFS History".

Janie Brooksher

Littleton, CO (USA)
Left
1999
No

No







Debbie Brosnan

Edinburgh (United Kingdom)
Right
2002
No

No






Sharon Brott

Cincinnati, OH (USA)
Right
1989
Yes
Yes
No






Allan Brow

Toronto, Ontario (Canada)
Left
1999
Yes
No
Yes
1
05/13/08
Dr. Anthony Kaufmann
Winnipeg (Canada)
Yes

Botox Comments - Botox does help, but with droopiness.

MVD Comments: Update as of 01/04/09 – My MVD was on 05/13/08, almost eight months ago, and I’m now “Spasm Free”. It was a very difficult surgery according to Dr. Kaufmann and he did say it could take several months. For all the members that are post-op and waiting for the spasms to stop, have patience and don't give up hope.

Pat Brown

Amarillo, TX (USA)
Right
2000
Yes
No
Yes
1
07/09/09
Drs. Peter J. Jannetta & Ray Sekula
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox, effective for only a few weeks, the longest was about 6 weeks before wearing off. Cost prohibitive. Had a couple of bad experiences because dosage was too high. Even lower dosages affected my vision.

MVD Comments: Update as of 08/28/09 – It has only been six weeks, the only complications I had were nausea after surgery, and phlebitis in the arm used for IV. I still experience a "tug" at the incision site, and an occasional headache. I am so grateful for your website. God blessed me greatly and I feel so much better about myself and the way I look and have a much more positive outlook on life.

Skip Brown
Former Memb.
St. Cloud, FL (USA)
Right
2004
No
No
Yes
1
10/01/08
Drs. Peter J. Jannetta & Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

MVD Comments:
Janice Brueggert

Sidney, OH (USA)
Left
2003
Yes
No
Yes
2
11/13/08
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: 2 botox injections 5-15-05 & 9/14/05-did not like the result-did not have any more. May have eased the spasms, but make the face droop.

MVD Comments: Update as of 02/14/09 – I am still having some spasms – and they can be strong. I had noticed that I had something in my head – it turned out to be a staple – in fact there were three of them. I don’t know what would have happened if I had not noticed this – and later had an MRI. I am also having problems with back pain and am being treated by doctoring my local doctor.(MVD #1 also with Dr. Jannetta on 02/01/07).

Sara Bryant

Fort Campbell, KY (USA)
Right
2009
Yes
Yes
No





Botox Comments: first treatment looked ok but right eye drooped and symetery not right... just had 2nd treatment.. bruising and black eye with swelling ( was told had an allergic reaction) and severely distored between right and left side. Have very dry eye and droppy lid, mouth pulling downwards with spams still.
Kathleen Buchanan

Texarkana, TX (USA)
Right
2001
No

No






Jim Bucholz

Salem, OR (USA)
Left
2002
No

No






Julie Burdett

Aylesbury (United Kingdom)
Left
2007
No

No






Pennie Burdic

Florence, OR (USA)
Left
1995
No

No





Comments - MVD Surgery: Not Yet..Maybe Someday but Insurance Problems.
Nicola Burgon

Newcastle upon Tyne (United Kingdom)
Left
2009
Yes
Yes>
No





Botox Comments: So far I have received one dose of Botox injections and am currently awaiting my next injection.
Melinda Burgos

Gilford, NH (USA)
Left
1998
No

No






Carolyn Burks

Arlington, TX (USA)
Left
1974
Yes
No
Yes
2
11/18/04
Dr. Robert Grossman
Houston,TX (USA)
Yes

MVD Comments: Update as of 10/22/05: Unfortunately I lost the hearing in the HFS side ear. Dr. Acosta (my neurosurgeon here in Arlington, TX. tells me that he believes most of the weakness on the hfs side will continue to improve. Unhappily, he was clear about the fact that my hearing will not return. He had discussed it all with Dr. Grossman (in Houston, TX (USA). Continue to have a bit of a CSF leak, but that is lessening, we believe.

It really has been quite an adventure. I was in the hospital for nine days. Had a pretty bad CSF leak, a lumbar puncture, bladder infection, overwhelming headaches and general discomfort. But, I’m still“SPASM FREE” a year later. I feel wonderful and would do it all again even if I had known these things were going to happen. Iam very lucky and very grateful!!! (MVD #1 with Dr. Acosta on 01/15/79).
Bonnie Burnham

Black River Falls, WI (USA)
Left

Yes
No
Yes
2
05/25/06
Dr. David G. Piepgras
Rochester,MN (USA)
Yes

Botox Comments: Not much help as the main muscle on that side of my face could not be injected, and of course that is the biggest problem.

MVD Comments: Update as of 05/25/07: Spasm free but have left side palsy that remains one year post-op. Had a procedure called Tarsoraphy to bring the bottom left eyelid up to prevent anymore injury due to dryness or anything airborne getting into the eye. I can close the eye somewhat, but not tight. To close the left eye I have to close both eyes. I'm very glad to be spasm free but wish I could get to full recovery and get more energy back.

For details, click here to see my "MVD Diary".

Mary Bruni

Burnaby, British Columbia (Canada)
Left
2004
No

Yes
1
01/19/07
Dr. Chris Honey
Vancouver, British Columbia, (Canada)
Yes

MVD Comments: Update as of 01/29/09 - In May 2008 I became totally spasm free. This would have been 1˝ years after my MVD surgery. My recommendation and opinion to all that are still suffering this horrific HFS is that MVD is the only answer and solution to this condition. If needed be, I would have done another MVD. I am totally enjoying having a normal face again and there are also times that I even forget that I ever had HFS.
Shirley Burr

Minneapolis, MN (USA)
Right
2001
Yes
No
No





Botox Comments: Botox injected near the eye. Constant tearing for several days; dryness and aching; couldn't blink eye; double vision.
Russ Buysse

South Bend, IN (USA)
Left
2003
Yes
Yes
Yes
1
02/21/06
Dr. Hae-Dong Jho
Pittsburgh, PA (USA)
Yes

Botox Comments - No help

MVD Comments:

Laurence Cadorath

Bournemouth, (United Kingdom)
Left
1994
Yes
No
No





Botox Comments: First time had no effect. Tried again 6 months later and my left eyelid drooped for 4 weeks. Also my upper lip felt numb which took a long time to wear off. Will not be having any more injections.
Del Callman
Former Memb.
Argyle, TX (USA)
Right
1999
No

Yes
1
09/08/03
Dr. Thomas Kopitnik
Dallas, TX (USA)
Yes

MVD Comments:
David Calvi

Santa Rosa, CA (USA)
Left
1986
No

Yes
1
11/09/04
Dr. Brian Andrews
San Francisco, CA (USA) Dallas, TX (USA)
Yes

MVD Comments: Slight hearing loss & tinnitus on HFS side. I consider the complications to be very minor compared to suffering spasms for 18 years.
Gwen Cameron

Aurora, Ontario (Canada)
Left
1996
Yes
No
Yes
1
02/26/08
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: It causes my eye to get very dry and sore so I use Natural tears for a couple of weeks after getting the shots. I get 5 around the eye areaand 3 in my lower cheek.

MVD Comments: Update as of 12/03/08 - After 9 months of my MVD I now consider myself to be “spasm free”. I haven’t had any spasms for a few months now but wanted to wait and be sure before I said anything. I want to thank all the HFSA members as if I hadn’t found the group by accident, I probably would not have had my surgery or had contact with all the wonderful people that I have met or spoken to since joining.

Joe Campbell

Riverside, CA (USA)
Left
2005
Yes
Yes>
No





Botox Comments: First botox treatment (07/08). It is keeping my eye open, but I can't blink and my eye is dry.
Lou Campbell

College Station, TX (USA)
Right
1995
Yes
No
Yes
1
06/16/04
Dr. Richard Harper
Houston,TX (USA).
Yes

Botox Comments: Tried Botox one time, had a droppy eye and face for weeks and it affected my vision so I did not try it again.

Click here to see my "Personal HFS History".

MVD Comments As of 06/27/04: Developed a CSF (cerebrospinal fluid leak) day 7 after my surgery. For those of you who having the surgery in the near future, REST IS ESSENTIAL..... I did not have any of the post op side effects and felt so good that I was over doing it. Dr. Harper put me on complete bed rest for 48 hours exactly one week after surgery. The leak did not stop so he added another 48 hours with the idea of me going back to Houston if the leak didn't stop. After the 3rd day of bed rest BINGO --- it stopped.
Paula Camping
Inactive Memb.
Peoria, AZ (USA)
Right
2001
Yes
No
Yes
2
10/16/06
Dr. Robert Spetzler
Phoenix, AZ (USA)
Yes
Botox Comments: Helps very little,terribly dry eyes & I have some drooping, but it's not real noticeable. I do have a good Dr. that gave me the shots but I am to the point that I no longer want to mask the problem I want to fix it.

MVD Comments: (MVD #1 on 06/15/04 also with Dr. Spetzler)
Linda Cannon

Mart, TX (USA)
Left
2003
Yes
Yes
No





Botox Comments: Initial Botox injections causing severe drooping of eye to the point of taping it open. Botox works well sometimes and sometimes too well never last longer than two months at the most. Have been getting it put directly in eye lid has the most effect but is unbearably painful, left side of face now droops all the time have some speech and drooling problems Doesn't seem to last long enough to make up for the pain and the cost.
Britt Caple

Birmingham, AL (USA)
Right
1999
Yes
Yes
Yes
1
11/21/01
Dr. Swaid Swaid
Birmingham, AL (USA)
Yes
Botox Comments: Update as of 11/07/07 - In October 2007 I re-started Botox at the eye foundation in Birmingham Alabama. So far I'm very happy with the results this time. Dr. Swede suggested giving Botox another try before opting for another MVD.

MVD Comments: Was Spasm Free for 4 years before they returned.
Vickie Capps

Albany, IN (USA)
Left
1996
Yes
No
Yes
1
06/10/04
Dr. Mitesh V. Shah
Indianapolis, IN (USA).
Yes

Botox Comments - Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

MVD Comments: As of 06/12/07, I never really noticed when the spasms went away, it was so gradual. It is great not to have a jerky face any more.
Danna Caraway

Cordova, AL (USA)
Left
1999
Yes
No
Yes
1
12/05/02
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: I have had two injections.The first was effective about 5 months and the second about 4 months.I have a deep ache in my eye after the injections and a lot of dryness, but the eye spasms stop.The left side of my mouth pulls at times.

MVD Comments: For details, click here to see my "MVD Diary".

Dervil Carey

Yonkers, NY (USA)
Right
1999
Yes
No
Yes
1
02/10/06
Dr. John Boockvar
Manhattan, NY (USA)
No

Botox Comments: Stopped spasms but my face still looked distorted.

MVD Comments:

Jenny Carmack
Inactive Memb.
Burlington, KY (USA)
Left
1998
Yes
No
Yes
1
12/05/05
Dr. George T. Mandybur
Cincinnati, OH (USA)
Yes
Botox Comments - Botox shots every 3 months 18 on left side of face and 5 in my left eye all with great results but only last a few weeks and then the beast wakes up mad and makes up for the lost time. It is painful at times as well.

MVD Comments: Update as of 09/15/06 - Lost all hearing on my MVD side and still in bed 24 hours a day because of dizziness beyond belief and I vomit all the time. I had success with MVD but came out of surgery permanently deaf on MVD side and dizzy 24-7 and been in bed every day since surgery.

Craig Carr

Cape Coral, FL (USA)
Right
2006
Yes
No
Yes
1
04/20/09
Dr. Siviero Agazzi
Tampa, FL (USA)
Yes
Botox Comments - was given BOTOX shots (5 in all, from 2.5 to 5 units) by the nuerologit mentioned above, so I am still feeling the effects. I DO NOT WANT TO DO IT AGAIN. The droopy mouth is not working for me and I can still feel the tightness and spasm, so its strictly to stop the twitching, which is a vanity thing anyway. Well, the droopy smile is no better than the twitching!

MVD Comments: For details, click here to see my "MVD Diary.
Irene Carr

Minneapolis, MN (USA)
Right
2004
No

No






Brian Carter

Essex, England (United Kingdom)
Left
1982
Yes
Yes
Yes
1
07/16/09
Mr. Jonathan Pollock
Essex, England (United Kingdom)
No

Botox Comments: I have begun to look like a stroke victim!

MVD Comments: Update as of 09/17/09 - Now 8 weeks post surgery, although I’m not spasm free yet, significant improvements are apparent. Not surprised since I have had HFS for 25 + years. I am optimistic that things will continue to improve.

Carol Casey

St Louis, MO (USA)
Left
2005
Yes
No
No





Botox Comments: Have had 2 botox treatments, so far, so good, Treatment at Washington University, Barnes Motion Disorder Center, St. Louis, MO (USA).
Chris Cassirer
Inactive Memb.
Virginia Beach, VA (USA)
Left
1996
Yes
No
Yes
1
11/30/00
Drs. Kassam & Horowitz
Pittsburgh, PA (USA)
Yes

Post MVD Conditions - Minor hearing loss of very high pitched sounds as of 04/26/01.
Pie Castillo

Quezon City (Philippines)
Right
1997
Yes
Yes
No





Botox Comments - Effective but for a moment only.
Gloria Castro

Castro Valley, CA (USA)
Right

No

No






Nancy Casto

Charleston, WV (USA)
Left
1999
No

Yes
1
04/27/05
Dr. Kassam
UPMC, Pittsburgh, PA (USA)
Yes
MVD Comments:
Patricia Cavalier

Dahlonega, GA (USA)
Left
1998
Yes
No
Yes
1
09/16/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox: very painful, I hated having my face "frozen" and I still have "lumps" from some of the injections....1 year later.

MVD Comments: I have suffered high blood pressure for over 20 years. Dr Janetta found the artery touching my facial nerve was also touching the nerve responsible for the high blood pressure. He fixed both. He said I should expect my blood pressure to begin to drop in 3-4 months.
Stefi Celie

Breda, Noord-Brabant (Netherlands)
Right

Yes
Yes
No





Botox Comments: Wears out very quickly.
Fred Centrella

Prospect, CT (USA)
Right
2003
Yes
No
Yes
1
07/16/07
Dr. Kenneth Vives
New Haven, CT (USA)
No

Botox Comments: OK at first but became progressively less effective. Also there was an injection miscue twice resulting in more extreme eyelid droop.

MVD Comments: Update as of 08/12/07 - Spasms are still occurring but lessening in frequency & intensity.

Joyce Cerneka

Arlington, TX (USA)
Left
1988
Yes
No
Yes
3
07/23/98
Dr. Peter J. Jannetta
Pittsburgh, PA
Yes

Botox Comments: Did Botox for over two years; at first had good results, gradually my face got weaker and weaker. In hindsight, I would not have done the Botox. if you do Botox, make sure you have someone very good administering the injections; once I had a doctor who didn't and he temporarily paralyzed my mouth. I feel that Botox has its place in this world, but for me, I was such a severe case that it didn't do any good.

Post MVD Conditions - titanium mesh corner turned up, was puncturing skin and had to be rounded off. Had to cut skull, not invasive surgery.
John Cerovac

Joliet, IL (USA)
Left
2006
Yes
Yes
No





Botox Comments: I'm getting my injections at 3 month intervals through Rush's Movement Disorder Clinic (Dr. Katie Kompoliti). Treatments are very effective, although it is strange to "feel the twitch" yet have no visible spasm. While there is some asymmetry as far as my smile goes, Dr. K is tweaking each treatment to find the sweet spot. I'd rather have that than some of the "use the whole syringe" approaches I've seen mentioned here.
Frank Cervantes

Jamul, CA (USA)
Left
2002
No

No






Cindy Champion

Worcester, MA (USA)
Left
2004
No

No






Song Chaney

Harker Heights, TX (USA)
Left
2004
Yes
Yes
No





Botox Comments: I have had botox injections on four occasssions. The effectiveness of botox is decreasing, but side effects are getting worse. Effects include drooping of left eye and paralysis around the mouth. Last injection was on March 28, 2008.
Sandra Chapman

Worcester (United Kingdom)
Right
2004
Yes
Yes
No





Botox Comments:
Sue Chapman

Berkshire, England (United Kingdom)
Right
2007
No

No






Audrey Charles

Los Angeles, CA (USA)
Left
2006
Yes
Yes
No





Botox Comments: On 12/18/06, I was injected with a mild version of Botox at Kaiser Hospital. It did nothing. I got my second round on 04/04/07, this time it was a lot stronger. Some facial muscles are paralyzed as expected but the twitching still goes on. It's now 13 days and the results are not very gratifying. My face is peeling, I have difficulty smiling, I cannot move the chewed food from the left to the right side of the mouth without assistance, and I can’t open my mouth wide to floss the molars or to bite off two slices of bread.
Suresh Chaudhry

Missouri City, TX (USA)
Right
1999
Yes
Yes
No





Botox Comments: The effect lasts for 2 months or so, but there is excesive droopiness.
Peter Chen

Rochester, MI (USA)
Right
2002
Yes
No
No





Botox Comments:
Shannon Cheney

Blue Springs, MO (USA)
Left
2007
No

No






Tammy Cheng

Walnut, CA (USA)
Right
2002
No

Yes
1
11/12/08
Dr. John Alksne
La Jolla, CA (USA)
Yes

MVD Comments:
Cindy Champion

Worcester, MA (USA)
Left
2004
No

No






Margaret Chin

(Singapore)
Left
2001
Yes
No
Yes
1
09/04/07
Dr. John Thomas
(Singapore)
Yes

Botox Comments: good for few months.

MVD Comments: Update as of 09/11/07 - Woke up “SPASM FREE” and remain so today. Immdiately after my operation I woke up with double vision which made me panic. But, as the day wore on, the double vision went away. If anyone is looking for a good neurosurgeon in Asia, I highly recommend Dr. Thomas.

Jeena Cho
Inactive Memb.
Tampa, FL (USA)
Left
2001
No

Yes
1
04/21/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes
MVD Comments:
Izzie Chow

Markham, Ontario (Canada)
Left
2004
Yes
No
No





Botox Comments: tried botox twice. the first time was effective. after the second treatment, my left eye would not close for 2 months, had to use gel and eye patch. will not use botox again
Toni Christiansen

Council Bluffs, IA (USA)
Right

No

No






Angela Church

Barboursville, WV (USA)
Left
2007
No

No






Miki Cicali

St. Nazainz, WI (USA)
Right
2007
No

No






Frank Cipollina

Rosedale, NY (USA)
Right
1989
Yes
No
Yes
1
08/23/99
Dr. Chandranath Sen
New York, NY (USA)
Yes

Botox Comments: After only 4 treatments, spread out 6 months apart, it no longer had the same effect. Decided not to get anymore after treatment of 8/98.

Post MVD Conditions - None
Kim Cisecki

Saskatoon, Saskatchewan (Canada)
Left
2004
Yes
No
Yes
1
09/24/07
Drs. Daryl R. Fourney & Stephen J. Hentschel
Saskatoon, Saskatchewan (Canada)
Yes

Botox Comments: Botox worked for a few weeks but left my left upper lip permanently paralyzed.

MVD Comments: Update as of 01/04/08: I had dizziness and a full ear for about a month after my surgery but otherwise I was back to normal. I was getting some spasms when I was stressed or very tired. I now consider myself to be 100% spasm free.

Elizabeth Clark
Inactive Memb.
Independence, MO (USA)
Left
2001
Yes
No
Yes
1
12/13/05
Dr. Jonathan Chilton
Kansas City, MO (USA)
Yes

Botox Comments: Botox once. Paralized side of mouth. It was effective.

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary".

Justina Clemons

Davidson, NC (USA)
Left
2003
No

No






Lori Cleveland

Albany, GA (USA)
Right
2003
No

No






Sue Cohen

Spring Valley, NY (USA)
Left
2005
Yes
No
Yes
1
06/29/09
Dr. Chandranath Sen
New York, NY (USA)
Yes

Botox Comments: Temporary partial improvement. Weakening of left side; expressionless; couldn't close eyelid for several weeks.

MVD Comments - Update as of 11/04/09 - I have occasional days of frequent middle ear “fluttering, and just this week I've had two small spasms. I'm so grateful for this new life.

For details, click here to see my "MVD Diary".

Louisa Cole
Former Memb.
San Antonio, TX (USA)
Left
1995
Yes
No
Yes
1
12/18/01
Dr. Felix Durity
Vancouver, B.C., (Canada)
Yes

Botox Comments: The Botox did help to decrease the spasms but it took a week or so to work following the injection. It also caused my face to appear asymmetrical due to the weakness induced by the Botox, ie. I had a droopy eye and looked half asleep after my first injection and after the second one I had a droopy mouth. I had to return for injections about every 4 months. They were somewhat painful and uncomfortable.

MVD Comments: I wish I had known about this support group during the time I was suffering with the condition. I felt completely alone and misunderstood. It even took my doctors years to figure out what was really the problem. In the last several days I have had the odd microscopic twitch on the left of my face (a year almost following my surgery) and I am paranoid that it may be the start of a recurrence, although from the research I have done recurrence following MVD is extremely rare.

Marge Collins

Palm Coast, FL (USA)
Right
2000
Yes
No
No





Botox Comments: After first series of injections, I had drooping eye and mouth. My eye would open when trying to sleep and mouth would drool. After 2 months it began to wear off. I have not used it again.
Sherrie Colyer

Kalispell, MT (USA)
Right

No

No






Myra Comrie

Saskatoon, Saskatchewan (Canada)
Right
2008
Yes
No
No





Botox Comments: made no difference
Deborah Congdon

Auburn, MA (USA)
Left
2005
No

No






William Conklin
Former Memb.
Beaufort, TX (USA)
Right
1996
Yes
No
Yes
2
12/01/03
Dr. Sunil Patel
Charleston, SC (USA)
Yes

Botox Comments: Botox treatments twice in 1996 - spasms stopped, but eye was droopy and would not close completely.

Post MVD Conditions - MVD #1 also with Dr. Patel on 04/14/03. Spasms decreased/stopped for about 10 days then returned completely if not worse than before. Significant vertigo for approx. 4 weeks; was given meclazine (sp?) which helped immensely. Vertigo free after 6 weeks. A major staph infection occured at the incision site which took 2 rounds of keflex and 2 rounds of cipro to clear up. Dr. Patel believes that the teflon patch must have slipped or pushed out of place due to the swelling associated with the staph infection. He is confident the 2nd MVD will be successful and will be pro-active and start super antibiotics immediately considering the infection from the 1st MVD.

Karol Conn

Highland, IL (USA)
Left
2000
Yes
No
No





Botox Comments: Worked for a couple of treatments then it was just hit and miss if they worked, then not at all. It has been almost a year since my last injection, I am now just beginning to be able to smile with the left side of my mouth.
Gerry Connolly
Former Memb.
Washington, DC (USA)
Right
1990
Yes
No
Yes
1
04/19/01
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: I started on Botox in 1992. I received injections 3-4 times a year over the next 10 years. The injections were above and below the eye, as well in the eyelid itself. When I started the injections, my doctor, Preston Calvert told me about the work that Dr Jannetta was doing in Pittsburgh. He even gave me reprints of articles written by Dr J. But being a devout coward, I opted for Botox instead of Dr J. If only I had opted for Pittsburgh 10 years ago, I would not have had such a tough time over this decade. The Botox left me with a frozen face for a week or so then loosened up and I got relief for 2 months, then I started to slide back until the rightside of my face was in spasm again.

Post MVD Conditions - None
Kay Cooney

Roseville, MI (USA)
Right
2004
No

Yes
1
02/09/09
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

MVD Comments: Update as of 04/09/09 – Two months after my MVD with Dr. Casey I can say I am “Spasm Free”! My spasms gradually got weaker over the weeks and now have been gone for a week or so. I do not have any hearing loss (my hearing was monitored during surgery), or other complications. I did have a "plugged up" feeling in my ears after surgery and I went to a Ear Nose and Throat Dr who took a good sized plug of dried blood from each ear canal. That helped a lot and the rest of the "full" feeling has gradually subsided. It is now only 8 months since I looked up "Facial Twitching" on the Internet and found the HFSA website and discovered that "HFS" was what I had. None of the Doctors I had complained to seemed to think anything of it. If it weren't for the Internet and your website I would probably still be twitching. I am very grateful to all of you for all I have learned! Thank you all!
Jamie Coplin

Hastings, MI (USA)
Left
2005
Yes
No
No





Botox Comments: The Botox did little for me. I only did one treatment and decided it was not for me. It left extreme sensitivity to light for several weeks and burning in the eye. It did not help much with the HFS at all and I did not like they way I looked with the Botox.

MVD Comments: Scheduled for MVD Consultation on 03/30/06 with Dr. Byron G. Thompson Jr, University of Michigan Hosp., Ann Arbor, MI (USA)

Donna Corkins

Miles City, MT (USA)
Left
1991
No

Yes
1
11/01/01
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Post MVD Conditions - Awoke from surgery with the spasms still there and, as of 12/09/03, they are worse than before surgery.
Laurie Corley

Cantonment, FL (USA)
Left
2005
Yes
Yes
No





Botox Comments: I'm on my first round of Botox(5 days ago) the neurologist said it could take up to two weeks to work as of now my face is still twitching.
Beverly Cox

San Antonio, TX (USA)
Left
1990
Yes
No
Yes
1
06/19/97
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

Post MVD Conditions - None

Wanda Covey

White Cloud, MI (USA)
Right
2004
Yes
Yes
No





Botox Comments: Botox eases the spasm, but only lasts 5-6 months. In my case helps a lot because it's driving me crazy. 1st time around whole side could not smile. 2nd around eye. eye droped for about 2wks then on one noticed.going for 3rd in January 2007.
Carolyn Cox

Plymouth, (United Kingdom)
Right
1975
No

No






Laura Cramer

Montgomery, TX (USA)
Right
1997
No

Yes
1
07/12/06
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

MVD Comments: What a joy it is to be able to read or sit at a computer without my nemesis showing its ugly little head! I think we often live with this thing until we actually forget what life was like before. But rather than it being hard to get used to, it's felt so natural and, most of all, so peaceful and calm.
Jill Crawford

Louisville, KY (USA)
Left
2004
Yes
Yes
Yes
1
11/03/05
Dr. Jonathan Hodes
Louiville, KY (USA)
No

Botox & MVD Comments: Update as of 11/3/08 - Spasms returned about 1 1/2 years after surgery. Not as bad as prior to the surgery but irritating enough to lead me to try Botox. I am still having spasms and am still taking botox injections about every 8-10 weeks.
Ann Cregan

Wyboston, Bedford (United Kingdom)
Left
2004
Yes
Yes
No





Botox Comments: Started April 2005. Slight reduction in intensity of spasms thus reducing pain but not yet on full dosage.

For details, click here to see my "Personal Botox Experiences".

Angela Cret

Buford, GA (USA)
Left
2003
No

No






Don Crohn
Former Memb.
Manchester, MO (USA)
Right
1997
Yes
No
Yes
1
03/12/03
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: 12 treatment sessions over 5 years. Botox worked some but keratitis in cornea, from lid not shutting, caused a lot of problems and spasm still continued. Discontinued Botox in January 2002.

MVD Comments: My surgery was 45 minutes of work after opening and the spasm completely gone upon coming out of anesthesia. I did develop a slight CSF leak through the nose a day after surgery and they inserted a lumbar drain for a day or two which seems to have done the job. I had a wound infection that surfaced 5 days after returning from Pittsburgh which necessitated an emergency trip back to UPMC. Dr. Kassam reopened, took cultures and closed. As of 5-2003 Just finishing antibiotic for the infection. Spasm still is gone which is the most important thing.

Sheffield Crosby
Former Memb.
Loomis, CA (USA)
Left
2006
No

Yes
1
07/31/08
Dr. J. Paul Muizelaar
Sacramento, CA (USA)
Yes
MVD Comments: Update as of 12/02/08 - The surgery seemed to be a success at first however on day 11 of recovery I noticed a change occurring and by day 13 I had full-blown Bells Palsy. I stayed positive and optimistic that it would fade away in 6 to 8 weeks and that the spasms would still be gone. I’m pleased to report that the Palsy has gone away and I remain “spasm free”.
Laura Crossley

Manchester (United Kingdom)
Left
2004
No

No






Deb Cuminotti

Avon, IN (USA)
Left
1984
Yes
No
Yes
1
08/06/09
Dr. Aaron A. Cohen-Gadol
Indianapolis, IN (USA)
Yes

Botox Comments: I've been getting botox in A injections for 15 years. Botox is a band-aid, and then I'm not sure which is worse, since I then am commonly asked if I have Bell's Palsy.My left eye won't close for about three weeks after my injections, which is very painful, and I continually bite my lip and jaw. I've tried doing without the shots, but the migraines increase, and I can't see for all of the twitching. I started having a reaction to the botox at my last doctor, breaking out in hives, and getting a rash. Every time I called, he said it wasn't possible. My next doctor told me it was very possible.

MVD Comments: Update as of 08/08/09 - Released from the hospital on 08/08, I’m home, doing well, with very little pain and spasm free.

Cindy Curran

Aberdeen, WA (USA)
Left
2003
No

No






Joyce Curran

Grand Island, FL (USA)
Right
1984
No
No
Yes
2
09/25/03
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments - From MVD #1 some hearing loss/affected balance. (MVD #1 was also with Dr. Jannetta on 01/11/01 & was Spasm Free for 29 months until 06/03 when all symptoms reappeared).
Connie Cutler

Palatine, IL (USA)
Right
1995
Yes
No
Yes
2
03/17/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: I hated it, the side effects were worse than the twitches. My eye closed for about a month and my mouth got droopy. I looked like I had suffered a stroke.

MVD Comments: For details, click here to see my "MVD Diary". (MVD #1 on 02/13/04 with Dr. George Bovis - Loss of upper tones of hearing on affected side).

Rodger Cutler

Beaverton, CO (USA)
Right
2000
Yes
Yes
No





Botox Comments: My right eye does not close as much during a spasm after the Botox treatment. The only side effect is mild muscular weakness.
CJ Czolba

Front Royal, VA (USA)
Right
1992
No

Yes
1
08/29/08
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes
MVD Comments: Update as of 11/12/08 - Had the following complications, Bell's palsy, numbness in three toes, reduced strength in left arm due to pic line that became infected. Even in spite of the complications, I would do it all over again. I feel that I finally have my life back after 15 years. I am not stared at like some freak show.
Kathrine D'Costa

Petersham (Australia)
Right
2006
No

No






Lori Daggett

Phoenix, AZ (USA)
Left
2004
No

No






Charlene Dane
Inactive Memb.
Toledo, OH (USA)
Right
1987
Yes
No
Yes
2
12/15/94
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: Some help, wore off in 6 wks. and kept my right eye from closing and made my face look funny.

MVD Comments - Severe hearing loss on right side after 1st MVD in July 1994 with Dr. Lovely. After the 2nd MVD was spasm free for 9 years until the spasms returned beginning August 2003.

Julie Dang
Former Memb.
Toronto, Ontario (Canada)
Left
1994
Yes
No
Yes
1
09/04/03
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: Botox injections from 2000 to Dec.2002. I had 4 injections in total. It helped at the begining but the last 2 injections I had to increase the dosage. Found the spasms had increased so I decided to have MVD but I had to wait for 9 months.

MVD Comments - There was a vertebra artery compression on my facial nerve entry zone region. RESULT - Total success, woke up NO SPASMS. Headache gradually gone about 5 weeks. Full ear (mild) about 7 weeks. Thanks Dr.Kaufmann,his team and "Circle of Friends".

Keith Davie
Former Memb.
England (United Kingdom)
Right
2000
Yes
No
Yes
1
02/11/04
Mr. Nigel D. Mendoza
London, England (United Kingdom)
No
Botox Comments: Tried Botox injections for one year. No real improvement after quarterly injections. No real side effects.
Alexis Davis

Richmond, British Columbia (Canada)
Both
2009
No

No






Carol Davis

Grayling, MI (USA)
Left
1998
Yes
No
Yes
1
10/05/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: It doesn't last long, maybe 6 weeks before the spasms become really annoying again. I didn't care for the way it affected my eye (open wide, not blinking like my right eye). Also, it affected my smile. I can't believe people have these shots for cosmetic purposes! I find them painful!!

MVD Comments: For details, click here to see my "MVD Diary.

Phyllis Davis

Crossville, TN (USA)
Left
1994
Yes
No
Yes
1
07/22/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: Effective but paralized the left side of the face.

MVD Comments: Spasm Free for 17 months.
Roxanne Davis

Oakland, NJ (USA)
Left
1995
Yes
Yes
No






Botox Comments: Have been receiving Botox injections since 1997,about 7 years.Over this period of time,it has slowed down the rate of the spasms. Pulling to the side of the mouth and cheek area happens with a much tighter hold. The spasms now are felt more inside. Partial relief has been varied, sometimes, 2,3,4, or 6 mos. depending upon each treatment. Have had temporary side effects such as some paralysis of mouth muscle,and double vision. Since the face muscle becomes tighter and the spasms occur more internally; self-image concerns in public are always on your mind.
Sue Davis

Channahon, IL (USA)
Right
2000
Yes
No
Yes
1
04/30/07
Dr. Gail Rosseau
Chicago, IL (USA)
No

Botox Comments: The first few treatments gave some relief; the past year, treatments have been ineffective. Final botox treatment was on 01/24/07.

MVD Comments: Scheduled for MVD #2 Consultation on 12/21/09 with Dr. Kenneth F. Casey, Oakwood Southshore Medical Center, Trenton, MI (USA) (MVD #1 with Dr. Gail Rosseau on 04/30/07).
For details, click here to see my "MVD Diary.

John Dayton

E. Northport, NY (USA)
Left
2007
Yes
No
No





Botox Comments: Botox injections helped reduce spasms a lot for three months but that was eight months ago and my mouth still isn't back to smiling on the left side.
Missy Dean

Sidney, OH (USA)
Right
2003
Yes
No
Yes
1
-3/25/09
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: was receiving Botox injections every 3 months with decreasing effectiveness, last injection was May 2008. Worked for 2 years.

MVD Comments: Update as of 03/26/09 - I woke up spasm free with no hearing loss! Dr. Sekula found a very large artery on the nerve and one smaller vein and was able to take care of both. I was discharged from Allegheny General today. My husband and I are spending the night in a hotel in Pittsburgh and will be heading for home tomorrow (4 1/2 hour drive). I think he is allowing me to head for home because my mom is a nurse and my family Dr. has one other patient who also had this surgery in Pittsburgh. My neck is very stiff and my head does hurt but the Percocets are helping by putting me to sleep!! I'm ready for a nice, peaceful recovery. Being spasm free is almost unexplainable - it is definitely the answer to my prayers and I will always be eternally grateful to Dr. Sekula for his skilled hands!

Steve Dean

Glenmore Park (Australia)
Left
20094
No

No






Delann DeBenedetti

Tucson. AZ (USA)
Right
2003
Yes
No
Yes
1
01/21/10
Dr. Amin Kassam
Santa Monica, CA (USA)


Botox Comments: Botox worked when only my eye was involved, not I've not had good results since the spread of the spasms. I have not had Botox since May as I feel it's time to have the MVD surgery.

MVD Comments:

Sean DeCiancio

Greenville, PA (USA)
Left
2008
No

No






Giacomo del Felice

Monza (Italy)
Left
1999
No

Yes
1
07/17/02
Dr. Calbucci
Bellaria Hospital, Bologna, Italy
Yes

Post MVD Comments: Frankly speaking, it’s really fantastic to have my face calm: I forgot what that meant. In addition to that, I also had a couple of other positive effects from my MVD: my blood pressure is now normal (I suffered from a mild form of blood hypertension) and my eyesight also has improved.
Joseph Delich

Fort Collins, CO (USA)
Left
2004
No

No






Ed Demo
Former Memb.
Vernon, NY (USA)
Right
1985
Yes
No
Yes
1
01/01/02
Dr. Chandranath Sen
New York, NY (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

Post MVD Conditions: Had a bout with meningitis but I am back on my feet

Zenaida Depadua

Chatsworth, CA (USA)
Left
2001
Yes
No
No





Botox Comments: Botox injection every 3 months since 4 years ago. For this long years I have been doing it I noticed that it is not doing me any good anymore. It is not really effective because my face expression, especially when smiling, is like a smirk. My face looks awful. My left eyelid has drooped a lot.
Maureen DeStefano

Hampton Bays, NY (USA)
Right
1997
Yes
Yes
No






Botox Comments: For details, click here to see my "Personal Botox Experiences".
Sue Deutser

Houston, TX (USA)
Left
1991
Yes
No
Yes
1
02/14/05
Dr. Richard Harper
Houst,TX (USA)


Botox Comments: Dry eye, drooping lower lid, trouble with eye not closing. Botox, mimimal help- trouble with eye staying open for over a month because of too much Botox.

MVD Comments:
Kristine Dishman

Folsom, CA (USA)
Right
2003
Yes
Yes
No






Botox Comments: Botox every 3 months for the last year has worked well but sometimes I over-respond and get weakness. My injectionist and I have discovered that the first time a new muscle area is injected I seem to get profound paralysis so now we do half the usual dose in any new area. The first time we treated my eyelid I couldn't blink for almost a month! But we've got that dialed in perfectly now. It is definitely an art and there is no "recipe" or one sizze fits all.
Suzanne Disse

Knoxville, TN (USA)
Left
1986
Yes
Yes
No






Botox Comments: Get Botax injections every three months. At first great, but now it only last about two months and makes my face stiff.
Dian Dimmery

Cardiff (United Kingdom)
Left
1997
Yes
Yes
No





Botox Comments: Treatment carried out approx. every 2 months. Good results around eye, but treatment of cheek, mouth and neck not very effective.
Carolyn Dingeldey

Westland, MI (USA)
Left
2001
No

No






George Dixon

Friendswood, TX (USA)
Left
1994
No

No






Simon Dixon

Santa Barbara, CA (USA)
Left
2004
Yes
No
Yes
1
09/26/07
Dr. John Alksne
La Jolla, CA (USA)
Yes

Botox Comments: I'm done with Botox. (Had what will be final shots a month ago) Aside from the pain of the procedure I hate the way it looks. Friends joke "wow Botox lucky you". And I say "yeah, I look like I'm great for my age aside from the stroke I appear to have had" Biting my lip and drooling are really helping my Boris Karloff routine though, so that's a bonus...

MVD Comments: Update as of 01/10/08 – Spasms completely disappeared after a few weeks. These days I sometimes get a tingling around my eye when I am stressed, but I used to get that before HFS and many others get it too. I would not think of it at all if it were not for my history.

Randall Dobbs

Kennesaw, GA (USA)
Right
1997
Yes
Yes
No






Botox Comments: I have had two heavy botox sessions with little or no benefit.
Bonnie Dodd
Former Memb.
Cranberry, PA (USA)
Right
1999
Yes
No
Yes
2
10/16/02
Drs. Kassam & Horowitz
Pittsburgh, PA (USA)
No

Botox Comments: Eye would not completely close. Cheek and lip movements increased. MVD Comments - MVD #2 with Drs. Kassam & Horowitz, UPMC, Pittsburgh, PA. (MVD #1 also with Drs. Kassam & Horowitz on 05/22/02).
Vickie Dodds

Columbus, OH (USA)
Right
2001
Yes
Yes
No






Botox Comments: Botox Comments: For details, click here to see my "Personal Botox Experiences".
Diana Dodge

Torrance, CA (USA)
Right
1980
Yes
No
Yes
1
05/15/97
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Once, which made my face stiff but did not control the spasm. Very counterproductive treatments.

MVD Comments: It was immediately effective and I was thrilled with the results. Update: 10/10/06 - I am starting to experience the same classic symptoms on my left eyelids, gradually increasing in intensity since Jan 2005.

Bill Donahue

Herington, KS (USA)
Right
1999
Yes
No
Yes
1
04/24/09
Dr. John Dickerson
Wichita, KS (USA)
No

Botox Comments: Botox Comments: It works for several weeks then wears off, short term relief.

MVD Comments: Update as of 04/29/09 - Lots of pain, nausea, vertigo, but the spasms around the eye were not as strong or persistant. Also found out I should not take morphine as it caused more nausea. Didn't eat well and 5 days later still not eating as usual. I am still having spasms ... not as severe and not as regular but I woke up this morning with spasms for several hours. My right ear is ringing louder but Dr. Dickerson says that is a good thing as that shows the eighth nerve is coming back. He told me that he had never seen a nerve as damaged as mine as the vessel had split the nerve and had snaked it's way along the length of the nerve. It is going to take longer than anticipated for recovery. Still dealing with the vertigo and some nausea and the appetite issue. Seems this is not quite a miracle cure, but I believe with time and patience I will get better and this ordeal will be worth it. Still praying and still hoping.

Charlene Donna

Indianapolis, IN (USA)
Right
2002
No

Yes
1
03/26/09
Dr. Aaron A. Cohen-Gadol
Indianapolis, IN (USA) Longview, TX (USA)
Yes

MVD Comments: Update as of 05/29/09 - I was not spasm free at first but I am as of today.
Richard Donnelly

Arlington, VA (USA)
Right
1992
Yes
No
Yes
1
04/04/01
Drs. Kassam & Horowitz
Pittsburgh, PA (USA)
Yes

Botox Comments: Was effective in the beginning when just the eye twitched. It was not helpful when the face became involved. I believe Botox may be useful for controlling blephorspasms but not particulary for HFS.

MVD Comments: For details, click here to see my "MVD Diary".

Alice Donohue

Lansing, MI (USA)
Left
1988
Yes
No
No





Botox Comments: Had two shots - the first one on 09/26/03 seemed to help. I hated the second one on 12/13/03 (terrible).

Click here to see my "Personal HFS History".

Veta Dowdy

Tallahassee, FL (USA)
Left
1994
Yes
Yes
No





Botox Comments: Botox works wonderful ...when I can get my insurance to cover it.
Jeff Downing

St. Louis, MO (USA)
Right
2000
Yes
Yes
No






Ann Doyle

Owensboro, KY (USA)
Right
1996
Yes
Yes
Yes
1
10/06/00
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: Takes Botox® for Blephrospasm, not MVD related. Very effective so far. I've only had it twice. Upper lip seems slightly numb.

MVD Comments - The continued spasms are the result of Blepharospasm.
Porcupine Dream

VA (USA)
Left
1996
No

No






Bonnie Driskill
Inactive Memb.
Kingwood , TX (USA)
Left
2003
Yes
No
Yes
1
07/09/07
Dr. Richard Harper
Houston,TX (USA)
Yes

Botox Comments: Not satisfactory. The injections either had little effect or had too much effect in controlling the spasms. Too much Botox left eye wide open and side of face flat. It did, however, help with the neck spasms. MVD Comments: As of 07/13/08 - At this time I do not have any spasms and feel wonderful. The spasms were really bad right after the surgery and for 6 months after. Then they were completely gone for 2 months and then returned only when I talked or smiled (social oppression). For the last 3 weeks, I have not had any spasms and everything seems completely "normal". I love it!
Miriam Drysdale

Plockton, Scotland (United Kingdom)
Left
2001
No

Yes
1
12/11/07
Prof. Hugh Coakham
Bristol, England (United Kingdom)
Yes

MVD Comments: Update as of 12/24/07 - MVD was successful, I have no spasms and I'm feeling fine. However, I have temporary facial palsy which I'm sure will go away very soon.
Feza Duchaine

Huntington Beach, CA (USA)
Left
2007
Yes
Yes
No





Botox Comments: tried botox recently, left eye completely closed, still not totally normal.
Hélčne Ducharme

Ottawa, Ontario (Canada)
Left
1986
Yes
No
Yes
3
03/27/02
Dr. Kassam
Pittsburgh, PA
Yes

MVD Comments: (2nd MVD 03/14/01 also with Dr. Kassam; 1st MVD 09/30/99, Dr. Gentili, Toronto (Canada)).
Kay Duffy

West Jefferson, OH (USA)
Left
1990
No

No






Steve Duffy

Lumberton, NC (USA)
Right
1992
Yes
No
No





Botox Comments: Botox Comments: For details, click here to see my "Personal Botox Experiences".
Gwendolyn Duncan

Palm Coast, FL (USA)
Right
2006
No

No






Julie Duncan

Brockton, MA (USA)
Right
2004
No

No






John Dunn

Downingtown, PA (USA)
Left
2004
Yes
Yes
No





Botox Comments: Just had first Botox A shots end of September 2005, still have some effects - to early to know - no side effects yet.
Karen Dunn

Cincinnati, OH (USA)
Left
1989
Yes
No
Yes
1
11/17/04
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: I have had Botox injections for the past 5 years with much success. I have a wonderful neurologist, Dr. Zadikoff, who placed the shots just right. However, he noticed that I was beginning to have facial weakness and urged me to have the MVD that I have been putting off.

MVD Comments:

Cecilia Durand

Brussels (Belgium)
Left
1998
Yes
No
Yes
1
07/16/07
Prof. Jacques Magnan
Marsielle (France)
No

Botox Comments: I had botox for 3 years. I had the injections every 3 months and had my last ones 3 months before MVD. I could not live without them but hated how my HFS eye would dry and the fact that it paralysed my HSF side and I could not smile properly.

MVD Comments: Update as of 02/10/08 - Update as of 02/10/08 - Not spasm free yet. However the spasms are not as bad as before MVD, but they still bother me quite a lot.

Debbie Durham

Marshall, TX (USA)
Right
2006
No

Yes
1
11/06/08
Dr. Thomas Chow
Longview, TX (USA)
No

MVD Comments: Update as of 03/08/09 - Approxiamately 1 month after MVD, the spasms started to return. At first, slowly, until now, March 2009, they are almost constant. Still only on the right side. Dr. Chow thinks they may calm down, and I will see him in May 2009. Another MVD could be necessary.
Jessica Dyer

Lima (Peru)
Left
2004
Yes
No
Yes
1
09/14/07
Dr. Alberto Trelles
Lima (Peru)
Yes

Botox Comments: I really use it for sthetic, but also help me to diminish in some way the spasm in the upper side. None since December 2006.

MVD Comments: Update as of 09/22/07 - One week post-op I can say it was successful. I stayed in the Clinic about 5 days, and I'm now back at home, feeling good. The only issue is that I have hearing loss in my left side that makes me disoriented. I have very little mild spasms, that are very infrequent, and the doctor told me that it would disappear at any moment. Today I still have headaches, mainly in the morning, but I don't have migraines, metal taste or facial paralysis. I can say I'm now “SPASM FREE”.

Sharon Dyrland

Dunkirk, MD (USA)
Left
2006
Yes
No
Yes
1
07/01/09
Dr. Michael Horowitz
Pittsburgh, PA (USA)
Yes

Botox Comments: Very effective for around 2 months - eye gets dry, irritated for a week after injection.

MVD Comments: Update as of 10/01/09 - I made it through the operation with flying colors and woke up and continue to be spasm free!! However, I have no measureable hearing in the MVD ear. Unfortunate, but I knew the risks going in. It is still worth it to be spasm free!

Wayne Earle

Red Deer, Alberta (Canada)
Left
1990
Yes
Yes
No





Botox Comments: 50-75% effective, double vision for a month, dryness of the eye, eye has closed on occasion.
Carol Eaton

Washington, MI (USA)
Left
1985
Yes
No
Yes
1
05/12/06
Dr. Daniel Pieper
Southfield, MI (USA)
Yes

Botox Comments: Botox quieted the twitches but of course I have facial drooping and lop sided smile. Sometimes I just had the botox around my eye so that I didn't have too much droop and could still smile a bit. I've had botox since 1993.

MVD Comments: For details, click here to see my "MVD Diary".

Jonathan Edwards

Hendersonville, NC (USA)
Right
2006
Yes
Yes
Yes
1
06/27/08
Dr. Anthony Asher
Charlotte, NC (USA)
No

Botox Comments: Don't like Botox. The first treatment worked okay but made the right side of my lip droop and I couldn't smile. The second treatment has closed right eye.

MVD Comments: Update as of 07/05/08 – I would like to say the spasms are better. I'm not really sure they are. They seem more infrequent. I didn't have a single one yesterday but they were back today. I'm keeping a positive attitude on that front. The doctor basically told me when I was discharged that the vessel splits in two and really is tangled with the auditory nerve. He stopped messing with it when the auditory nerve showed stress. He is pretty confident he could stop the twitching but it would pretty much involve losing hearing. We are discussing this during the appointment. So it's possible I'll be having another MVD in 4-8 weeks. That would be done to avoid going through scar tissue. All in all my spirits are good and I'm get along much better than I expected.

Ann Ehlen

Glenmora, LA (USA)
Left
1995
Yes
No
Yes
1
05/13/02
Dr. Anil Nanda
Shreveport, LA (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary".

Paula Ehrenberg

Taylor, MI (USA)
Left

No

No






Margy Ehrenfried

Norfolk, NE (USA)
Right
2001
Yes
No
Yes
1
11/10/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments:
Matthew Eischen

Plainfield, IL (USA)
Right
1998
No

No






Steve Eiseler

Traverse City, MI (USA)
Left
2007
Yes
No
Yes
1
09/17/08
Dr. Kenneth F. Casey


Botox Comments: Work in progress.

Click here to see my "Personal HFS History".

MVD Comments: Update as of 10/08/08 - I had five offending vessels and Dr. Casey was able to reduce the lateral spread by 50% during the procedure. I was released to return home the next day. Unfortunately I was one of the 5-8% to develop aseptic meningitis a week after surgery. My understanding is the condition was caused by an allergic reaction to the teflon felt material used to pad the nerve. After being on a heavy dose steroid for a few days I developed irregular heart beats and the dose had to be reduced. I was able to return to work a few hours today and plan to return full time next week. I lost some hearing on my MVD side but hopefully it is temporary and in fact it has improved over the last 3 weeks. As far as the spasms are concerned, the only thing that I have noticed is a slight pull at the corner of my mouth occasionally. Dr. Casey wants to give both the hearing and the spasms a full 12 week recovery period before we make any judgements on either.

Click here to see my "MVD Diary.

Anne El Shazli

Washington, DC (USA)
Left
1993
Yes
No
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Art Elmhirst

London, Ontario (Canada)
Right
2000
No

Yes
1
01/19/04
Dr. Gary Ferguson
London, Ontario (Canada)
Yes

MVD Comments: The operation appears to be a success, no twitches since I awoke from surgery. Severe pain and nausea after effects for the first 4 or 5 days, and some difficulty swallowing, but they are now disappearing and I expect eventually they all will go.
Catherine Elsey

Billings, MT (USA)
Left
2002
Yes
Yes
No





Botox Comments: Worked first time, second time it cause my left cheek and left of mouth to droop.
Arthur Elvidge

Perth (Australia)
Left
2001
Yes
Yes
No





Botox Comments: 90% effective in reducing spasms. Soreness remains. Can't fully close left eye.
Matt Emanuelsen

Rockwood, MI (USA)
Left
2000
Yes
Yes
No





Botox Comments: Updated as of 01/25/10 - Works well for me after a lengthy process for the Dr. to find the correct injection sites and the right dosage. I am very pleased with the results at this point in time and have no plans for an MVD unless my situation changes. My HFS has become continualy worse over the years but I am able to get releif through Botox injections approx. every five months or so.
Sandra Emond

Knoxville, TN (USA) Plainfield, IL (USA)
Right
2003
No

No






Makerita Enesi

Pago Pago, HI (USA)
Left
1993
No

No






Donna Eng

Vancouver, British Columbia (Canada)
Left
1994
Yes
No
Yes
2
06/12/01
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: Started using April 1997 for 2 1/2 years. Effective in the beginning in subduing the twitches. Progressively needed larger doses and more injection sites. With the larger doses, I experienced difficulties in controlling my face (ie. facial weakness, droopy eye and lips).

MVD Comments - Spasm Free following 2nd MVD (1st MVD 06/22/00 also with Dr Kaufmann).
Judy Ensor

Honaker, VA (USA)
Left
2004
Yes
No
Yes
1
09/09/09
Dr. Michael Horowitz
Pittsburg, PA (USA)
Yes

Botox Comments: Worked for a while but left my face drooping. Looked like I had a stroke. I now have to wait 9 months from my last botox injection before I can have my MVD.

MVD Comments: Update as of 09/19/09 - Woke up from surgery spasm free!! Had slight headaches & nausea first few days. Got appetite back used very little Tylenol for pain. Then, eight days after surgery, started getting really killer headaches nausea and vomiting. I had been taking it easy and hadn't done anythng to cause this. Went to local hospital this morning at 2am had CT scan to check for leaks or bleeding. CT scan clear Doctor found nothing wrong.

Tracy Ervin

Knoxville, TN (USA)
Right
2000
Yes
No
No





Botox Comments: I have been having Botox shots since January 2005. Worked for a while, but now my body is rejecting.

MVD Comments: Update as of 07/17/07 - Cancelled previously scheduled MVD for 08/08/07 with Dr. Peter J. Jannetta, Allegheny General Hospital, Pittsburgh, PA (USA)

Sharon Erwin

Las Cruces, NM (USA)
Right
1996
Yes
No
Yes
1
12/09/02
Dr. David Masel
El Paso, TX (USA)
Yes

Botox Comments: Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: For details, click here to see my "MVD Diary".

Marisa Esquibel

Murrieta, CA (USA)
Right
1992
No

No






Nancy Eutsler

Allentown. PA (USA)
Left
2007
Yes
Yes
No





Botox Comments: Twitching stopped but I was very unhappy with the side effects: left eye wouldn't close completely for several weeks and drooping left side of face, and these were with minimal doses. Twitching returned, tried new doctor for Botox. Had shots around eye and cheek, then my entire left side of mouth drooped for two months. Two attempts at Botox, not happy with either result but now the spasms have gotten worse.
Ronald Evans

Bay City, MI (USA)
Left
1994
Yes
No
Yes
1
04/22/02
Dr. Byron G. Thompson
Ann Arbor, MI (USA)
Yes

Botox Comments: Very effective for the first few years-- somewhat less right now.
Jim Evridge

Pennsville, NJ (USA)
Right
1994
Yes
Yes
No





Botox Comments: A few years ago I tried Botox injections. The spasms ceased, but, people wanted to know when I had a stroke. Because of the injections my face appeared to be paralyzed. I vowed then that I would never have the injections again. However, the spasms are now occuring more frequently and I am becoming more and more reclusuve because of them.

Click here to see my "Personal Botox Experiences".

Jamie Ewing

Seattle, WA (USA)
Left
1991
Yes
No
Yes
2
07/09/09
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Somewhat successful now that they have gotten the strength right.

MVD Comments: Update as of 08/25/09 - On 07/09/09 I had my MVD #2 Dr. Jannetta and The surgery was a success and was a much easier recovery than the first MVD 10 years ago. After 20+ years the twitch is now gone and I am spasm free for the first time. I cannot begin to tell you what this group has meant to me. It is because of this group that I was able to take this journey to a life that will exist without spasms. (MVD #1 on 09/16/98 with Dr. Elizabeth Bullitt was not successful).

Sassa Ewing

Stockholm (Sweden)
Left
2007
Yes
Yes
No





Botox Comments:
Christa Falgout

Houma, LA (USA)
Left
2005
No

Yes
1
02/08/06
Dr. Rand Voorhies
New Orleans, LA (USA)
Yes
Botox Comments: I found this place and researched alot, and came to realize Botox is not for me, as I like my face and cannot see paralyzing it with that poison. Learned alot that goes with the paralysis that I never thought about, such as drooling. Can not see not being able to smile the at my babies without the smile they know and love.

MVD Comments:

William Farly

Tampa, FL (USA)
Left
1999
Yes
No
Yes
1
09/16/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Working fairly well, and have little or no spasams 80% of the time.

MVD Comments: Update as of 09/03/07 - It took almost 3 years for my face to calm down to no spasms, I am now "SPASM FREE. Thank Dr. Jannetta and Dr. Casey very much, you are a gift to us. (As of 09/05/06, still trying to recover. I feel dizzy and tired most of the time and still have some spasms. Had a CFS leak complication during my MVD and I believe this may have added to problems and made the healing process much more difficult. I also am suffering vertigo, loss of hearing and cognitive deficits and confusion. I have been to several rehabilitation centers for this and they taught me to cope with these complications to some degree. I’m still seeing neurologists and continue in my therapy).
C Farrell

Surrey, British Columbia (Canada)
Left

Yes
No
No





Botox Comments: No side effects but no change in condition (had 4 treatments).
Jen Farrell

Edison , NJ (USA)
Right
1970
No

No






Karen Faughn
Inactive Memb.
Gilbertsville, KY (USA)
Left
1996
Yes
No
Yes
1
04/03/07
Dr. Peter Konrad
Nashville, TN (USA)
Yes

Botox Comments: Lasts about 3 months - works around eye area... and we know what happens if we get injections on the lower part of the face - we just drool & droop.

MVD Comments:

Pamela Feader

Prince, Saskatchewan (Canada)
Right
1981
No

Yes
1
07/11/89
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Post MVD Conditions - They did accidently paralyze one of my vocal chords, but after what I'd been through, I didn't care.
Diana Fell

Sayre, PA (USA)
Left
1980
Yes
No
Yes
1
08/22/05
Dr. Khalid A. Sethi
Johnson City, NY (USA)
No

Botox Comments: Didn't like it. Paralized the whole side of my face. No control over drooling.

MVD Comments: It took 3 months after my MVD for it to happen, but I am "SPASM FREE"! YIPPPPEEEE!

For details, click here to see my "MVD Diary".

Virginia Felts

Aberdeen, WA (USA)
Right
2001
Yes
No
No





Botox Comments: Does not help much
Donna Ferguson

Gardendale, AL (USA)
Left
2008
No

No






Gail Ferguson

Revelstoke, British Columbia (Canada)
Left
2005
No

Yes
1
10/03/07
Dr. Gary Goplen
Kelowna BC, (Canada)
Yes

Click here to see my "Personal HFS History".

MVD Comments: Update as of 10/09/07 - I am home and recovering after my MVD. Recovery is challenging however I am pleased to report that I have been "SPASM FREE" since waking up from surgery!!

Click here to see my "MVD Diary.

Russ Fischels

Independence, IA (USA)
Left
2007
No

No






William Fischer

Denver, NC (USA)
Right

No

No






Shirley Ann Fisk

Midlothian, VA (USA)
Left
1988
Yes
No
Yes
1
02/25/99
Drs. Jannetta & Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: First time I had Botox injections my upper eyelid drooped for about six weeks. I was so distressed, I didn't try Botox again for another two years. Then I started getting Botox injections every 3-6 months for about 5 years. My face drooped to the point where some thought I had had a stroke. As the Botox became less and less effective, I started to think about MVD.

Post MVD Conditions - None
Jennifer Fitter

Mission Viejo, CA (USA)
Right
1996
Yes
No
Yes
1
11/15/06
Dr. Hrayr K. Shahinian
Los Angeles, CA (USA)
Yes

Botox Comments: Helped movement but still felt the sensation of spasms. I stopped Botox 5 months ago because I am looking into MVD.

MVD Comments: Update as of 05/18/08 - 1 1/2 years post-op I am dong so well. I still continue to have ringing on the MVD side but as the audiologist said I would get used to it. In quiet moments such as night time sleep, I need to have some sort of white noise such as a fan or low volume TV. I have adjusted to the hearing loss. Now married almost eighteen years I am so blessed to be where I am. Some people have contacted me from this site and I pray I have been of some help. I know when I was contemplating surgery I contacted some on the list and every one was eager and willing to support and help me. God led me to this site and has used this site to help me and for that, I am so thankful. So far still totally "SPASM FREE".

Cathleen Fitzbach

Quebec (Canada)
Left
1999
Yes
No
No





Botox Comments: No side effects. I'm waiting for results of electromyogram exam I'll have in febuary 2002 for another Botox treatment in larynx and jaws. Comments: Tired Out of pain...!!! Lost more than 15% pound; I'm 84 pounds now. Very weak. Very anxious to have Botox at the right places and expect a real and durable amelioration for stopping morphine. Want to have a more useful life; I'm too young to stay in bed all the time!!!
Jill Flamand

Fort Frances, Ontario (Canada)
Left
2009
No

No





MVD Comments: Had a MVD Consultation on 07/20/09 with Dr. Anthony Kaufmann,Health Sciences Centre Hosp., Winnipeg, Manitoba (Canada)
Bill Fleming

Peachland, British Columbia (Canada)

1985
Yes
No
Yes
1
12/09/02
Dr. Chris Honey
Vancouver, BC (Canada)
Yes

Botox Comments: "frozen face", biting inside of mouth and lip, people thought I had a stroke at times. However it did help the twitch. I just couldn't smile at all. I had botox treatments for about 10 years, every 4 months or so. Last one Nov. 28 2001. Without botox, at least I can smile when the face is not acting up.

MVD Comments: For details, click here to see my "MVD Diary".

Jennie Flood

Clay, NY (USA)
Left
2002
Yes
No
Yes
2
11/11/06
Dr. Charles Hodge
Syracuse, NY (USA)
Yes

Botox Comments: First shot, worked about three months, but did not totally stop spasms. Second shot, dose increased, but did not work at all.

MVD Comments: Update as of 11/24/06: Vertigo, ringing in ears, dizziness, walk is still effected, still only 6 weeks out of surgery, deaf in left ear, dry eyes, head ache, eyesight is blurry at times and cannot focus. First surgery did not work and was a total nightmare! Second surgery a success but I'm still recouperating. No spasms .

Pamela Floyd
Inactive Memb.
Balgowlah, (Australia)
Left
1989
Yes
No
Yes
1
10/23/01
Prof. Michael Besser
Sydney, Australia
Yes

Botox Comments: Very effective-injections every 3 months.

Post MVD Conditions - Update as of 03/21/05 - Absolutely thrilled at this stage to report that I am 95% spasm free after having the op in Oct 01. Went off botox in June 2004. Spasm free after 3 years! Each year gets better!

Elaine Fontes

Lehigh Acres, FL (USA)
Right
2004
No

No






Kay Ford

Wollongong (Australia)
Left
2002
Yes
Yes
No





Botox Comments: First time it looked like I had a stroke, took a while for the effect to wear off, I insist for the smallest dose now, but it still effects my smile and I hate that.
Ted Fontenot

Many, LA (USA)
Left
1997
Yes
Yes
No





Botox Comments: Visited neurologist who had no clue, had MRI and even did spinal tap. Finally was recommend to see opthamologist who diagnosed my problem immediately and started me on Botox injections. Have Botox injections every three months which keep my left eye from closing, but I’m still experience twitching, especially when trying to sleep. Closing my eyes seems to accelerate twitching.
Richard Forrester

Alexandria, va (USA)
Left
2006
No

No






Dawn Francis
Inactive Memb.
Kaukauna, WI (USA)
Left
2004
Yes
No
Yes
1
10/06/05
Dr. Philip Yazbak
Neenah, WI (USA) Sydney, Australia
No

Botox Comments: Helped for a short time. it seems that the long term side effects for most people have out weighed the benefits.

MVD Comments: Update as of 01/07/06 - I think I am still in the process of healing, I have some hearing (or tone) loss and the twitch remains.

Valerie Frank

Fremont, CA (USA)
Right

Yes
Yes
No





Botox Comments: I have had one session of five injections around the eye which has minimized the spasms on the eye and cheek area.
Mary Jane Fraser

Bellingham, WA (USA)
Left
1999
Yes
Yes
Yes
1
01/22/03
Drs. Kassam & Horowitz
Pittsburgh, PA (USA)
Yes

Botox Comments: I have tried botox with increasing ineffectiveness. I have never had a treatment that got me anywhere near normal.
Darlene Frederick

Clinton, MI (USA)
Right
1999
Yes
No
Yes
1
05/08/03
Dr. Peter J. Jannetta
Pittsburgh, Pa (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary".

Vicky Frederick

Nash Point, (United Kingdom)
Right
1967
No

No






Judy Frederickson

St. Louis, MO (USA)
Left
1997
Yes
Yes
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Val Freeman

Manly West Qld (Australia)
Right
2000
Yes
Yes
No





Botox Comments: Only one treatment. Has stopped eye twitching, but I can still feel the spasms. Blurred vision at times
Mike Frey

Lititz, PA (USA)
Left
1994
Yes
No
Yes
1
05/20/99
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: I didn't like the effect of the Botox, and as time went on, the spasms got worse, Botox was ineffective at supressing them.

MVD Comments: For details, click here to see my "MVD Diary . 100% hearing loss in left ear, associated tinnitus and balance issues. My active life remains unchanged. Since MVD, I began riding motorcycles after 18 years of non-riding. Recently got private pilot's license after 30 years of waiting.

Bridget Frohreich

Mt. Gilead NC (USA)
Left
1976
Yes
Yes
Yes
2
03/04/86
Dr. Horace Norrell
Sarasota, FL(USA)
No (Was for 11 years)

Botox Comments: For 6 1/2 years had the same neurologist who did a wonderful job of administering it and no problems. She moved out-of-state and the new one did my last Botox injections and got some in the muscles that control the movement of the eye. Also instead of the eye drooping just a tad the lid and area below the brow is now hanging 2/3s down over the eye. I am having double vision with both eyes opened. Went to eye doctor and he explained that the muscles in the injected side are moving slower than my right side thus the double vision. Only cure is to wear eye patch and wait until the Botox wears off.

MVD Comments: Was Spasm Free after MVD #2 for 11 years. MVD #1 in 04/78 with Dr. Ira Hardy, Greenville, NC (USA). I would encourage anyone to try MVD. The surgery has come a long way since I had it way back then.

Pam Fruth

Villa Park, CA (USA)
Left
2000
Yes
Yes
No





Botox Comments: The botox has been very effective. It lasts 3 to 4 months.
Bernard Fry
Former Memb.
Wichita, KS (USA)
Left
1998
No

Yes
1
11/29/01
Drs. Kassam & Horowitz
Pittsburgh, PA (USA)e
Yes

Post MVD Conditions - Hearing loss in left ear, balance is improving, swallowing reflex is slowly coming back.
Janie Frye

Villa Hills, KY (USA)
Both
1995
Yes
No
Yes
1
05/08/01
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments:

MVD Comments: Further to the MVD, a chiari surgery was performed by Dr. Kassam in April 2004 which was successful; some resulting hearing loss.

Susan Fujita

Roanoke, VA (USA)
Left
2004
Yes
No
Yes
1
07/13/09
Dr. W. Jeffrey Elias
Charlottesville, VA (USA)
Yes

Botox Comments: First time resulted in whole left side of my face drooping. Looked like I had a stroke. The next time I couldn't close my left eye.

MVD Comments: Update as of 11/22/09 - Five weeks after my surgery I developed an infection at the wound site. On 09/05/09 I had another surgery to take out the titanium mesh and all foreign material. Currently am spasm free.

Maura Fulton
Former Memb.
Bangkok,(Thailand)
Right
1992
Yes
No
Yes
1
07/23/03
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: I began Botox treatments once in the United States. Result was that I could not close my right eye very easily. Spasms were reduced very slightly. Moved to the former USSR and could not continue treatments.

MVD Comments: For details, click here to see my "MVD Diary.

Jay Gadhvi

New York, NY (USA)
Left
2004
No

No






Liz Gaffney
Former Memb.
Fair Oaks, CA (USA)
Left

Yes
No
Yes
1
09/17/98
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: I would have the surgery again if needed. I was spasm free when I woke up. The surgery gave me a new life.
Madelyn Galgano
Former Memb.
Sayville, NY (USA)
Right
1997
No
No
Yes
1
06/15/04
Dr. Raphael Davis
Stonybrook, Long Island, NY (USA)
Yes

MVD Comments: Update as of 06/26/07 - spasms stopped about 6 months post-op.
Sally Gallagher

Mays Landing, NJ (USA)
Right
2006
Yes
No
Yes
1
08/15/07
Dr. Amin Kassam
Pittsburgh, PA (USA)
No

Botox Comments: On my 3rd injection, injected via machine which indicates when nerve is hit, seems to be more precise, unfortunately not lasting long, Dr. injects in left side as well to even out, but still leaves me with a "crooked" smile.

MVD Comments: Update as of 04/26/08 - Scheduled for MVD #2 Consultation on 05/15/08 with Dr. Eric Zager, University of Pennsylvania Hospital, Philadelphia, PA (USA). . I experienced a few days of very mild spasms immediately after surgery, then they started up again. Some days they are pretty bad, other days they are barely noticeable. Dr. Kassam said this is normal and can take months to see results. Dr. Kassam was concerned with my outcome due to having Botox at 6 month prior to surgery, but he did find a very large artery looped around the nerve. I have had bad headaches and have returned to Pittsburgh for a follow up with my surgeon on 09/11/07.. Another cruel twist of fate is that I have developed twitches on the opposite side, starting around my cheek/nose a couple months ago, it seems to be getting more intense. I am looking for a new neurologist to find out what is going on with this. (MVD #1 with Dr. Amin Kassam on 08/15/07)

Judy Galland

Cottonport, LA (USA)
Left
1998
Yes
No
Yes
1
01/26/09
Dr. Anil Nanda
Shreveport, LA (USA)
Yes

Botox Comments: Botox - is not being as effective - only lasts for about 1 1/2 months now. I had my last botox on November 18, 2008.

MVD Comments: Update as of 02/14/09 – I am spasm free - both eyes are opening and closing the same with no pulling or twitching of face, I have lost hearing, not a full loss, but I believe it will be a lot. I am walking more and still have a big problem with balance. I’m taking it one day at a time. I just feel so peaceful – it’s a blessing.

Julie Gallucci

Convent Station, NJ (USA)
Left
2006
Yes
No
Yes
1
01/28/09
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox was effective. However, my eyelid would droop horribly.

MVD Comments: For details, click here to see my "MVD Diary".

Marco Gandolfo

Sevenoaks (United Kingdom)
Right
2001
No







MVD Comments - Awaiting date for MVD Consultation with Dr. Peter Bullock, Kings College Hospital, London, England (United Kingdom)
Sondra Garcia
Inactive Memb.
Erwin, TN (USA)
Right
1988
Yes
No
Yes
1
08/09/00
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Had Botox injections twice. First time the whole right side of my face was bruised for several weeks. The spasms decreased but returned in about 2 months. Had second Botox treatment. This time no bruising but it only lasted about 3 weeks. Decided it was not worth the time and money. Also had a droopy mouth.

MVD Conditions - Sometimes have an achy feeling in my head at the incision area, but, I feel like a real success story. If I should ever be afflicted again, I would not hesitate to have the surgery. (12/13/03)

Lisa Gardner

Sydney (Australia)
Right
2004
Yes
No
Yes
1
11/02/09
Dr. Jeffrey Brennan
Sydney (Australia)
Yes

Botox Comments: Has been effective in the past but the last time it did not seem to be that effective and still experienced spasms.

MVD Comments: Update as of 11/22/09 - Suffered with HFS for 5 years before my MVD. The surgery went well and I woke up spasm free and remain that way. The surgeon told me that there were three areas of compression along the facial nerve - a blood vessel was actually running along the nerve, there was also a vessel compressing the nerve at the top and finally a group of arteries at the bottom of the nerve. He detailed that all these areas were moved away from the nerve and seperated with Teflon. I have encountered a partial loss of hearing in my right ear, despite the fact that my hearing was monitored during the entire procedure. Where hearing is monitored it allows the surgeon to pause what they are doing to avoid any damage. Towards the end of the surgery a loss of hearing was noticed however at this stage the surgeon was closing up and nothing was happening around the 8th nerve so no action could be taken. The surgeon had mentioned that the hearing may possibly improve in time. My energy levels are starting to return now, my recovery was also complicated by the fact I developed a kidney infection so had fever and a lot of pain. But I have experienced very little pain due to the actual surgery and my incision is healing really well.

Chuck Garot

Naples, FL (USA)
Right
1993
Yes
Yes
No





Botox Comments: Started Botox A about March 2000. The effects were greatly varied due to me trying different providers. Most were unfamilar with HFS and the treatment of same. Also Botox was just coming on the scene, and then was mainly cosmetic. I jumped around until I found an administrator who I was happy with. I think Botox is at best hit and miss. I am still on Botox but feel the effectiveness lessening and the resistance growing. I may look into Botox B to see if it could be a replacement for the A Toxin.
Ellen Garinger
Former Memb.
El Segundo, CA (USA)
Right
1997
Yes
No
Yes
1
08/01/00
Dr. Takanori Fukushima
Raleigh, NC
Yes


Chuck Garot

Naples, FL (USA)
Right
1993
Yes
Yes
No





Botox Comments: Started Botox A about March 2000. The effects were greatly varied due to me trying different providers. Most were unfamilar with HFS and the treatment of same. Also Botox was just coming on the scene, and then was mainly cosmetic. I jumped around until I found an administrator who I was happy with. I think Botox is at best hit and miss. I am still on Botox but feel the effectiveness lessening and the resistance growing. I may look into Botox B to see if it could be a replacement for the A Toxin.
Vip Garrido

Taguig (Philippines)
Right
2003
No

No






Sheila Garske

Wausau, WI (USA)
Right
1992
Yes
No
Yes
1
12/27/05
Dr. Michael Link
Rochester, MN (USA)
Yes

Botox Comments: Botox injections started in 1993 - hasn't been too helpful the last few years. Haven't had an injection since Feb 2005....my right eye stays closed for too long of a period now so I need to find a Doctor for injections......mine moved away.
Fiona Gavriel

Wellington (NEW ZEALAND)
Left
2001
Yes
Yes
No





Botox Comments: Botox - seems effective but only had it twice. Have just had a cataract operation which hasn't gone well - not sure if there is a relationship.
Chito Gayamat

Pasig City (Philippines)
Left
2009
No

No






Marty Geeves

Hobart (Australia)
Left
2005
Yes
No
Yes
1
05/20/08
Mr. Andrew Hunn
Hobart Tasmania (Australia)
Yes

Botox Comments: Eyelid lag lasting 6 to 8 weeks both times I have used Botox it's embarassing.

MVD Comments: Update as of 08/27/08 – Remain dizzy 13 weeks post-op although slowly improving. My spasms subsided for 10 weeks but now they are back bigger and bolder than before surgery. Damn, can I say that? Spasms and still dizzy from op.... things can only get better.

Jason Geisinger
Inactive Memb.
Cockeysville, MD (USA)
Right
2002
No

Yes
1
12/04/02
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

MVD Comments:
Julie Genovese

Dover, NJ (USA)
Left
1986
Yes
No
Yes
1
01/29/03
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox helped at first and was a partial relief. I used it for 3 years every 2 months. It did not take away the HFS but it lessened the intensity.

MVD Comments: For details, click here to see my "MVD Diary".

Carol George

Fayetteville, PA (USA)
Right
2005
Yes
Yes
No





Botox Comments: no side effects; reduces eye twitch but not mouth
Edward Gereis

Cairo (Egyp)
Right
1999
Yes
No
No





Botox Comments: Very short period of relief (3 months). Drooping eye lid & weakness of cheek muscle.

MVD Comments: Was scheduled for MVD on 10/14/08 with Prof Hugh Coakham, Glen Bupa Hospital, Bristol, England (United Kingdom), but surgery was cancelled.

Sandra Gerstner

Hillsborough, NC (USA)
Left
2000
Yes
No
Yes
1
08/28/08
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA).
Yes

Botox Comments: Have discontinued Botox. Left facial muscles weakening and only had side effects (drooping face, crooked smile, etc.) Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: Update as of 09/13/08 - After I got home on 9/2/08, I was pretty well tuckered out. Starting early Saturday morning I was having chills, fever, nausea, pressure and pain around my forehead and base of my skull. About 1:30 PM I called Dr. Sekula, who answered before I even got back to my chair. He called in a steroid and told me to go to the ER if I didn't feel better in 5-6 hours. Within 4 hours my temp was up to 102 and I went to the ER. They did a CT scan, chest x-ray and a spinal puncture. I had pain and soreness down my spine and in my hips by the time we got to the spinal puncture. Although that was the best puncture I have ever had. Not only was it successful, but it relieved the pain and pressure in my head and spine. I had contracted bacterial meningitis post op. I was admitted to Isolation and kept from 9/2 through 9/11 at Duke University. I got home late Thursday night and have to do home IV antibiotics (central line) twice a day. I'm pretty well exhausted (husband also), but I am so thankful I have no spasms, my eye is fully open and I don't look like a stroke victim. I think we caught the meningitis before anything else neurological could be done.

Click here to see my "MVD Diary

Nancy Gevels
Former Memb.
Lippelo (Belgium)
Right
1998
Yes
No
Yes
1
04/08/04
Dr. Luc De Waele
Ghent, (Belgium)
Yes

Botox Comments: I had my first Botox in January 2003. I just had the 5th injection. One time I had a droopy eye.

Click here to see my "Personal HFS History".

Ruth Ghuman

Surrey, British Columbia (Canada)
Left
2005
Yes
Yes
No





Botox Comments: Not very successful, still have spasms, face looks lopsided and eye is extremely sensitive to light and tears in cold weather, which also causes spasms.
Marge Gibson

Millsboro, DE (USA)
Left
1980
Yes
No
Yes
1
05/20/96
Drs. Jannetta & Lovely
Pittsburgh, PA (USA)
Yes

Botox Comments: was in the original experimental study in the early eighties before approval from the FDA, They worked originaly but as time wore on they became less effective. Had seven shots about every three months in the beginning, later much more frequently.I received them for about twelve years.

MVD Comments - May 2003, seven years post-op and spasm free, thank God, and special thanks to Drs. Jannetta and Lovely. A brief recap: I was on Botox for about eleven years, they became less effective over the years. My spasms were the greater part of my life and I had very little respite from them. I came through the operation with no hearing loss. I did have Bells Palsy for about four weeks and a vocal weakness which was of short duration. To date I have no facial weakness or droopiness after being on Botox for so long.

Susan Gibson

Far Rockaway, NY (USA)
Left
2000
No

No






Julie Gilbert

Spokane, WA (USA)
Right
2006
No

No





Click here to see my "Personal HFS History".
Maresa Gilroy

Vernon, CT (USA)
Left
2004
No

No






Richard Gintz

Palatine, IL (USA)
Right
1998
No

No






Joe Giovannelli

Villa Park, IL (USA)
Right
2002
Yes
No
No





Botox Comments: good for a while. Concern on log term effect. Stopped for the past year.
Trixie Gisbert

Pasig City (Philippines)
Right
2007
No

No






Feben Gizaw

Glen Allen, VA (USA)
Left
2003
Yes
No
Yes
2
08/15/08
Dr. Amin Kassam
UPMC, Pittsburgh, PA (USA)
Yes

Botox Comments: Didn't help much.

MVD Comments: (MVD #1 on 08/13/08, also with Dr. Kassam, was stopped to prevent hearing nerve damage. Surgery was successfully completed on 08/15/08). I strongly recommend Dr. Amin Kassam and UPMC.

Mary Ann Glasco

Inverness, FL (USA)
Right
1998
Yes
No
Yes
1
10/12/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: 1st time was great - 2nd not as good - 3rd no relief at all.

MVD Comments: Update as of 06/28/08 – I have finally become “SPASM FREE”. It has been over 20 months since the surgery, but I have been spasm free for a couple weeks. I would get a spasm maybe every couple of days, but would only last for about 5 seconds. But for the last couple weeks, NONE. Everything I went through was worth the feeling I have now. Everyone is so happy for me & can't believe the difference in my face. People actually thought I had a stroke because of the way I looked. No more.! I just hope & pray that this will continue. If not, I would not hesitate to have it done again. It is worth it to me.

Gemma Gock

Sydney (Australia)
Left
1995
Yes
No
Yes
1
07/14/04
Prof. Marcus Stoodley
Randwick, Sydney (Australia)
Yes

Botox Comments: Works well for eye muscles but not so well for cheek and mouth. Was good when spasms were mild. Side effects can be minimised by low doses and injections close to eyelid margin.

MVD Comments - Had a high resolution MRI prior to surgery which identified the offending vessel, a loop of PICA. This was found to be squashing my facial nerve at surgery.

Rosie Goddard

Winchester (United Kingdom)
Right
2005
Yes
No
No





Botox Comments: Not at all effective. Botox gave me double vision which resulted in my loosing my job because of days off sick.
Omeshia Golatt

Miami, FL (USA)
Left
2000
Yes
No
No





Botox Comments: My first injections worked great once it kicked in, but didn't last the estimated 3 months. The last time I tried it in, October 2006, it didn't work. I was thinking of maybe trying a different doctor.
Lynne Gong

Sacramento, CA (USA)
Right
1991
Yes
Yes
Yes
2
06/09/09
Dr. Allen Efron
Redwood City, CA (USA)
No

Botox Comments: Botox works for me, but also causes weakness in my face.

MVD Comments: Update as of 07/24/09 - My doctor said my surgery was a difficult one. He spent a great deal of time to get the sponge out (the one from my first MVD which glued the artery and the facial nerve together now). He only did 90% clean up because my artery was bleeding. I lost my right side hearing after the surgery. My spasms are 80% less than before. My recovery was long and hard. I am ready to go back to work after 7 weeks recovery. (MVD #1 in 1995 with Dr. Zuo).

Weilong Gong

Philadelphia, PA (USA)
Right
2000
Yes
No
No





Botox Comments: Botox injection in Noverber 2001. It released partially the symptoms for 6 months, but my face became a little bit lopsided.
Fred Goodhue
Former Memb.
Spokane, WA (USA)
Left
1982
Yes
No
Yes
1
02/12/03
Dr. Robert Rostomily
Seattle, WA (USA)
Yes

Botox Comments: Inexact science, two different Drs., sometimes good result, sometimes drooping face & eye lid. Botox decreasing in effect with resulting long-term drooping of cheek.

MVD Comments: Update: 02/21/04 - It took six months for my spasm to totally subside and I have been spasm free for six months.

Ben Goody

Essex (United Kingdom)
Left
2004
No

No






Martha Gongle

St. Clair Shores, MI (USA)
Right

Yes
No
Yes
2
10/09/08
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

Botox Comments: Effective at first, increased dosage caused eye irritation, sinuitus, bronchitis and pain in ear. Little effect, spasms are worse now.

MVD Comments: Update as of 11/04/08 - I awoke with no spasms, no hearing loss and have suffered only the usual headaches and dizziness. I had a visual distortion with seeing things sideways right after surgery and it went away in a couple of days. Many thanks to all for giving me the courage to try again. It's wonderful to finally have control over my face. (MVD #1 on 02/08/06 with Dr. Daniel P. Elskens)

Lyndall Goodwin

Sydney (Australia)
Left
2009
Yes
Yes
No





Botox Comments: As of 01/20/10 - I had Botox in December 2009, worked great for three days, since then I have had various levels of spasms and droop & numbness on the whole left side of my face, including my neck at times. I have had one week that has been relatively 'normal'. The rest the spasms and numbness varies from mild to a twisted face. I am still deciding if I should continue with Botox for a second round and see if I have better results.
Deborah Gordon

Houston, TX (USA)
Left
2006
Yes
No
No





Botox Comments: Had 1 treatment of Botox. Not effective, but was given a low dosage. I will be trying it again
Rosalyn Grace

Hoover, AL (USA)
Right
2000
Yes
No
Yes
1
07/25/07
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA)
No

Botox Comments: Initially, the Botox seemed to work every other time. On occasion, it stopped the twitching altogether, but caused a droop in my face. After finding a doctor who specialized in movement disorders, she perfected the treatment and the Botox was very effective.

MVD Comments:

Karen Graham

Calgary, Alberta (Canada)
Right
1994
Yes
Yes
No





Botox Comments: Have had 3 injections of Botox, and experience significant relief - at least my eye doesn't close when I try to smile. Doubled the dose last time, which worked better. Does not provide a total relief, but certainly helps.
Quin Graham

Fountain Valley, CA (USA)
Right
2005
No

Yes
1
12/11/07
Dr. Christopher M. Duma
Newport Beach, CA (USA)
Yes

MVD Comments:
Clenson Grandcourt

Mauritius (Mautitus)
Left
2005
No

No






Laura Grant

Alexandria, VA (USA)
Left
2000
Yes
No
No





Botox Comments: I have a strong immune system so it didnt last more than 1 month.
Roberta Greathouse

Salinas, CA (USA)
Right
1997
No

No






Eric Green
Former Memb.
Copenhagen (Denmark)
Left
2002
Yes
No
Yes
1
11/25/03
Dr. Vagn Eskesen
Copenhagen, (Denmark)
Yes

Botox Comments: Felt inconvenient due to dry eye and kind of dead glance in eye.

MVD Comments: As of 12/04/03, Lost hearing in left ear, also have a slight paralysis on the left side of the face, can't close the left eye without closing both, and I can't show my teeth on the left side either. But the progress is good and probably these small problems will disappear as time goes.

Christie Greene

Springfield, MO (USA)
Left
2006
No

No






Rosemary Green

North Canton, OH (USA)
Both
2001
Yes
No
No





Botox Comments:
Olympia Gregory

Richmond, CA (USA)
Left
2004
Yes
No
Yes
1
12/07/07
Dr. Nickolas Barbaro
San Francisco, CA (USA) Pittsburgh, PA (USA)
No

Botox Comments: Botox treatments allowed me to continue working, but did disfigure my face. I had a wide open eye and an a-symmetrical smile. I couldn't lift the corner of the mouth on the side where I had had the injections.

MVD Comments: Update as of 12/09/08 – Was spasm free for 4 months following MVD before the spasms returned, although they are much less severe then prior to MVD. I use Lyrica, the side effects appear very minor...thought I don't know about long term use. I often go through full days without ever worrying about my HFS! I do wear slightly tinted glasses almost always when I am at work. However, I have felt so much less stress regarding my condition since I have had the MVD.

Jan Griese

Hamilton, Ontario (Canada)
Left
1989
Yes
No
Yes
1
02/06/07
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: I have had 26 botox injections. Becoming less effective and lasting for shorter periods.

MVD Comments: For details, click here to see my "MVD Diary.

Selina Griffin

Macon, GA (USA)
Right
2002
Yes
No
No





Botox Comments: 1st injection Nov 2008. Worked great the 1st time, then diminishing results each time after, with lip drooping after 3rd injection.

MVD Comments - Scheduled for MVD on 02/24/10 with Dr. Peter J. Jannetta, Allegheny General Hospital, Pittsburgh, PA (USA).

Barbara Grimm

Hamilton, Ontario (Canada)
Left
2002
Yes
Yes
No





Botox Comments: Receive Botox about every 16 to 21 weeks. Controls blepharospasm to a point.
Kristi Griffith

San Diego, CA (USA)
Right
1992
No

Yes
1
06/23/99
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Post MVD Conditions - None
Michele Grippa

Aliquippa, PA (USA)
Left
2006
Yes
No
No





Botox Comments: I still don't feel I am bad enough for Botox.
Julie Grower

Memphis, TN (USA)
Left
2009
No

No






James Guercio

Buffalo, NY (USA)
Right
1996
Yes
No
Yes
2
04/20/02
Dr. Kevin J. Gibbons
Buffalo, NY (USA)
No

Botox Comments: Botox injections very effective but uncomfortable.

MVD Comments: After the first MVD, on 04/17/02, Dr Gibbons said he noticed the twitching had moved lower on my face and that if it didn't improve he would have to go back in. After the first surgery I wasn't to bad, a little balance problem and tired. After the second surgery, on 04/20/02, I was out for the count. I couldn't even stand up without holding on to something. I was in the hospital for about 14 days and in rehabilitation for another 10 days. As of 12/14/03, unfortunately I am not spasm free and I did lose 82% of the hearing in my right ear because of the MVD. The fact that my Doctor did not use intra-operative monitoring during my surgery most likely had a roll in my hearing loss.

Margaret Guerra

Dallas, TX (USA)
Right
1999
Yes
No
Yes
1
12/13/07
Dr. Jonathan White
Dallas, TX (USA)
Yes

Botox Comments: Injections for the right eye worked for just a while. About 2 weeks after the first injections around the eyes. second dose effective for about 1 month now bottom of eye sags a bit more than the other.

MVD Comments: Update as of 12/24/07 – I ending up in the hospital for a total of 6days instead of 3 as expected. I am currently suffering with right-sided paralysis. Had to do lots of physical and occupational therapy before going home due to the vertigo. My hearing is still there "wooohooo''. I was told by my surgeon that once he was in the head, he saw that the blood vessel was "extremely" huge and he wondered how I had managed for so long with the HFS. I also had to have a weight put under my right eyelid as my eye is unable to close, blink or even cry. They had me on a lot of "eye" drops for excessive dryness and lubrication but my cornea ended up scratched anyway. NO MORE TWITCHING, PULLING AND STUTTERING. I am happy and "grateful", I am on the road to recovery and the surgery was very well worth it. The nerve needs to heal and it will. I’m fine and extremely grateful. Despite my outcome I would honestly say to not have the "spasms", I would probably do it again".

Jenn Gunning

Aurora, CO (USA)
Right
2007
No

Yes
1
11/30/09
Dr. Sean E. Markey
Parker, CO (USA)
No

MVD Comments: Update as of 11/30/09 - My surgery went very well. I am very woozy, so I can't say much yet. I still have some spasms, but they seem to be deminishing.
Amelia Gutierrez

East Palo Alto, CA (USA)
Left
2000
Yes
Yes
Yes
1
06/26/07
Dr. Allen Efron
Redwood City, CA (USA)
Yes

Botox Comments: I guess it helps, I get it every three months but never feel like the twitching ever stops. The second month is always the best. The side effects are that my face is deformed I can't smile because only one side of my face smiles and when I drive I can't really look over my left shoulder because my eye closes up. I hate needles and am very stressed when it is time for my Botox injections.

MVD Comments: Update as of 06/26/08 - I can't beleive it has been one year and I'm still spasm free. I am still recovering from the facial weakness but I can say that I am almost 100% recovered from the facial pralysis.

Christina Gutierrez

Long Beach, CA (USA)
Right
2003
No

No






Ernesto Gutierrez

Mexico City (Mexico)
Left
1999
Yes
No
Yes
1
04/04/063
Dr. Rogelio Revuelta
Mexico City (Mexico)
Yes

Botox Comments: It worked very well, the first 2 years (about six to eight months), then it goes down.

MVD Comments as of 04/15/06: Everythink is going very well with no pain, just some (vertigo, or nausea), that is dissapearing and some auditory problems.

Martin Gutierrez

Crandall, TX (USA)
Left
1999
Yes
No
Yes
1
06/02/03
Dr. Thomas Kopitnik
Dallas, TX (USA)
No

Botox Comments: Botox helps a little.

After going home I got an infection on the wound and had to go back for another three days. They had to reopen the wound and clean it out. The spasms are still with me, but not as severe. The doctor said it might take several months for the spasms to disappear. Also when I woke up from the M.V.D. my voice was weak. So on 08/19/03 I was sent to another doctor (head & neck Oncology) he stuck a camera up my nose and down my throat. What was found was my vocal cord (surgery side) was paralyzed.

Tashi Gyaltsen

London (United Kingdom)
Left
2006
Yes
No
Yes
1
02/03/09
Mr. Neil David Kitchen
London, England (United Kingdom)
No

Botox Comments: Botox injection OK but wears off in 2 months - never truly stopped the spasm even within 2 weeks of injection.

MVD Comments: Update as of 02/04/09 - Had MVD done yesterday. Spasm still occurring. Very concerned. Researched and found that it's very common to have spasm after the operation. Milestone to look for slow disappearance of Spasm:- 1 wk (still spasm but little less), 6 wks(almost 80% gone), 3 months (over 95% gone and 6 months (should be completely free of spasm).

Gilbert Gyarmati

Coldwater, MI (USA)
Right
2001
No

No








Starkville, MS (USA)
Both
1979
No

No






Scott Haas

Florissant, MO (USA)
Right
1988
No

No






Tayeb Habib

Ramada - Odivelas (Portugal)
Left
2000
Yes
No
Yes
1
07/03/02
Dr. Cunha e Sa
Lisbon, Portugal
Yes

Botox Comments: left face gradually paralyzed.

MVD Comments: No more spasms since I had MVD by Dr Cunha e Sa from Portugal.

Paula Hadley

Barryton, MI (USA)
Left
1978
Yes
No
Yes
1
08/12/02
Dr. Oren Sagher
Ann Arbor, Michigan (USA)
Yes

Botox Comments: Worked well for a while, then injections became more frequent and more of them to get same effect.

MVD Comments: As of 12/14/03, some balance probelms, not severe, but enough to bother some of my activities. And my head is numb as a result of the incision and stitches. This is approx. 16 months following surgery. My sense of smell is a not accurate.

Robert Halenda

Westcliffe, CO (USA)
Left
2008
No

No






Phyllis Hall

Logan, UT (USA)
Left
1996
No

No






Roy Hall

Gore, OK (USA)
Right
2001
Yes
No
No





Botox Comments: relief for about 3 months
Alasdair Hamilton

Glasgow (United Kingdom)
Left
2002
No

No






Steve Hammersmith
Inactive Memb.
Dallas, TX (USA)
Right
2005
Yes
No
Yes
1
08/22/07
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Became less effective and required more frequent treatments.

MVD Comments: Update as of 09/25/07 - some loss of hearing on affected side, vertigo with nausea, tinnitus in right ear, "plugged up" ear, mild headaches.

Jackie Hampton

Angus, Scotland (United Kingdom)
Left
2001
No

No






Alex Handyside

Halifax, Nova Scotia (Canada)
Right
1990
Yes
No
Yes
1
03/08/04
Dr. Robert Brownstone
Halifax, Nova Scotia (Canada)
Yes

Botox Comments: Found out about Botox in 199, but couldn't get a Doctor to refer me until 1996. Initially lasted 4.5 months, but within two years it was only lasting two months. Gave up Botox in 2003 when it lasted just two weeks. Surgery became the only option.

MVD Comments: For details, click here to see my "MVD Diary".

Anthony Hannon

North Haven, CT (USA)
Left
2009
No

No






Shabeeba Hannan
Inactive Memb.
Barrow-in-Furness (United Kingdom)
Right
2004
Yes
No
Yes
1
02/03/04
Prof Hugh Coakham
Bristol, England (United Kingdom)
Yes

Botox Comments: Very effective initially. Mild facial palsy, wore off in 3 months.

Click here to see my "Personal HFS History".

MVD Comments: Mild hearing loss, no other complications. I think MVD is the best thing that has happened to me! I am completely spasm free and back to leading a normal life after 10 agonizing years. Thank you Prof Coakham.
Erica Hansen

La Crosse, WI (USA)
Left
2004
Yes
No
Yes
1
09/03/09
Dr. Jerry Davis
La Crosse, WI (USA)
Yes

Botox Comments: Very painful during injection. It did not work and left me with a slight droop of my eyelid and mouth.

MVD Comments: Update as of 09/20/09 - I've been dreaming of being able to make this post! I am spasm free!! It feels wonderful! I do have some side effects from the surgery but my doctor is very confidant that they will all resolve in time. I have dizzieness and I'm still pretty wobley on my feet and can't spin around too quickly or I get that sick feeling. Also, have some hearing loss.

Jeanette Hansen

Portland, OR (USA)
Right
2003
No

Yes
2
11/02/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: Update as of 11/15/08 - Well, here goes the words I wasn't sure I would ever get to say. I AM HAPPY TO ANNOUNCE THAT I HAVE BEEN SPASM FREE since about 10 months after my 2nd surgery. I still can see a vein pulsate under my eye periodically and every great once in a while I have what I will call just a very mild flutter/tension in my lower eyelid, not bothersome at all, not noticeable, and less and less as time goes on. This is so unnoticeable that I now look completely normal. I’m ecstatically happy since this went away. I did lose the majority of the hearing in the right ear/MVD side. I went to a hearing aid center recently, but at this point a hearing aid won't help. I still have more hearing in the MVD side than I thought I did, so there may be some hope in the future with advancing technology. Even with the hearing loss and what I will describe as a very difficult 2nd surgery, I absolutely, 100%, would do this again, knowing everything I know now. I am not happy that I lost the hearing but I am by far happier being spasm free. (MVD #1 on 03/09/06 also with Dr. Jannetta)
Dorthy Hardin
Former Memb.
Raleigh, NC (USA)
Right
1988
No

Yes
1
08/18/99
Dr. David L. Kelly
Winston-Salem, NC (USA)
Yes

Post MVD Conditions - Total hearing loss HFS ear, Mouth movements like eating and smiling make right eyelid muscles contract.
Carol Hardy

Raleigh, NC (USA)
Right
1992
Yes
Yes
No
2
04/14/03
Dr.Takanori Fukushima
Raleigh, NC (USA)
Yes

MVD Comments: MVD #2 took 2 1/2 hours. Dr. Fukushima said the 7th and 8th nerves are supposed to work in sequence but mine did not, and they were wrapped together. He separated them above where the previous surgery was. He would have tried to separate them further down the nerves but I would have had complete loss of hearing in my right ear, facial palsy and dizziness. So he did the best he could with what he had to work with. He also said he did not want to put me through another surgery, so if this doesn't work, he would suggest Botox injections every 3 months He found two other loops with my artery and nerves. But the good news is I AM NOT HAVING SPASMS!!!!!!!! During the first night, my hearing went deaf twice, but nothing since.

1st MVD on 05/24/93 with Dr. Charles Rawlings, Forsyth Hospital, Winston Salem, NC (USA) and was spasm free for nine years until 2002.

Sylvia Harmon

San Antonio, TX (USA)
Left
1999
Yes
No
Yes
1
03/10/03
Dr. Rob Parrish
Houston, TX (USA)
Yes

Botox Comments: Update as of 04/23/08 - Eye would not close, mouth drooped. I saw a Dr. Davis in New Braunfels, TX and had Botox again a few months after my MVD. He did an excellent job and after a few weeks the spasms stopped. It was five years in March since my MVD and I have been spasm free since the last botox injection a few months later. I have had breast cancer surgery, two cataract surgeries and a hand operation last year, but have recovered from all of them. I just had my 72nd birthday last Sunday and went dancing to celebrate. Life is good and I owe much of it to HFSA for all the support I received in 2003.

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary".

Kay Harper

Camberley, (United Kingdom)
Right

Yes
No
Yes
1
07/27/04
Prof. Hugh Coakham
Bristol (England)
No

MVD Comments: Update as of 07/27/08 – After being spasm free for 3 years following my MVD, the spasms returned in 2007. I am taking meds at moment and they help a little. Not ready to make the decision for 2nd as yet.
Judy Harrell

Midlothian, VA (USA)
Both
1987
No

No






Cynthia Harris
Former Memb.
Ft. Worth, TX (USA)
Right
2001
No

Yes
1
12/03/02
Drs. Kassam & Horowitz
Pittsburgh, PA (USA)
No

MVD Comments: As of 10/06/03, there has been some improvement since my 2nd MVD operation, but I still have flutters when I eat and when I say words starting with M's. I just keep hoping it will eventually all go away, but I can live with it at this state. I would say I had a 60% improvement.

MVD #1 also with Drs. Kassam & Horowitz, UPMC, Pittsburgh, PA (USA) on 11/14/02.

Sara Hartman

Jefferson City, MO (USA)
Left
2002
Yes
No
Yes
1
06/02/08
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: Update as of 06/06/08 - Phil and I went to see Dr. Casey early this morning for my post-op appointment. Though I am still quite weak and tired, I am amazed at the improvement since Monday when I woke up from surgery and spent the next 24 hours dry-heaving. Now if I can stop sleeping during the day to be able to sleep during the night I will be doing much better. Although it sounds like I am hearing with both ears, it was evident today that my hearing is currently significantly less on the left side. At six weeks I will have an audiogram to assess how everything is working, but even if things continue as they are now, it seems livable. Dr. Casey sees some small signs of improvement to my face, but says he just has a bad feeling about the nerve. It may be that I will recover fully, but if not, there is a nerve grafting procedure called facial reanimation that can be done, either back here with Dr. Casey or at the University of Missouri closer to home. So there is much room for hope. The good news is that the spasms have stopped. Keep praying for improvement, please, that the palsy is facial nerve weakness rather than damage.

For details, click here to see my "MVD Diary".

Nicola Harvey

Berkhamsted (United Kingdom)
Right
2006
No

No






Jane Haverkorn

Savage, MN (USA)
Left
1995
Yes
Yes
No





Botox Comments: Way better than spasms. But injections hurt and sometimes get too much and results are droop.
Pat Hawley

Bellingham, WA (USA)
Right
2006
No

No






Susan Hawley

Wayne, MI (USA)
Right
1998
No

No






Donovan Head
Former Memb.
Ogden, UT (USA)
Left
1998
Yes
No
Yes
1
06/02/04
Dr. Mark V. Reichman
Salt Lake City, UT (USA)
Yes

Botox Comments: Tried twice, no result and extremely painfull.

MVD Comments as of 06/18/04: 7th and 8th cranial nerves were overlapped and required separation resulting in a 65% hearing loss on left side. I am already deaf on right side due to mastoidectomy in 1973. Hearing aids are now required. Headaches, nausea and dizziness. I am worried that I will lose my job due to hearing loss. Trouble sleeping at night.
Cindie Heavner

Jensen Beach, FL (USA)
Left
2008
No

No





MVD Comments: Scheduled for MVD consultation on 01/20/10 with Dr. Siviero Agazzi, Tampa General Hospital, Tampa, FL (USA).
Dana Helder

Fort Frances, Ontario (Canada)
Left
1998
No

Yes
1
04/17/07
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Click here to see my "Personal HFS History". MVD Comments: Update as of 07/02/07 - I have been spasm free now for 3 weeks. Prior to the 3 weeks I was spasm free for almost 2 weeks and then had 2 days where I had a few mild spasms. So all in all I have had only 2 days within the last 5 weeks.
Deb Hegler

Forest Lake, MN (USA)
Left
2006
Yes
No
Yes
1
02/12/07
Dr. Stephen J. Haines
Minneapolis, MN (USA)
Yes

Botox Comments: Controls about 90% of the twitching, but now when I smile - the left side of my face is immobile.

MVD Comments: Update as of 02/28/07 - I had a very successful MVD surgery. I am spasm free and Dr. Stephen Haines from the U of Minnesota Hospital is excellent, as well as the whole team working with him and at the U of M. I am still suffering some bad headaches, but other than that, doing Great!!!

Janice Helton

Silver Creek, NY (USA)
Right
2004
No

No






John Hemmann
Former Memb.
Laguna Hills, CA (USA)
Left
1999
No

Yes
1
09/30/02
Dr. Hrayr Shahinian
Los Angeles, CA (USA)
Yes

MVD Comments - As of 12/02/2002, The condition causing the hemifacial spasms turned out to be more severe than originally anticipated. Dr. Shanian explained that it was a "type four" severity with regard to the wrapping of the blood vessels around the facial nerve. To make a long story short, the operation cured the facial spasms, but I was left with the left side of my face paralyzed and totally without hearing in my left ear. I also had to have cosmetic eye surgery on my lower left eyelid, as the eye could not be fully closed and was having problems with infection. My facial functions have been slowly returning and it is expected that these will be back to normal (at the current rate, maybe in 4-6 months?). However, my hearing has not returned at all. I do not regret having the operation and am thankful that the spasms are gone, but never dreamed that I would suffer the severe "side effects". The fully endoscopic surgery resulted in a relatively small skull opening and the original bone was set back in place. This healed rapidly with a minimum of complications.
Ruth Hemphill

Ozark, MO (USA)
Right
1999
Yes
No
Yes
1
06/02/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: Botox isn't always effective and closes my eye for several weeks after injections. Droopy eyelids a problem. Numerous times the Botox appeared not to work - perhaps the dose was too low. Some injections were successful and others were not.

MVD Comments:
Donna Henderson

Atlanta , GA (USA)
Left
1999
No

No






Julia Henderson

Whakatane (New Zealand)
Right
2009
No

No








Brookings, SD (USA)
Left
1995
Yes
Yes
No





Botox Comments: Very effective, arrests the spasm, gives me a break. It does appear as if I've had a stroke, people do ask if I have. But I'll gladly trade it to stop the spasm.
Ed Hendrickx

Denver, CO (USA)
Right
2006
No

No






Joanna Henning

Golden Valley, MN (USA)
Left
2005
Yes
No
Yes
1
12/13/06
Dr. Amin Kassam
Pittsburgh, PA (USA).
No

Botox Comments: I have stopped using Botox, and am waiting a few months before trying MVD.

MVD Comments:

Randall Henry

Lebanon, TN (USA)
Left
1998
No

Yes
1
10/26/99
Dr. Carl M. Hampf
Nashville, TN (USA)
Yes

MVD Comments: Update as of 07/12/08 - Developed some numbness along and around the scare. Also I will have a pin prick sensation from time to time at the top of the opening in my skull. It had been almost nine years post MVD and I still am "spasm free". MVD is certainly worth whatever recovery time it takes to be spasm free.
Deborah Herdlicka

Cedar Rapids, IA (USA)
Left
2001
Yes
No
Yes
1
09/17/09
Dr. Bruce Gantz
Iowa City, IA (USA)
No

Botox Comments: Botox helped with spasms, but it froze my face,face drooped,and I couldn't smile or even open my mouth on left side.

MVD Comments: Spasms continue with same regularity if not worse.

Susan Herring

Picayune, MS (USA)
Left
2004
No

Yes
1
02/15/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: Update as of 02/17/07 - Have some weakness on the left side, lopsided smile, etc. I have lost my hearing completely in my left side also. They are at a loss as to why this happened, as they monitored the 8th nerve, and everything went fine, or so it seemed. I had told them about the stuffiness that happened on the plane, so they are thinking maybe I have an infection, or fluid build up. I go back for another hearing test on 02/20/07. I thought I was prepared for this (the possible hearing loss) but I cry every so often, when I think about it. I am blessed though, to be "spasm free", and I'm very grateful for that.
Kay Hershberger

Orlando, FL (USA)
Left
2001
No

No






Stuart Hicken
Inactive Memb.
Basingstoke (United Kingdom)
Left
2000
Yes
Yes
Yes
2
06/01/07
Mr. Owen Sparrow
Southampton, England (United Kingdom)
Yes

Botox Comments: Been having Botox for 7 years. Has some help but causes its own problems with drooping eye lids, lack of control in corner of mouth, recurring eye infections as the eye doesn't close properly.

MVD Comments: Update as of 12/14/07 - First MVD had no effect, MR scan revealed another section that appeared to be compressing nerve so underwent further surgery on different part of nerve. After MVD #2, it took until October 2007 until I became spasm free and life is wonderful!! It took a while to fade away but I'm now confident that the spasms have stopped.

Leatrice Hicks

Wilmington, NC (USA)
Right
1996
Yes
No
No





Botox Comments: The first time I had botox injections was in 1998. After about 2-3 weeks, I could see an improvement in the spasms. The effects of the botox lasted about 5-6 months. In 1999, I got botox injections on two (2) ocassions. In 2000, I had botox injections on two ocassions. The last time I received botox was in 2001. By this time, the botox was not controlling the spasms like it did when I first got them in 1998. I decided not to get anymore injections because they were no longer effective and because I just couldn't stand to get the needles in my face any longer. I had a bad reaction to botox only once. That was one time in 1999. Immediately after the injections, I experienced light headiness. The right nostril stopped up. I had very rapid eye movement. The right ear, temple, and eye socket hurt.
Jim Hiddle

Altus, OK (USA)
Right
2004
Yes
No
No





Botox Comments: Effective for about one month after injection. Has caused right side of face to tighten and appears different from left side now. Insurance only covered treatments every six months. Last treatment caused bruising around the right eye.
Kelsey Hildal

Cincinnati, OH (USA)
Left
2000
Yes
No
Yes
1
03/21/02
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: first Botox treatment administered June 2001; too much at the mouth which created a look and feel of paralysis; good result on the eye area; scheduled for next treatment 10/6/01.

Post MVD Comments - The first few days in the hospital are pretty bad I have to admit. But every second you are starting to feel better. I feel it was totally worth it. Now I am back doing the things I normally have been doing.

Click here to see my "Personal HFS History".

Sue Hill

Blue Ridge, TX (USA)
Right
1977
Yes
No
Yes
1
08/31/07
Dr. Richard H. Jackson
Dallas, TX (USA)
No

Botox Comments: I hate Botox. After injections, I sometimes could not see for up to 6 weeks, vision blurred. Also my face would look like I had a stroke. This would last up to 3 months.

MVD Comments: Update as of 09/09/07 – Not yet spasm free, but it seems to be getting better. Dr. Jackson found 2 very large vessels, one on my facial nerve and one on my hearing nerve. After 30 years of HFS, of course some damage. He says he hopes it will heal and I become spasm free. Seems my hearing nerve was worse than my facial nerve, probably why I have Tinnitus. Still a little loopy, but regaining strength every day.

Tammy Hill

Mount Airy, NC (USA)
Left
2007
No

No






Paula Hiltz

Halifax, Nova Scotia (Canada)
Right
2003
Yes
No
Yes
1
11/15/06
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: Botox treatments - approximately three then my mouth started to droop. Stopped treatments. Felt I could live with the twitch. Symptoms eventually went away. I thought I was cured. The spasm are now back and indeed they are spasms. Very noticable when active. I'm scheduled for more Botox treatments

MVD Comments: For details, click here to see my "MVD Diary.

Sylvia Hines

Selma, NC (USA)
Left
1999
No

No






Mary Hirsch

Minneapolis, MN (USA)
Left
1996
No

Yes
1
09/05/01
Dr. Michael Link
Rochester, MN (USA)
Yes

Post MVD Conditions - At three months post-op hearing still diminished. I really can't complain about the hearing, although it is bothersome at times because voices on that side seem muffled. If it never improves from where it is I'll be fine.
William Hitchcock

Boyertown, PA (USA)
Right
2000
Yes
No
Yes
1
07/23/07
Dr. Eric Zager
Philadelphia, PA (USA)
Yes

Botox Comments: After third injection, I experienced eye drooping and decided to stop injections.

MVD Comments:
Brenda Hix

Mission Viejo, CA (USA)
Right
2001
Yes
No
Yes
1
02/16/04
Dr. Hrayr K. Shahinian
Los Angeles, CA (USA)
Yes

Click here to see my "Personal HFS History".

MVD Comments: (As of 02/22/04) Dr. Shahinian said I was in the 2% of the worst cases he had ever seen. I had 2 vessels wrapped around the 5th and 8th nerve, so I lost 80% of my hearing, causing my balance to be off, and I have to use a walker for a few weeks, he said until the swelling goes down Also I have double vision, difficult to see, cannot taste, the right side of my face is drooping and I have no feeling on that side yet so it's difficult to eat or drink.

Stephen Hoag
Former Memb.
Muskegon, MI (USA)
Right
1995
Yes
No
Yes
1
08/01/97
Dr. Ghaus Malik
Detroit, MI (USA)
No

Botox Comments: I would not recomend botox although it has helped some according to my DRs. it was not effective on me I did not like the droopyness on the right side.

MVD Comments: I have some pain even now at entry site Pain follows the scar very sharp pain prelude to a spasm other than that I'm fine. I suggest any one thinking about mvd to go ahead I fell in about the 7% that failed but others have had great outcomes. If I had it to do over not knowing what I know now I still go for it.
Alison Hoang

Guelph, Ontario (Canada)
Left
2003
Yes
No
Yes
2
09/15/09
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
No

Botox Comments: Good at the first couple of years, but look puffy after injection.

MVD Comments: (MVD #1 on 11/03/08 with Dr. Michael Tymianski).

Lennie Hockman
Former Memb.
Atlanta, GA (USA)
Left

No

Yes
1
08/01/98
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

MVD Comments - I highly recommend Dr. Kassam and University of Pittsburgh Center for Cranial Nerve Disorders and Microvascular Surgery. I have the Federal Blue Cross/Blue Shield PPO and they paid very well. I am a happy camper.
Kathy Hobson

Seattle, WA (USA)
Left
2005
No

No






Dana Hoffman

Marble, MN (USA)
Right
1988
Yes
No
No





Botox Comments - Botox did wonderful on "all" my illnesses (because they are related), for 4 months and then needed to have more injections that I could not afford. When I moved it was hard to find a doctor who would do it.
Joe Holdredge

North Canton, OH (USA)
Left
2000
Yes
No
No






Thom Holland
Inactive Memb.
San Diego, CA (USA)
Right
1992
Yes
No
Yes
1
05/15/01
Dr. Thomas Waltz
La Jolla, CA (USA)
No

Botox Comments: Injections were slightly painful & helped stop the twitches but were only temporary.

MVD Comments: My problem was different than most. I did not have a vein leaning against a nerve, but an artery piercing a nerve bundle. Because of the nature of the of my problem, the surgery caused me to loose hearing in the MVD ear and for two weeks, almost total loss of balance.
Barbara Homsey-Holliday

Melbourne, FL (USA)
Left
2001
No

Yes
1
08/30/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: Update as as of 03/11/09 - For all those disappointed folks out there - be of good faith! As of the past several weeks my spasms have stopped almost entirely! It took me a good 18 months for the spasms to stop. So nice to lie down at night and not feel those constant spasms.
Jan Holmquist

Helena, MT (USA)
Right
1998
No

No






Nancy Holsberger

Niskayuna, NY (USA)
Right
1996
Yes
No
Yes
1
04/07/08
Dr. Thomas Lovely
Albany, NY (USA)
Yes

Botox Comments: I first recieved my Botox injection from my eye doctor however, he was never consistent and sometimes my eye drooped or my smile disappeared until the results wore off. Now I am receiving treatments from a rehabilitative Medicine specialist that uses a machine to determine where the spasms are occuring prior to the injections. However, even this can have unpredictable results at times.

MVD Comments: Update as of 04/15/08 - Everything went well and I was totally spasm free from the minute I woke up. I have a million bruises but no real pain except at the incision site. I'm struggling to stay inactive but know it will be best to do that! I can't thank Dr. Lovely enough, nor the ICU staff at the hospital - they were all terrific.

Julie Holzhauer

North Ridgeville, OH (USA)
Left
2006
No

Yes
1
04/05/07
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

MVD Comments: Update as of 10/08/2009 - I have been spasm free for about 11 months now. Still have the sensation of my face wanting to have one but i dont. YAY!!
Barbara Homsey-Holliday

Melbourne, FL (USA)
Left
2001
No

Yes
1
08/30/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

MVD Comments: Update as as of 09/24/07 - I'm now 3 weeks post-op - very little discomfort in surgical area - no hearing problems & so far no palsy problems. Still have some spasms though not nearly as often as before. My husband says he does not notice them at all. So nice to lie down at night and not feel those constant spasms.
Lin Hooper

Madison, TN (USA)
Right
1997
Yes
No
No





Botox Comments - I had botox 4 times a year. we had to increase the dose as we went along. At times it would help 90% sometimes 60%. The shots would make me slightly nauseus and sleepy and light headed. Whether it was the botox or the spasms, My smile was effected. when I smiled only one side of my mouth would raise into a smile.
Linda Horochena

Kenosha, WI (USA)
Right
1996
No

No






Ruth Hoschar

Beaver Falls, PA (USA)
Right

Yes
Yes
No





Botox Comments:
Doris House

Loma Linda, MO (USA)
Right
2008
No

No






Gloria Hudson

Murrysville, PA (USA)
Left
2000
Yes
No
Yes
1
06/23/05
Dr. Kenneth F. Casey
Pittsburgh, PA (USA)
No

Botox Comments: Worked temporarily for 2 years then froze my face into a pull.
Gayle Huffman

Coquitlam, British Columbia (Canada)
Right
2005
No

Yes
1
04/07/08
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes
MVD Comments: Update as of 04/12/08 - Awoke in recovery minimal pain and NO spasms!! Released from the hospital the next afternoon (Tuesday) and on Wednesday morning, checked in with Dr. Kaufmann's office then flew home that afternoon. I haven't had to take any pain medication since leaving the recovery room and feel incredibly well! I'm finding it extremely hard to NOT do things around the house and just sit and rest. I will admit to tiring more easily, but other than that I feel great. So far the spasms haven't returned, although yesterday I had a few little flutters on my top lip. On Thursday I woke up with that muffled feeling in my ear, but that's normal I guess and hopefully it will go away. I hope that one day I can offer the kind of support I've received to someone else.
Karen Huffman

Cabin Creek, WV (USA)
Left
1987
Yes
No
Yes
2
11/06/06
Dr. Takanori Fukushima
Raleigh, NC (USA)
No

Botox Comments: Worked for 3 years then not effective.

MVD Comments: Update as of 04/18/07 - I had the 7th and 8th nerves entangled in a vessel at a lower portion of the brain. I was taken back to the hospital on 11/09/06 and had the surgery site reopened and cleaned out due to an infection. I awoke with a palsy effect on the entire side of my face. I am still in the frozen state, although I believe it is getting better. Three months after the surgery I had a stitch placed in the outer eye lids to help in the closing of the eye. I still have trouble chewing and have to drink from a straw. I am happier with the palsy than I was with the spasms, at least now I have constant vision. I laugh saying, my face moved all the time so I had brain surgery and my face doesn't move at all now. (MVD #1 also on 04/18/06 also with Dr. Fukushima).

Greg Hugh

Kirkland, WA (USA)
Left
1998
Yes
No
Yes
3
02/11/08
Drs. Peter J. Jannetta and Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: It is increasingly ineffective.

MVD Comments: (MVD #2 with Drs. Peter J. Jannetta and Ray Sekula on 02/06/08, MVD # 1 with Dr. Laligam N. Sekhar on 05/22/07).

Katherine Hughes

Waukegan, IL (USA)
Right
1998
No

Yes
2
07/14/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: For details, click here to see my "MVD Diary. (MVD #1 with Dr. Gail Rosseau, Chicago, IL (USA))
Shannon Hunsecker

Shippensburg, PA (USA)
Right
2005
Yes
No
No





Botox Comments - I received 3-4 injections and the first one worked for quite a few months and I had no spasms but the rest had no effect on my spasms.
Karen Hunt

Hull, England (United Kingdom)
Left
1996
Yes
Yes
Yes
1
04/15/04
Mr. Kevin Morris
East Yorkshire, (England)
No

Botox Comments: Very little effect, no side effect.

MVD Comments:

Lucile Hurley

Fruitland Park, FL (USA)
Right
1995
No

Yes
2
08/14/08
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

MVD Comments: Update as of 01/20/09 - With MVD #2 I have lost approximately 20% of the hearing in my right ear but am pleased to report that I’m spasm free. (MVD #1 on 08/21/03 with Dr. Kenneth F. Casey - was spasm free for 3 years following MVD #1).
Jane Hurst
Former Memb.
Meridian, MS (USA)
Right
1991
Yes
No
Yes
1
10/29/03
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Took Botox injections for years, even back to experimental days. The lst few years have lost effectiveness.
Cathy Husler

Mifflintown, PA (USA)
Right
2002
Yes
No
Yes
1
10/24/02
Drs. Kassam & Horowitz
Pittsburgh, PA (USA)
Yes

Botox Comments: One series of injection, only lasted 4 days then the spasms came back with a vengence.

MVD Comments: The morning after my surgery, I am told that I had what they believed was a blood clot. My husband was told that in order to save my life, I had to have emergency surgery to relieve the intra-cranial pressure that developed during the night. At around 8:00 am he was compelled to sign permission to do so. I spent the next 19 days in the 4F ICU at UPMC. While there I suffered a blood clot to each lung, nearly dying again. Then was moved to a step down unit on the 12th floor. I was there 2 days, then moved to the 8th floor, where I spent 8 days. It was at that point they believed me well enough to be transferred to Squirrel Hill Rehabilitation. I was only there 3 days and did nothing but throw up and developed a nasal bleed. I was sent back to UPMC Montifiore for an additional 14 days. An Internal Medicine doctor worked with me at this hospital. In all I spent 43 days in the hospital system. During this time I was not able or allowed to eat anything by mouth, because of a swallowing problem. Then 18 days at Nittany Valley Rehab. I still have quite a bit of trouble with balance and appetite, losing over 50 pound because of a long bout with nausea. I 'ver been told many times that I should feel better in a year, but that year seem to get further and further away. I just want to feel good again. This has been so difficult for me and my entire family. I just want to feel good again.

Pam Hutchason

Largo, FL (USA)
Left
1991
Yes
Yes
Yes
1
03/14/07
Dr. Harry R. Van Loveren
Tampa, FL (USA)
No

Botox Comments: Botox does help.

MVD Comments: Surgery did not help and deciding on 2nd surgery.

Dee Hyneman

Milwaukie, OR (USA)
Left
1996
No

No






Belen Iammartino

Staten Island, NY (USA)
Right
2004
No

No






Merlisa Ibasco (Rico)

Quezon City (Philippines)
Left
2004
Yes
Yes
No





Botox Comments: Visited the doctor and prescribed Botox injections Scheduled for Botox injections on 08/03/07.
Rennette Isaac

Jacksonville, FL (USA)
Left
1998
Yes
No
Yes
1
11/18/03
Dr. Albert Rhoton, Jr.
Gainesville, FL (USA)
No

Botox Comments: Botox stops the twitching but the side effects made my eye stayed closed for the whole 3 to 4 months also my mouth would drool. My last injection was November, 2002. I have an appointment to see the doctor on August 15, 2003 and he will probably want to do the Botox again but I don't want it. MVD Comments:
Mary Ison

Cabot, AR (USA)
Right
2000
Yes
No
Yes
1
06/05/08
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Did not work

MVD Comments: .

Wendy Ito

Torrance, CA (USA)
Right
2004
No

No






Paul Ivey

Cumming, GA (USA)
Left
1998
Yes
No
No





Botox Comments - Botox was effective. My employer's new health insurance company will not pay for Botox.
Milded Ivory

Stockbridge, GA (USA)
Right

No

No






Carole Jackson

Essex (United Kingdom)
Left

Yes
No
Yes
1
03/13/08
Prof. Hugh Coakham
Bristol, England (United Kingdom)
No

Botox Comments: One small dose of Botox, helped 95% for three months and symtoms restarted. Doctor said he would increase the next dose if not sufficient. no side effects. I am apprhensive (but not objectionabe) to the use of Botox.

MVD Comments: Update as of 04/03/08 – I’m 23 days post op and improving all the time. Having woken each morning with a headache for the first 7/10 days, these are now subsiding and intermittent and I’m optimistic they will fully subside. I have taken 2 x 500 mg Parecetamol at night to ease pain. Once up in the morning the headache goes away. I would add that my head on the left op side is sore to the touch (no swelling), but I suppose this is only to be expected. My scar has faded and hardly noticeable. I have not experienced any nausea. To date I class my MVD as successful with only an occasional flutter around the eye, with no more eye droop or pulling in the face. There is a slight loss of sensitivity on that side of the face, but I am sure this to will subside with time. Very important I have rested and taken things very easy. Professor Coakham, was a complete gentleman with a caring and excellent bedside manner. He gave me complete confidence and looked in on me every day whilst in hospital being 5 nights to inquire how I was feeling and to make sure I was comfortable. He moved and padded the seventh cranial nerve incorporating lateral spread response.

Oleta Jackson

Durant, OK (USA)
Right
1996
Yes
No
Yes
2
07/18/06
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

MVD Comments: (MVD #1 with Dr. Robert Grossman on 06/10/04)

Paula Jackson

Hamilton, Ontario (Canada)
Left
1989
No

Yes
1
10/26/04
Dr. Anthony Kaufmann
Winnipeg (Canada)
Yes

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary".

Sherry Jackson

Winder, GA (USA)
Right
1989
Yes
No
Yes
1
08/24/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Using Botox about 5 yrs. not as effective as it used to be-don't like the stroke look but my neuro works well with me to tweak it every 3 months.

MVD Comments: Update as of 08/27/07 - Oh, what a great “SPASM FREE” year it has been! I had forgotten what it felt like to smile with both sides of my mouth. I do still find myself forgetting that I don't have to sit with my back to the crowd in a restaurant and I don't have to run from meeting someone face to face. I have no lasting affects from my surgery. I made my decision to have surgery after reading everything and I mean everything on this website as well as the DVD’s. I went into brain surgery with a peace that I had done all I could do and then just put it all in God's hands. I hope those still searching will find encouragement here for whatever course of treatment you decide. It's truly a miracle to me!!!!

Sue Jackson

Cranswick, East Yorkshire, England (United Kingdom)
Left
1991
Yes
No
Yes
2
11/27/07
Prof Hugh Coakham
Bristol, England (United Kingdom)
Yes

Botox Comments: No effect whatsoever.

MVD Comments: Update as of 11/29/09 - I had my first MVD in May 2005 with a NHS surgeon at my local hospital in Hull, Yorkshire which was completely unsuccessful. In November 2007, I had my MVD #2 with Prof. Coakham. I was not spasm free immediately but over the last 22 months the spasms have gradually decreased and I only have mild ones for a few seconds once or twice a week now. After nearly 15 years of having spasms - the last two months have been a joy and hard to believe - I very occasionally get a slight muscle pulling in my face but NO SPASMS. Its been a very long haul and I still can't quite believe they have gone for good. (MVD #1 with Mr. Kevin Morris on 05/16/05).

Karen Jacobs

Lansing, MI (USA)
Right
2002
No

Yes
1
11/29/06
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

MVD Comments: Update as of 12/16/06: I am still dealing with some recovering issues concerning my face muscles, eye, and hearing but the main focus is “NO SPASMS” since surgery. Dr. Casey said these are all within the "recovery" cycle and to be patient. HFS takes time to develop its ugly face and it will take time to see the fully recovered face. How wonderful not to spasm all day long.
Frieda Jaffe

Boca Raton, FL (USA)
Left
1992
No

Yes
1
08/19/96
Dr. Albert Rhoton
Gainesville, FL (USA)
Yes

Post MVD Conditions - None
Shah Jahan

British Columbia, (Bangladesh)
Left
1995
No

No






Louise James

Gatineau, Quebec (Canada)
Left
2006
Yes
No
Yes
1
11/24/09
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: Unfortunately takes a couple of weeks to kick in and doesn't last very long. Doctor won't give injection more than 1x per 3 mos. MVD Comments: Update as of 12/30/09 - All went well with surgery. Dr. Kaufmann thought there were only two offending vessels, but he found a third one lying underneath the really large one. I woke up with my hearing intact and spasm free, however, he did warn me that the spasms might come back.
Andy Jamison

Los Angeles, CA (USA)
Left
2001
Yes
No
Yes
1
03/23/05
Dr. Kim Burchiel
Portland, OR (USA)
Yes

Botox Comments: The neurologist put way too much in. At first I was constantly biting the inside of my mouth. Drooling. Couldn't smile. The spasms did decrease noticebly for about 4 months, however, I honestly didnt know what was worse, the spasms, or the drool!

MVD Comments: For details, click here to see my "MVD Diary".

Kent Janes

San Antonio, TX (USA)
Left
2003
Yes

No




Botox Comments: Worked well for almost 9 months, but first three month left eye drooping and corner of mouth drooping when smiling. Most noticeable when smiling.
Janet Janssen

Beamsville, Ontario (Canada)
Left
2002
No

Yes
1
05/13/08
Dr. Anthony Kaufmann
Winnipeg (Canada)
No

MVD Comments: Update as of 06/18/08: My surgery was safe; I have recovered very quickly and well; I have no hearing loss, no Bell's Palsy and no bad headaches. I’m back to work full-time, bicycling, walking, busy as ever. All I have is a small scar behind my ear, some numbness on the left side above the incision site, and some very slight swallowing difficulty with dry foods. Most of the time my spasms seem to be as strong as before.
Gary Janzen
Former Memb.
Vanderhoof, British Columbia (Canada)
Left
1993
No

Yes
1
10/24/05
Dr. Sahj Paul
North Vancouver, British Columbia (Canada)
No

MVD Comments:
Dick Jarvis

Haverhill, MA (USA)
Right
1996
Yes
No
Yes
2
07/31/08
Drs. Jannetta and Sekula
Pittsburgh, PA (USA)
Yes

Botox Comments: No longer effective, considering surgery.

MVD Comments: Update as of 08/01/08 - Had MVD #2 yesterday at AGH in Pittsburgh and my recovery has been a lot easier than MVD #1. As before, I woke up "SPASM FREE" in the recovery room with no other adverse affects from the procedure! I am so greatful to the HFSA and especially Drs. Jannetta and Sekula and their staff as well as the fine caregivers at AGH!! (MVD #1 with Dr. Jannetta on 10/26/06, was spasm free for 14 months).

Mike Jarvis

Manchester (United Kingdom)
Right
2006
No

No






Keith Jelinek

Wantagh, NY (USA)
Left
2001
Yes
Yes
No





Botox Comments: I had Botox injections three times. The first two times were very successful, but had a droopy eyelid and reddening of the eyelid. The third time (12/02), the results were not as good. The twitching is still occurring, but is minimal.
Carolyn Jender

Yorkville, IL (USA)
Right
2001
Yes
No
Yes
2
10/31/03
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: Update as of 02/08/09 - I am doing well and still spasm-free, although twinges do happen, and when they do I am so frightful that the spasms are returning. I still have the numbness/paralysis in one spot on my face from the Botox. I do hope that before anyone uses Botox, or continues to use it for a long period of time, they consider the possible lasting side effects. (MVD #1 preformed on 10/23/03, also by Dr. Kassam, was stopped to improve the opportunity to preserve hearing.)

David Jensen

Malvern, PA (USA)
Left
1986
Yes
No
No




Botox Comments: Controls for 3-4 months.
Jane Jeziorski

San Jose, CA (USA)
Left
2000
Yes
Yes
No




Botox Comments: Botox very effective for the eye twitch; not so for the facial twitch. Had injections in the cheek area and ended up with a "Howdy Doody" smile...Oh Yucch....
Bonnie Johnson

Portland, NY (USA)
Left
2003
Yes
Yes
No




Botox Comments: Last year I received a Botox treatment and 3 days later my entire left side 'fell' to where I was unable to see out of my left eye.
Jeff Johnson

Boulder, CO (USA)
Left
2002
No

Yes
1
01/22/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Click here to see my "Personal HFS History".
Kathy Johnson - TN

Knoxville, TN (USA)
Right
2000
Yes
No
Yes
1
08/16/06
Dr. Michael Horowitz
Pittsburgh, PA (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments:
Kathy Johnson - VA

Mechanicsville, VA (USA)
Right
1984
Yes
No
Yes
1
07/16/97
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Mixed results - stopped spasms for a few months but at the expense of temporary muscle paralysis that sometimes left me looking like a stroke victim.

Click here to see my "Personal HFS History".

Post MVD Conditions - Scalp is still tender at site of incision even after all this time!
R. W. (Bob) Johnson

East Helena, MT (USA)
Left
1998
Yes
No
Yes
1
07/11/03
Dr. Fred G. McMurry
Billings, MT (USA)
Yes

Botox Comments: Spasm Free for first 3 days. Some spasms on day 4,5,&6.
Wendy Johnson
Inactive Memb.
Douglassville, PA (USA)
Left
1992
Yes
Yes
Yes
2
10/19/99
Drs. Jannetta & Kassam
Pittsburgh, PA (USA)
No

Botox Comments: It's better than no treatments.

MVD Comment - I wish to be fixed. Dr. Kassam will not operate again, I am researching other facilities for help. I find it to be a hideous way to live. I can not get up for three days at a time due to serious head pain.
Bruce Jones

Toronto, Ontario (Canada)
Right
2004
No

Yes
1
06/22/09
Dr. William S. Tucker
Toronto, Ontario (Canada)
Yes

MVD Comments: Update as of 09/03/09 – My MVD went very well with no complications. Surgeon said most extreme case he has seen in 20+ years of doing procedure. Normally has to search for site of compression but in my case nerve 'as flat as a pancake'. My only bad reaction was to the morphine the first day/night which caused me to puke bile. Jello and fruit juice at first. Had very little appetite, especially when confronted with hospital food. Up and was able to walk on the second day. They took out all the drips, shunts, etc. in the afternoon. Was able to eat solids that night. The reaction to morphine and Tylenol 3's continued Tuesday night, thank heavens for inter-muscular Gravol. Went onto ordinary Tylenol from then on. Wednesday was better and was able to keep down solids. Walked laps around the surgery floor several times and physiotherapist made me do stairs, balance, etc. Lots of naps. Thursday was released home. Good to be home and resting in own bed. Lots of sleeping. Back at work full days on Monday, July 13 after 3 weeks of home recuperation. Facial spasm gone. What a joy and relief to be able to smile, wink, raise my eyebrow, etc., without face contorting and twitching.
Jennifer Jones

Idaho Falls, IL (USA)
Right
2008
Yes
Yes
No





Botox Comments: Update as of 09/27/09 - Went for my first botox injection on 08/04/09 and two days later the twitching stopped. So far, it hasn't started again so I'm very pleased with the botox results.
Joy Jones

Wellington, FL (USA)
Left
2004
No

No






Mark Jones

Ottawa, IL (USA)
Right
1997
Yes
No
Yes
1
03/14/02
Dr. Gail Rosseau
Chicago, IL (USA)
No

Botox Comments: I was desperate for some relief, it did the job. I felt a cycle of relief of my symptoms with each set of injections, good for a month then slowly the symptoms or variations of my original symptoms would appear.

MVD Comments -
Richard Jones

Seattle, WA (USA)
Left
1993
Yes
Yes
No





Botox Comments: Good results, however diminishing in effective length of time. Been doing it every 7-12 mos for 8 years
Shannon Jones
Former Memb.
Wichita, KS (USA)
Left
1999
No

Yes
1
05/29/02
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Click here to see my "Personal HFS History".
Jean Joseph
Former Memb.
Altoona, WI (USA)
Left
2006
No

Yes
1
04/22/08
Dr. Michael J. Link
Rochester, MN (USA).
Yes

MVD Comments: Update as of 04/27/08 - Everything went really well and I have been completely “SPASM FREE” since awakening. Was in ICU for 24 hrs, then moved to the neuro floor. Everyone at Mayo was great, never left my side for the first 24 hrs. 04/25, then late that evening I started running a fever, had a really stiff neck, incredible headache and earache. Went to the ER here in Eau Claire, they did a CT scan and said I had to go back to Rochester for further evaluation. So after the 2 hour return car trip they needed to rule out an aneurysm or meningitis. What they thought they saw on the CT scan wasn’t an aneurysm but the mesh they used to piece my head back together. No idea where the fever came from but I am back home once again and feeling much better this evening.
Bob Josephs

Monroe Township, NJ (USA)
Right
2005
Yes
Yes
No





Botox Comments: First treatment (January 2006) worked for about two months. Second treatment (April 2006) is not working at all. Slow eye blink in affected eye, can't whistle, and distorted smile.
Dianne Joyce

Sydney (Australia)
Right

Yes
No
Yes
1
04/15/04
Prof. Michael Besser
Sydney (Australia)
Yes

Botox Comments: Using Botox for 2yrs. 4 injections immediatley around the eye every 3 months. Seems to reduce severity of spasm at eye. No obvious side affects. Perhaps a slight dryness in eyeball,(which could just be from the spasm).

MVD Comments: Update as of 04/24/08: I was one of the slow healers. Although I had absolutely no side effects from the surgery which went very smoothly it took me about a little over 2˝ years to be “SPASM FREE”. Even now though I am spasm free about 95% of the time I do have the occasional relatively low intensity spasm (but still noticeable) usually associated with tiredness or stress. As long as the frequency or intensity doesn’t increase from this level I am not complaining. In fact I feel very happy and lucky to be where I am today. I didn’t regret having the MVD even when I wasn’t spasm free initially.
Yoshiki Kagawa

Fresno, CA (USA)
Right
1997
Yes
No
Yes
2
06/21/02
Dr. Nickolas Barbaro
San Francisco, CA (USA)
No

Botox Comments: The Botox worked well at first, but lasted only for 3 to 4 months. As the spasms progressed down my face, the Botox was less and less effective. Side effects included dry eyes, blurred vision if injections were too close to the eye, and distored face.

MVD Comments: 2nd MVD resulted in an approximate 20% hearing loss and spasms remain. (1st MVD also with Dr. Nicolas Barbaro at UCSF Medical Center, San Francisco, CA on 01/11/02).

Teri Kahlden/B>
Former Memb.
Durant, OK (USA)
Right
2005
No

Yes
1
05/18/07
Dr. Jonathan White
Dallas, TX (USA)
Yes

MVD Comments:
Jayne Kaiser

St. Thomas, Ontario (Canada)
Right
1988
Yes
Yes
No





Botox Comments: Helps condition for 3 months.
Jeryl Kam

Aiea, HI (USA)
Left
2008
Yes
Yes
No





Botox Comments: Botox around eyes and cheek. Seems the treatment may have been too strong. Left eye couldnt blink naturally so had to close both eyes from time to time to avoid dryness and also rest right eye which kept "winking."
Bobbie Kaplan

Willowbrook, IL (USA)
Left
1985
Yes
Yes
Yes
2
10/06/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: I have been taking Botox for about 10 years.They seem to lessen the severity of the spasm but does not stop the spasm altogether. Every time I have a shot I tell myself it is the last one, that I don't need it, but after a couple of months the spasms are very strong and hinder my vision. No side effects (at least as far as I can tell) so I keep getting the shots.

MVD Comments: (MVD #1 on 10/16/88 with Dr. Howard Reichmann, Maywood, IL (USA))
Denise Kaplan

Jackson. NJ (USA)
Right
2005
Yes
No
Yes
1
12/03/09
Dr. Peter J. Jannetta
Pittsburgh, PA (USA).
Yes

Botox Comments: botox.. 1st treatment too much by mouth..looked like bells palsy, 2nd treatment by eye only..much better but still have minor twitching, etc.

MVD Comments: Update as of 12/07/09 - I am so happy to report I woke up completely SPASM FREE, NO vomiting, nausea, or vertigo. I can't believe how great I feel and how blessed I am. I have no problem walking or doing things for myself. I feel like a new person and can't wait to go back home and participate in life again.

Barbara Kappel

Kankakee, IL (USA)
Right
2000
No

No






Fazale Kareem

Karachi (Pakistan)
Left
2001
Yes
No
No





Botox Comments: Botox did not work properly. On the contrary I found my left face disfigured and blinking increased.
Mike Karim

Santa Clarita, CA (USA)
Right
2003
Yes
No
Yes
1
10/24/07
Dr. John Alksne
La Jolla, CA (USA)
Yes

Botox Comments: Tried Botox for about 3 years. Results were unreliable. No side effects. Smile seems to be getting crooked. Stopped Botox in Feb.2006.

MVD Comments: Update as of 10/25/07 - I had my successful surgery yesterday with Dr. Alksne in San Diego. Dr. Alksne is great, and I woke up spasm free today. I am writing this e-mail from the hospital. I have a severe headache and some balance issues, which is to be expected. I am keeping my fingers crossed.

Jean Karls

Madison, WI (USA)
Right
2006
No

No






Janice Karnes
Inactive Memb.
Harrisonburg, VA (USA)
Right
1994
Yes
No
Yes
1
09/25/03
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: My last injections were June 2002. I can't lift my eyebrow and my face is saggy - is that HFS or the residue of Botox?

Click here to see my "Personal HFS History".

Yuko Kato

Fremont, CA (USA)
Left
2005
No

Yes
1
05/01/08
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

MVD Comments - Update as of 12/8/08 - Spasms almost gone with approx. 95% improvement. I have become more active socially, which I am extremely happy about. Yipeeee!!!
Karol Katz

Kansas City, MO (USA)
Right
2005
Yes
No
No





Botox Comments: Had one set of injections 7 weeks ago. Still have mild twitch--and my face is contorted. My eye does not close and my mouth droops.
Debbie Kelly
Former Memb.
Pompton Plains, NJ (USA)
Right
1988
Yes
No
Yes
1
06/99
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: The surgery gave me a large portion of my confidence back. I became more the person I was before the spasms started. The surgery and Dr. Jannetta were both a miracle in my life. Would I do it again...You bet!
Marylou Kelly
Inactive Memb.
Seminole, FL (USA)
Left
2000
Yes
No
Yes
1
10/08/04
Dr. Michael Dogali
Clearwater, FL (USA)
No

Botox Comments: had a black and blue eye, couldn't shut my eye properly. It did last about 3 months.

MVD Comments: Still have eye and facial spasms, clicking in left ear during spasms. I had infection after the operation from the mesh that covered my skull. I took oral anti-biotics for 8 weeks and then had IV antibiotics for another 6 weeks, ended up with another surgery to remove the infected mesh.

Robert Kelly

Bohemia, NY (USA)
Left
1973
No

Yes
1
04/15/99
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

MVD Comments - At first spasm free but spasms returned a few weeks after surgery and presently (4/03) are as bad as they have been. In addition hearing loss on HFS side is significant.
Susan Kelly

Denver, CO (USA)
Right
2005
Yes
Yes
No




Botox Comments: I tried Botox 04/10/06 and I am experiencing some reduction in spasm.
Ursula Kennedy

Sussex, (United Kingdom)
Left
1990
No

Yes
1
09/28/04
Prof. Hugh Coakham
Bristol, England (United Kingdom)
Yes

Click here to see my "Personal HFS History".MVD Comments: Only a slight flutter remains.
Linda Kepler

Lawrenceville, GA (USA)
Left
2005
Yes
Yes
No




Botox Comments: I had my first botox injection on 11/30/07. It has helped a bit, they said it would take some time so I am still hoping for some relief.
Agnes Kerr

Palm Beach Gardens, FL (USA)
Right
2006
No

No






Brian Kerrigan

Essex, CT (USA)
Right
2000
No

Yes
1
11/02/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: Click here to see my "MVD Diary".
Asia Kho

(Singapore)
Right
2004
No

Yes
2
02/20/09
Dr. Alvin Hong
(Singapore)
Yes

Botox Comments: I began Botox in May 2004, with an interval of 4-6 months, until September 2008.

MVD Comments: Update as of 02/28/09 - I'm home after my successful MVD #2 and I'm spasm free with no loss of hearing. (MVD #1 on 02/16/09 also with Dr. Hong).

Eric Kho

(Singapore)
Left
1997
No

No






Cheryl Kight

Sellersburg, IN (USA)
Left
2005
No

No






Deborah Kilgore

Mannford, OK (USA)
Right
2009
No

No






Deah Killpack

So. Ogden, UT (USA)
Left
1986
Yes
Yes
No





Botox Comments: About 80% effective. It helps decrease my headaches and works very well around my eye, but when given around my mouth, I can't smile and I bite the inside of my lip.
Tim Kim

Issaquah, WA (USA)
Right
2005
No

Yes
1
11/02/09
Dr. Varun Laohaprasit
Bellevue, WA (USA)
Yes

MVD Comments: Update as of 11/07/09 - The surgery went successfully and I woke up SPASM FREE!!! The side effects: dizziness with head movement and the hearing problem. I cannot hear well on my right side - all muffled up. However, when it "pops", although not sure when that moment might be, I am hopeful that I can hear well again. Depending on the position of how I am lying or sitting down, the pressure to the ear feels different. Will see how it changes over the time as I recover from the surgery.
Kathleen Kirsan

Lincoln, CA (USA)
Left
1985
Yes
No
No





Botox Comments: Only stopped it for 2 months, made side of my face sag, expensive.
John Kirsch
Inactive Memb.
Newton, IA (USA)
Left
2004
Yes
No
Yes
1
07/29/08
Dr. John M. Tew
Cincinnati, OH (USA)
Yes

Botox Comments: Does not work, painful to have injected in face.

MVD Comments: Update as of 07/31/08 - My 7th nerve was VERY compressed. There was some issues with my hearing aids and the possible loss of more hearing but Dr Tew monitored hearing throughout the surgery which resulted in NO hearing problems at all.

Doug Kirton

Kitchener, Ontario (Canada)
Right
1998
Yes
No
Yes
1
06/07/05
Dr. Michael Tymianski
Toronto, Ontario (Canada)
Yes

Botox Comments: Botox did not eradicate symptoms; it only lessened them. It caused facial asymmetry and affected my eyesight.

MVD Comments: As of 07/25/05 - My MVD surgery for HFS was successful, although I did not expect the recovery period to be so arduous. I experienced severe headache and nausea for about 10 days following the procedure. Seven weeks later I am still experiencing some vertigo and dizziness which may be due to swelling and fluid in the inner ear. I believe this problem is abating, although the progress is slow. My surgeon has referred me to an inner ear specialist if the symptoms persist into September, (or 6 weeks following my first post surgery follow-up appointment).
Steve Kiser

Goose Creek, SC (USA)
Left
2003
Yes
No
No





Botox Comments: I tried Botox twice. The first time it caused my face to droop and would not let my left eye close entirely. This caused my eye to dry out while I slept, and this caused a bad infection in my eye. This was very serious to because I am blind in my right eye. My doctor talked me into trying a lesser dose for attempt number two. This did not help me at all. I will not use botox again.
Cindy Kline

Ft. Collins, CO (USA)
Right
2000
Yes
No
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Nicole Klotthor

Sunland, CA (USA)
Right
2006
No

No






David Knoppert

London, Ontario (Canada)
Right
1998
No

No






Sherry Knox

Washburn, ND (USA)
Right
1974
Yes
No
No





Botox Comments: Injection by the right eye in 1983 and it helped quite a bit but never completely got rid of the problem. The right side of the face seemed to get a bit more droopy and slowly the twitching and spasm has returned. This last year it has gotten worse fast.
Diane Koch

Westlake, OH (USA)
Left
1999
Yes
No
No





Botox Comments: Very effective in the beginning. Later most difficult to get right in the face, always some droop. Works good on keeping the eye open.
Calven Koh

Petaling Jaya (Malaysia)
Right
2004
Yes
Yes
No





Botox Comments: Manages to reduce the spasm for 3-5 months only.
Eileen Kondraski

Wilkes-Barre, PA (USA)
Right
2001
Yes
No
No





Botox Comments: I have seen 3 neurologists which all have suggested Botox. I tried the Botox almost 2 years ago and it did nothing!(3 injections). I am thinking of trying Botox again. Trying to get an appointment with another neurologist out of town.
Judy Kokernak

Melbourne, FL (USA)
Right
1997
Yes
No
No





Botox Comments: Botox - the best treatment. I had to suspend the use because I'm on chemo.
Glenn Kosinski

Fairfield, CT (USA)
Left
2006
No

Yes
1
12/02/09
Dr. Fred G. Barker
Boston, MA
No

MVD Comments: Update as of 01/14/10 - My first week after MVD I was spasm free, not a one! Then the demon returned, not as bad but still there every now and then. I'm going on 8 weeks post-op, soon to see my doctor, time will really tell. I must say that I'm better than I was before surgery.
Jeremy Kratt

Goodrich, MI (USA)
Right
2000
Yes
Yes
No





Botox Comments: Botox, works well but just covers up. Just used once.
Karen Krueger

Cambridge, MN (USA)
Right

Yes
No
Yes
1
11/08/06
Dr. Michael J. Link
Rochester, MN (USA)
Yes

Botox Comments: paralyzed eyelids - but could still feel strong pulling in the muscles. Very dry eyes

MVD Comments: Update as of 12/09/06: It has been exactly one month since my MVD surgery on 11/08/06 t St. Mary's Hospital in Rochester, MN with Dr. Michael Link. I’m happy to report that I have been “SPASM FREE” free since waking up after surgery that day and for that I am very grateful.

My surgery lasted about 3 1/2 hours and Dr. Link reported that it was a very complicated surgery, with an artery going back through and between the 7th and 8th nerves and wrapping around. There were also many other smaller arteries that were involved. Dr. Link was very confident that they have taken care of the spasms completely and they will not return. The other complications that I am left with now are hearing loss in the right ear, weakness on the right side of my face, vertigo and loss of taste on the right side of my tongue particularly. All of these things have been improving except the hearing in my right ear.

Surgery was on a Wednesday morning and after recovery, I was moved to ICU for one night - on Thursday they moved me to the post op floor. Following surgery I had no spasms but had intense vertigo and double vision. Late Friday one of the nurses was determined to get me walking and we did it - but I was really only half there - but on the road to waking up. Saturday and Sunday went much better and Monday my doctors made the decision to move me to the Rehab Floor since I could barely use the bathroom on my own and could not get out of bed by myself. Tuesday I was moved to the Rehab Unit where I stayed for another 8 days until going home on 11/22/06. My hospital stay was 15 days and I am now going to Physical Therapy in Cambridge 3 times a week.

I was thinking in the hospital that the MVD was a mistake because recovery and some of the trade offs seem pretty drastic - but my husband helped me through that when he reminded me that I was nearly losing my mind with the constant spasms - and we now know from the results of the surgery that the spasms would have only become worse and the surgery would have eventually been more difficult for me. Like he just said yesterday - when I had spasms they were only getting worse - now after surgery I am daily showing progress in recovery so am daily getting better.

Right now there is no hearing that I can tell in my right ear, and I came home with a walker but I am able to walk throughout the house without help but I hold walls and countertops. My double vision is gone but I am having trouble with both eyes working together so it feels like I'm out of focus a lot. I am going to physical therapy and working on retraining my brain to work with my vestibular system which has been altered by the trauma to my 8th nerve (auditory). My right eye does not blink or shut, my right eyebrow doesn't raise and my mouth does not smile on the right side - the trauma to my 7th nerve.

All of this sounds miserable but I am convinced that Dr. Link did an outstanding job taking care of the spasm the very best he could given that he found difficult circumstances. He is very optimistic that the facial weakness is only temporary and that my equilibrium will be completely back to normal in a short amount of time. I had fantastic care at St. Mary's Hospital and we found that our Blue Cross Blue Shield insurance coverage was completely cooperative with all of my care - including the week in rehab and the ongoing rehab that was prescribed by the therapists at St. Mary's.

Franci Kruger

Tsitsikamma (South Africa)
Left
2001
No

No






Marianne Kruidenier

Goleta, CA (USA)
Right
2004
No

Yes
1
06/10/05
Dr. John Alksne
San Diego Medical Center, La Jolla, CA (USA)
Yes

MVD Comments: For details, click here to see my "MVD Diary.
Lori Krol

New Castle, PA (USA)
Left
1996
No

Yes
1
11/13/03
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: For details, click here to see my "MVD Diary.
Franci Kruger

Tsitsikamma (South Africa)
Left
2001
No

No






Raj Kumar

Boise, ID (USA)
Left
2007
Yes
No
No





Botox Comments: Didnt work.
Rudy Kurkjian

Temecula, CA (USA)
Right
2003
Yes

No






Victor Kwan

Toronto, Ontario (Canada)
Left
2003
No

Yes
1
05/29/07
Dr. Anthony Kaufmann
Winnipeg, Manitoba Canada)
Yes

MVD Comments: Update as of 07/24/07: it has been 8 weeks since my MVD. I am still experiencing mild spasms each day but they are not too frequent, most of the time I am ok. As with everything else, I am doing great, just a slight feeling of numbness around the operation side, other then that I am great. My over all feeling is good and so it is a matter of time before I am completely healed. I had so happy to have the MVD.
For details, click here to see my "MVD Diary.
Angelia Kwok

Clovis, CA (USA)
Left
2001
Yes
No
Yes
1
11/05/08
Dr. Hrayr K. Shahinian
Los Angeles, CA (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: Update as of 05/10/09 - It happened all of a sudden, exactly 6 months and 4 days after my MVD.......I noticed my spasms were completely gone. For the last month, I got intermittent twitches that lasted seconds, but still occurred whenever I ate or opened my mouth wide or faced a stressful situation. Another trigger was biting my lip. I've been playing with it for 2 days now, just to be sure, and I can't even "make" it happen. I think I’m now finally spasm-free. For those who had MVD and still have spasms......give it time.....and have faith.....things will get better!

For further details, click here to see my "MVD Diary

Sallyann Ladbrook

Perth (Australia)
Right
2000
Yes
No
No





Botox Comments:
Linda Laffey

St. Louis, MO (USA)
Left
1975
Yes
Yes
Yes
1
07/15/85
Dr. Alexander Marchosky
St. Louis, MO (USA)
No

Botox Comments: Seemed fairly effective at first (about 10 years ago or more); however, has always produced drooping mouth, eye that stays dry and tends toward infection, muscle weakness.

MVD Comments: The MVD did not "work" at all. Had a consultation for MVD #2 consultation on March 29, 2004 with Dr. Robert Grubb , Barnes Hospital/Washington University Medical School, St. Louis, MO (USA). Following the consultation, decided to stay with Botox for now.
Manolo Lagahit

Tacoma, WA (USA)
Left
1991
No

No






Jose Lagos

Naples, FL (USA)
Right

Yes
Yes
Yes
1
07/15/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Sometimes effective

MVD Comments: As of 08/18/05, "SPASM FREE" but had a complete hearing loss on the HFS side and experience vertigo and balance problems.
Joseph Lai

Toronto, Ontario (Canada)
Left
2001
Yes
No
Yes
1
05/08/07
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Tried botox once. But I am concerned with the long term effectiveless of the drug and its effect on facial nerve.

MVD Comments: For details, click here to see my "MVD Diary.

Lamar Lampkin

Montgomery, TX (USA)
Left
2000
No

No






Ruth Landers

Fort Worth, TX (USA)
Left
2005
No

No






Catherine Landis
Inactive Memb.
Los Angeles, CA (USA)
Left
2000
Yes
No
Yes
1
03/14/02
Dr. Hrayr Shahinian
Los Angeles, CA
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".
Leesa Lane

Lake Panasoffkee, FL (USA)
Right
1991
Yes
No
Yes
1
06/99
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Post MVD Conditions - Facial weakness
Laura Laney

Portland, OR (USA)
Left
2006
No

Yes
1
08/27/08
Dr. Hrayr K. Shahinian
Culver City, CA (USA)
Yes

MVD Comments: Update as of 12/20/08 - I am spasm free with no hearing loss and no side effects.
Joanna Langhorne

Nice (France)
Left
2007
No

No






Ellen Langley

Manchester, NH (USA)
Left
2003
No

No






Carol Lanham

Woodstock, OH (USA)
Left
1998
Yes
No>
Yes
1
05/03/06
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments:

Susan Lankford

Abilene, TX (USA)
Left
2007
Yes
No
No





Botox Comments: I tried three sets of injections. They worked for a couple of weeks and then the HFS would return. The left side of my face started to look 10 years younger than the right side. It was not a permanent fix and I didn't think the time and cost involved was worth it.
Denise LaPoint

Gallatin, TN (USA)
Left
2001
Yes
No
No





Botox Comments: Botox 50 cc to 100 cc numbness around areas injected.
Cathy Larsen

Hastings, MN (USA)
Right
1991
Yes
No
Yes
1
11/08/04
Dr. Stephan Haines
Minneapolis, MN (USA)
Yes

Botox Comments: Initially effective but I've always had a lot of droopiness and I used to have excess tearing. I've been getting Botox for 13 years. For the past year it doesn't seem to stop the spasms much and I am very frustrated with the side effects.

MVD Comments: Update as of 11/09/07 - I am delighted to be able to say I am still SPASM FREE ! Immediately after finding this group I knew a MVD was right for me. Although my surgery was 3 years ago, I have only been spasm free for a little less than 2 years as it took 14 months post op for my facial nerve to heal completely. There were many times I thought my surgery was unsuccessful, as did my neurosurgeon, but patience paid off in the end. (I had HFS for 14 years with many Botox treatments during that time). I am going to send Dr. Haines a thank you note as he changed my life by taking care of my facial "deformity". He did train under the fabulous Dr. Jannetta so my thanks to him as well.
Mary Larson

Arlington Heights, IL (USA)
Right
1994
Yes
No
Yes
2
08/05/04
Dr. Peter J. Jannetta
Pittsburgh, PA
Yes

Botox Comments: Injections beginning in 1999;six injections (upper and lower eyelids and cheek) resulting in dry eyes and slight paralysis and drooping of right side of mouth. Effective in cessation of spasms for a short period of time. Botox injections every four to six months, last series not as effective.

MVD Comments: Update as of 08/04/08 – It’s my 4th anniversary of MVD #2. After my 1st surgery, I said I would not hesitate to go back if I needed a 2nd one. Little did I know that I would do just that. But I enjoyed the short time I was spasm free after the 1st one and just had to try again. Four years being spasm free is truly a wonderful gift for which I am so thankful. Granted there have been a few times when I became anxious because of slight twitching, wondering just where it was headed. I am so grateful for this wonderful support group and for what it did for me when the members numbered around 180 when I joined, and for what it continues to do in the way of supporting others. (MVD #1 with Dr. Jannetta on 01/30/03 and was spasm free for 1 year).

Rosalie Lau

Sydney (Australia)
Left
1996
Yes
No
Yes
1
10/20/09
Dr. Michael T. Biggs
Sydney, (Australia)
No

Botox Comments: Experienced eyelid droop but this problem stopped after reducing dosage for eyelid. Movement during injection can also cause severe bruising around eye. First 2 weeks it's difficult to close eye. Effective around eye area but more difficult to control spasms around mouth.

MVD Comments: Update as of 10/22/09 – I feel absolutely great - eating and walking normally, no hearing loss or any other complications except for the ear fullness thing which doesn't bother me much. Initially, I woke up spasm free but the last 2 days have experienced some twitching - not anything like before but still a worry. My neurosurgeon was happy with the surgery, said the monitoring was encouraging. He found an artery (the AICA) pressing on my facial nerve. He moved that away and padded it with Teflon. But there is apparently a smaller blood vessel that goes between my 7th and 8th nerve. He said I must have been born with it, and he can't do anything about it. I hope in time all the twitching will stop - I guess after all I had HFS for 13 years.

Polly Layer

Redwood City, CA (USA)
Right
1991
Yes
Yes
No





Botox Comments: Botox does help, but I do need the shots every 4-5 months.
Becky Layman

Roanoke, VA (USA)
Right
2002
Yes
No
No





Botox Comments: They gave me too much and my mouth has never been the same!
Nancy Leahy

Westerville, OH (USA)
Right
2005
No

No






Teri Ledbetter

Meridian , ID (USA)
Left
2008
Yes
No
No





Botox Comments: Botox injection 6/2009. Adverse reaction, he hit a nerve which caused my left side into paralysis.
Alton Lee

Singapore (Singapore)
Left
2001
Yes
Yes
No





Botox Comments: It help for 3 months to 4 months.
Calvin Lee

Shanghai , (China)
Left
2005
No

No






Katherine Lee

Huntersville, NC (USA)
Right
1994
Yes
No
Yes
1
08/21/07
Dr. Anthony Asher
Charlotte, NC (USA)
Yes

Botox Comments: Good results, usually. Results seem quite dependent on the skill / experience level of the doctor. Last injection had no effect, however.

MVD Comments: Update as of 04/25/08 - I woke up from my MVD surgery with “NO SPASMS” and no spasms to date.

Lawrence Lee
Inactive Memb.
Oak Park, IL (USA)
Left
1997
Yes
No
Yes
1
11/14/07
Drs. Peter J. Jannetta and Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: I have been using Botox for many years now to treat the left side of my face. Sometimes it works but its always temporary. When the Botox kicked in, it made me forget I even had HFS. But after 3-4 month, it comes back and its upsetting. That’s the problem with Botox, when it works, it make you ignore the severity of HFS. After awhile the spasm has moved down the left side of my face and is pulling my mouth and neck. Because HFS gets worse over time it made me realize I have just been treating the symptoms, which is like ignoring I have this, when I should have been looking for a permanent solution all along.

MVD Comments: Update as of 03/04/08 - I am very happy to report that although it took 4 months, I am now spasm free! I had my surgery with Dr. Peter Jannetta and Dr. Ray Sekula at Allegheny General on Nov. 14, 2007. My spasms were still there after the surgery but not as intense, and gradually got less and less. Only when my wife asked me a few days ago how my spasms have been did I realize, oh it's gone! I didn't even notice because it was so gradual and slight. I have to give deep thanks to Dr Jannetta and Dr Sekula for a great successful MVD. They are the absolute best and they have given me my life and my confidence back. And thanks to the HFSA group, I was able to make an informed decision about doing the MVD. Thank you.

Mary Lee

Croydon (United Kingdom)
Right
1996
Yes
Yes
No





Botox Comments: Botox is the only thing that relieves it temporarily for sometime 6 weeks to 8 weeks. I'm impressed as only thing that seems to work for awhile but sometimes I get bad headaches.
Neal Lee
Former Memb.
Bryan/College Station, TX (USA)
Left
1998
No

Yes
1
12/10/02
Dr. Rob Parrish
Houston, TX (USA)
Yes

MVD Comments - Almost total hearing loss in left ear and minor balance problems. (12/15/03)
Setiaman Lee

(Singapore)
Right
1996
Yes
No
Yes
1
09/21/04
Dr. Tseng Tsai Yeo
(Singapore)
No

Botox Comments: When the spasms become worse and I can't hold them I visit my doctor to get Botox. Have gotten Botox injections twice, so far it stops the spasms but I lost my smile.
Nancy Lehenbauer

Worcester, NY (USA)
Left
2003
No

No






Bill Lehn

Shakopee, MN (USA)
Left
2000
Yes
Yes
Yes
1
12/20/05
Dr. Mark Larkins
Regions Hospital, St.Paul MN (USA)
No

Botox Comments: Botox for 2.5 years. Worked at first to mask the effects but the spasms were sill there. (see below)

MVD Comments: Update as of 12/20/07 - Two years after my surgery the spasms are no better or worse. I have learned to live with them but need the Botox every three months. My doctor has found the correct spots/dose to get me through for the 3 months. I often wonder "what if I would have gone to PA for the surgery, would they been able to find my compression because they do so many surgeries”? If I knew they could fix it I would try it again. I have learned to deal so no new plans at this point.

Anne LeMay

Zephyrhills, FL (USA)
Left
1990
Yes
No
Yes
1
10/28/04
Dr. Peter J. Jannetta
Pittsburgh, PA
Yes

Botox Comments: I had Botox injections by my neurologist every 3 months for 5 years. The twitching never completely went away with the injections, but they did seem to lessen for a month or so after each treatment. I did lose a lot of muscle tone in my face and eyelids and found that looking in the mirror was more depressing than the twitching was. My last Botox treatments were two years ago, when I had what I believe was a bit of a remission (the twitch was still there, but the intensity was lessened). I stopped the Botox at that time.

MVD Comments: I feel like a new woman.
Helen Lembeck

Chula Vista, CA (USA)
Left
2004
Yes
Yes
No





Botox Comments: Botox injections every three months - works to prevent the fluttering and spasms, but results in paralyzing the left side of my face!
Joelle Lemery
Inactive Memb.
Chalons en Champagne (France)

Right
1992
Yes
No
Yes
1
05/09/06
Dr. Jacques Magnan
Marseilles (France)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Coments:

Douglas Levangie
Former Memb.
New Liskeard Ontario (Canada)
Left
1996
Yes
No
Yes
1
06/13/01
Dr. Fred Gentili
Toronto, Canada
No

Botox Comments: Had injections six times. The first injections worked fairly well for about three months. Each subsequent injection worked less well until no relief at all. No serious side effects with injections, some trouble closing left eye for the first two weeks after injections and numb feeling in left side of face.

Post MVD Conditions - As of 6/22/01, awoke with spasms, but spasms seem to have subsided slightly over the last week, but still there.
Cherie Lewis

Worcester, NY (USA)
Left
2002
No

No






John Lewis
Former Memb.
Colorado Springs, CO (USA)
Left
1985
Yes
No
Yes
1
01/07/01
Dr. Michael Brown
Colorado Springs, CO (USA)
No

Post MVD Conditions - Residual eye, mouth twitches
Joy Lewis

Chicago, IL (USA)
Right
1980
Yes
No
Yes
1
07/24/03
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: About 2 years ago started Botox injections, first one was heaven and the rest have helped as well. The first time, that side of my face was so relaxed and as a result, my whole body was much more at ease in NOT fighting the spasms (realized how subconscious that physical reaction was). Have had injections 3-4 times a year for about the past 2 years and they have been very effective for me.

MVD Comments: Update as of 07/29/08 – I have been “SPASM FREE” for the last 2 to 2 1/2 years. It was a very slow process and a bit confusing, especially when trying to understand whether I would need a second MVD or not. I kept seeing small improvements, so I decided to wait. It paid off. I hope to write my diary, w/emphasis on long term healing -- by year's end! The HFSA made it all possible! I will be forever grateful!

Marcella Lewis

West Bloomfield, MI (USA)
Right
2006
No

No






Marcia Licata

Pittsburgh, PA (USA)
Left
1999
Yes
No
Yes
1
03/20/01
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Post MVD Conditions - Post MVD Conditions - Left side, (MVD side), still has some ear fullness and hearing has been slightly diminished.
Tana Lim

Moraga, CA (USA)
Left
1998
No

No






Karen Lindsey
Former Memb.
Richmond, VA (USA)
Left
1994
No

Yes
1
01/25/03
Dr. K. Singh Sahni
Richmond, VA (USA)
Yes

MVD Comments - Til this day I think that I would ordinarily be twitching and am so relieved that I don't twitch anymore. It is has given me my confidence back.
Pam Lindsey/B>
Former Memb.
Sylacauga, AL (USA)
Right
2004
No

Yes
1
02/09/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: As of 02/13/06, Everything went great--I was able to leave the hospital on Friday 02/10/06. Have not had a spasm since I woke up from surgery and no jaw pain !!!! I have some fullness in my ears but other than that no complications at all.
Paula Lindsey

Molile, AL (USA)
Left
2005
Yes
Yes
Yes
1
07/12/07
Dr. Troy Middleton
Mobile, AL (USA)
No

Botox Comments: Does control spasms, but continued use is concerning.

MVD Comments: Update 05/30/09 Spasms returned days after surgery and continue to worsen. Began Botox within 3 months of MVD. I am now almost 2 years post MVD and am considerring returning to my neurologist for possible second surgery.

Peggy Lison

Madison, WI (USA)
Right
2005
No

No






Eric Little

Fisherville, KY (USA)
Left
2000
Yes
No
Yes
1
05/09/06
Dr. Laligam N. Sekhar
Seattle, WA (USA)
No

Botox Comments: I started in 2000 with Botox and hated it, but now that tegretol isn't working have had to go back to botox. Am on my second dose and it is having the usual side effects regarding loss of smile with only slight effectiveness.

MVD Comments: Update 10/02/06 (5 Months post-op) 1) Hearing Loss: almost 100% in the hfs ear. I can hear some random noises - as long as it's otherwise quiet. 2) Severe Facial Weakness: Very slight improvement, but mostly the HFS side is motionless, sometimes side. 3) Eyelid Doesn't Blink Properly - my HFS side eyelid wouldn't close all the way. Has improved a bit, but still isn't back to normal. 4) Occasional Flutters: because the HFS side is pretty much paralyzed, I don't get many twitches now. But I can kind of feel it still lurking "underneath", and I can hear slight buzzes when the flutters happen.

Other than that I am back to normal. My balance and taste have both returned, and the swelling in my tongue is gone. It didn't take long to put back on the 10 pounds I lost during the week of surgery.
Judi Liu

Redmond, WA (USA)
Right
1991
Yes
No
Yes
1
06/29/07
Dr. Robert C. Rostomily
Seattle, WA (USA)
Yes

Botox Comments: I had 3 injections. Only in the second month of 1st injection, I had peaceful time of spasm. It's not effective in my case. Compare my spasm before and after Botox (9 month period), before was more of twitching the muscle around the eyes and cheek with pulling up the corner of mouth, now spasm is close the right eye and pull up the mouth for several seconds (tightening not twitching), then let go.

MVD Comments:

Robert Lively

Las Vegas, NV (USA)
Left
2001
Yes
No
Yes
1
08/31/05
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Treated spasms well at start had to increase number of injections over time which caused appearance to be unbalanced along with a number of other uncomfortable side effects.

MVD Comments: Update as of 08/31/09 - Its been 4 yrs and still spasm free. I did loose my hearing in my left ear, hfs side. Have small problem with balance nothing major. All hfs symptoms resolved.

William Lockey
Former Memb.
Greenville, SC (USA)
Left
2002
No

Yes
1
09/03/04
Dr. Nelson Oyesiku
Atlanta, GA (USA)
Yes

MVD Comments: As of 12/02/04, Numbness in lower jaw from ear down to center of face, still have a hearing problem inner ear balance sometimes.
Alan Loffert

Orlando, FL (USA)
Left
1994
Yes
No
Yes
1
05/21/04
Dr. Albert Rhoton, Jr.
Gainesville, FL (USA)
Yes

Botox Comments: No real relief or benefit

MVD Comments: I lived with HFS for nearly 10 years and just about every picture of me during that period of time reflects my eye closed. Since having MVD in May 2004 I have had 100% relief and almost forget I ever had this problem. Can't beleive I waited so long to do it.
Brian Logue

Bedford, NH (USA)
Left
2008
No
N/A
No






Janet W. Long
Former Memb.
Richmond, VA (USA)
Left
1983
Yes
No
Yes
1
10/07/94
Dr. K. Singh Sahni
Richmond, VA (USA)
Yes

Botox Comments: Botox did not help. The one time it was used it caused facial drooping.

Post MVD Conditions - None

Susan Lopez

Chicago, IL (USA)
Left
2000
Yes
No
Yes
1
06/30/09
Dr. Christoper Getch
Chicago, IL (USA)
No

Botox Comments: Botox from 2002-2008. I stopped the Botox August 2008 because it became less effective as the years went by and sometimes I couldn't close my left eye, causing dryness. I'm was also tired of having the left side of my face paralyzed by Botox.

MVD Comments: Update as of 07/22/09 - I had my MVD 3 weeks ago and still have spasms. The doctor told me in the recovery room that there's no lateral spread, so he thinks he got the right spot, but that it will take the nerve some time to heal. Thanks to reading the experiences of others. I have had HFS for over 10 years, so I guess I can't expect the nerve to be healed immediately. Thanks to all of you for the encouraging words. I can't tell you how much comfort they bring me.

Ralo Lopez

Modesto, CA (USA)
Left
2004
No
N/A
No






Alice Lore

Lexington Park, MD (USA)
Right
2002
No
N/A
No






Jenny Low

(Singapore)
Right
2000
Yes
No
Yes
1
10/13/09
Dr. John Thomas
(Singapore)
Yes

Botox Comments: It was effective in the beginning but the twitching duration is getting shorter and shorter as the years goes by. Sometime the face was felt like being pulled to one side.

MVD Comments: Update as of 11/03/09 - Still no sign of twitching, the headache and giddiness is getting better and better. I consider myself “SPASM FREE” since surgery and wish that this spasm free status will be with me for life. My operation was considered a straight-forward one with no complications. I'm glad that I made this decision and have never regretted it!

For details, click here to see my "MVD Diary".

Ann Loyd
Inactive Memb.
Houston, TX (USA)
Right
2002
Yes
No
Yes
1
11/14/05
Dr. Subrata Ghosh
Houston, TX (USA)
Yes

Botox Comments: Botox worked for 3mo at a time. It worked to slow down but not stop the twitching.

Click here to see my "Personal HFS History".

MVD Comments:
Kimberly Luketic
Former Memb.
Pittsburgh, PA (USA)
Left
1998
No

Yes
1
09/06/00
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Post MVD Conditions - None
Dana Lucas

McMinnville. OR (USA)
Left
2000
Yes
No
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Peggy Lucas

Homer City, PA (USA)
Right
2004
Yes
Yes
No





Botox Comments: Botox injections twice - first one they did the whole side of my face (even tho' the Dr. had diagnosed it as blepharospasm) & my mouth developed an extreme droop. The first one did not help my eye much. The second set was done just around the eye & it seems to help for the eye - now I'm having more spasms in the cheek & mouth area.
Reba Lucas

Jenkins, KY (USA)
Right
1996
Yes
Yes
No





Botox Comments: Botox has helped me to keep my sanity; however, I wish I did not have to take it. It leaves me with the sagging face & lopsided smile. It helps with my eye, but creates havoc from the eye down.
Kathy Lyles

Fredericksburg, TX (USA) Sun City, AZ (USA)
Left
2002
No

Yes
1
10/12/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: Update as of 01/12/08: I am spasm-free, after 15 months! I had not given up hope and have reached the goal--finally! I hadn't noticed any activity in a couple weeks, but I performed the test yesterday--I scrunched up my face--and nothing! I looked carefully below the eye, and it is calm. The ONLY abnormal thing I noticed is when I raised my eyebrows, there was a slight quick twitching in my eyelid, but when I lower my eyebrows, it is gone. That's close enough for me, to declare myself "SPASM FREE". I hope my news is encouraging to those of you who had an MVD, but aren't there yet. After the MVD the spasms were very different. They were less frequent and less intense. But they WERE spasms, so I was not spasm-free--until now! Hallelujah!
Judy Lyman

Surprise, AZ (USA)
Right
1999
Yes
No
No





Botox - while it works, I don't like what it does. I have trouble forming some words, I have difficulty in drinking and eating, my eye dries out because I can't blink very well
John MacBain
Inactive Memb.
Carmel, IN (USA)
Right
1992
Yes
No
Yes
1
10/06/05
Dr. Troy Payner
Indianapolis, IN (USA)
Yes

Botox Comments: Tired of a drooping face

MVD Comments: For details, click here to see my "MVD Diary".

Victoria MacDonald

Melrose, MA (USA)
Left
2003
Yes
Yes
No





Botox Comments:
Douglas Macdougall

Medicine Hat, Alberta (Canada)
Left
1997
Yes
No
Yes
1
11/23/04
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: 2 rounds. Eye remarkably better. Cheek better. Mouth slightly better but lots of cheek biting when eating. Second round of botox less satisfactory, and led to decision to have surgery.
Deb Machak
Inactive Memb.
Gurnee, IL (USA)
Right
2004
Yes
No
Yes
1
08/06/07
Dr. Gail Rosseau
Chicago, IL (USA)
No

Botox Comments: My third botox treatment gave me bell's palsy, which took about 6 months to completely dissipate.

MVD Comments: Update as of 04/17/09 - The frequency of spasms has lessened since surgery. I was spasm free for 4 days following surgery. Significant spasms occur when reading fine print, speaking in front of a group, when I'm upset, or when I'm trying to concentrate.

Glenn MacLaren

Launceston (Australia)
Left
1996
Yes
No
No





Botox Comments: Not very effective. The facial distortions were severe (many people commented I had Bell's Palsy. Did not stop the twitching and the corresponding headaches in the right front of the head and the stiff nape of the neck.
Doug Magnuson

Willmar, MN (USA)
Right
2002
Yes
No
Yes
1
09/18/08
Dr. Michael J. Link
Rochester, MN (USA)
Yes

Botox Comments: Botox worked great the first time, each subsequent injection did not have the same effect for me as the very first injection. I was impressed the first time as it did relieve the symptoms. I was injected near the eye lid one time, experienced dry eye due to not being able to blink properly. Last Botox injection was May 2007.

MVD Comments: Update as of 12/09/08 – Follow-up at Mayo Clinic Audiogram showed no hearing change post-op, Dr. Shelly Cross (neurologist) and Dr. Michael Link (neurosurgeon) very pleased with results. Dr. Link said that he’s reasonably sure that the spasms won't reoccur and that I am cured of the spasms. He was happy that I experienced no spasm post-op as that is not always the case. He advised that I can resume all normal activities, lifting, etc. Hooray!!

Keira Majors

Huntsville, AL (USA)
Leftt
1994
Yes
No
Yes
2
11/26/01
Dr. Winfield Fisher, III
Birmingham AL (USA)
Yes

Botox Comments - Botox before my MVD seemed to help, but I had to get enough to basically paralyze the entire left side of my face. I have 3 injections since my MVD and they have not helped at all. Before the first MVD, I never had any spasms involving the ear, but afterward, the Stapedius muscle inside my ear was the muscle most frequently involved in spasms,and it cannot be reached with Botox.

MVD Comments - MVD # 1&2 with Dr. Winfield Fisher, III, 2nd on 11/26/01, 1st on 08/09/01 - was Spasm Free after #2 until 12/02.
Sandra Maker

Brantford, Ontario (Canada)
Left

No

Yes
1
05/07/07
Dr. Michael Tymianski
Toronto, Ontario (Canada)/FONT>
No

MVD Comments:
Marife Maliksi

Medina, WA (USA)
Right
1983
No

Yes
1
09/08/00
Dr. John Loeser
Seattle, WA (USA)
Yes

MVD Comments: For details, click here to see my "MVD Diary.
Evelyn Mandigo

Pittsfield, NH (USA)
Both
2003
No

No






Rick Manus

German Valley, IL (USA)
Left
1990
Yes
Yes
No





Botox Comments: At first they lasted 6 months. In the last two years they only last 2-3 months.
Abby Malseed

Harrisburg, PA (USA)
Right
1997
Yes
No
No





Botox Comments: They couldn't get the dosage correct, I suffered from paralysis.
Mary Mara

Pontiac, MI (USA)
Left
2004
No

Yes
1
05/17/07
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

MVD Comments: For details, click here to see my "MVD Diary.
Noel Mariano

Atlanta, GA (USA)
Right
2000
Yes
No
Yes
1
04/30/08
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments - Doesn't totally hide the twitching.

MVD Comments - MVD Comments - Update as of 01/04/09: My MVD went thru very well without any complications and no loss of hearing except for some movement in the right eye for a few days. It's been 8 months and no spasm at all and hopefully this will continue.
Bertha Marin

Houston, TX (USA)
Left
2001
Yes
Yes
No





Botox Comments: Have only had one treatment, about 5-6 injections, but not sure if I want to continue due to side effects that can occur.
Massimo Marini

Montville, NJ (USA)
Right
2001
Yes
Yes
No






Pam Marinus

Qualicum Beach, British Columbia (Canada)
Right
2005
No

Yes
1
03/16/07
Dr. Chris Honey
Vancouver, British Columbia, (Canada)
No

MVD Comments: Update as of 02/24/09 – In August 2007 I had a bit of twitching in my eye but it seemed to go away again after a month. In December 2007 it started again but a little here and there. In January 2009 it started again and has come back in full force. Today I am no different then I was before my surgery. (Was primarily spasm free for 23 months following MVD)
John Mark

Riverside, CA (USA)
Left
1993
No

No






Elizabeth Marsh

Lexington, KY (USA)
Right
2005
No

No





MVD Comments: Update as of 08/03/06 - Had MVD Consultation #2 on 08/01/06 with Dr. Peter J. Jannetta, Allegheny General Hospital, Pittsburgh, PA (USA). Dr. Jannetta indicated that woman my age usually have a small artery on the nerve and he would like me to return in 6 months for another EMG and appointment before deciding if surgery is the right course of treatment.
Valerie Marsh
Former Memb.
Rohnert Park, CA (USA)
Left
2002
No

Yes
1
02/13/04
Dr. Nickolas Barbaro
San Francisco, CA (USA)
Yes

MVD Comments - Update as of 10/19/04 - I had an immediate correction of the problem and so far no spasms at all have come back. As far as I can tell up to now, the surgery was 100% successful. There were some draw backs with the surgery. I have lost a significant amount of hearing in my left ear, and the area of the skull where they took out bone is still quite painful and generates muscle cramping. These two side affects are so minor to me that I hardly pay any attention to them. However, other people might find these side affect annoying enough to question the surgery. I don't because quality of life has improved even with the two minor side affects. I made the difficult, but correct decision. No one should have to suffer the hemifacial spasms if they don't have to.
Sheila Martens

Perryville, MO (USA)
Right
1998
Yes
No
No





Botox Comments: never took the twitch away, the face really pulled, & the eye droops, it closes when I try to read.
Mitch Martin

San Antonio, TX (USA)
Left
1989
Yes
Yes
No





Botox Comments: Typical good news, typical bad news. Dermatoligist administered. Problem is to get insurance to help pay.
Nelda Martinez-Flores

San Antonio, TX (USA)
Left
2006
No

No






Jeff Marzano

Chicago, IL (USA)
Right
2004
No

No






Mary Anne Maslanka

Locust Grove, GA (USA)
Left
2002
Yes
No
Yes
1
07/01/05
Dr. Jeffery Olson
Atlanta, GA (USA)
No

Botox Comments: My face swelled. Severe headache that lasted for days, severe bruising at injection sites, face drooped significantly...all with just one treatment...and my face was still in motion...did not try it a second time.

MVD Comments: Update as of 07/01/08 - My spasms are now worse than before surgery, affecting my speech and sight. They are not really painful, but very uncomfortable and I feel tired all the time. I do not currently have sufficient insurance to undergo another surgery.....I have learned to live with the inconveniences.
Brenda Masters
Former Memb.
Peoria Heights , IL (USA)
Right
1986
No

Yes
1
11/17/03
Dr. Patrick Tracy
Peoria IL (USA)
Yes

MVD Comments:
Donna Mattingly

Coxs Creek, KY (USA)
Left
2007
Yes
Yes
No





Botox Comments: It has helped but made my eye appear lazy. Still feel twitching in the eye and nose and a pulling on my mouth.
Emma Mawdsley

London, England (United Kingdom)
Left
2005
No

No






Russell Mayes

Woodbridge, VA (USA)
Left
2002
Yes
Yes
No





Botox Comments: Just started--did not get shots right near the eye--and as a result eye twitching so far is the same--very distracting--hard to carry on day-to-day work conversations with my eye all over the place!!
Robin Mayhew

Pipe Creek, TX (USA)
Left
1996
No

Yes
1
11/06/03
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Click here to see my "Personal HFS History".

MVD Comments: I wish I had had MVD surgery 8 years ago, when I was first diagnosed with HFS. It's good to have my life back .

Andrew McCarthy

McKerrow, Ontario (Canada)
Left
1998
Yes
No
Yes
1
11/15/06
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

MVD Comments: Update as of 01/04/07: My MVD on 11/15/06 with Dr. Kaufmann and his team at Winnipeg’s Health Sciences Centre was successful. I no longer have spasms on the left side of my face. Recovery has been going exceptionally well as I only suffered one severe headache following my discharge from the hospital but regularily took Advil for light headaches up to 4 weeks after surgery. Headaches have all but completey disappeared now. MVD did not result in any hearing loss, CF leak or bell’s palsy.
Diane McClain

Springfield, IL (USA)
Right
2003
Yes
No
Yes
1
08/16/04
Dr. Gail Rosseau
Chicago, IL (USA)
No

Botox Comments: I had my first series on 05/30/03 (28 injections). I have some drooping on the right side of my mouth, but I can live with that better than I could the spasms! Now I only have spasms in my lower face at night when I lay down, and not as many butterflies beating their wings in my ears. As soon as the spasms start up even slightly I will begin the process to obtain insurance approval and try it again (avoiding the location that caused the drooping) and hope it is as effective.

MVD Comments:
Frank McConnell

Clawson, MI (USA)
Left
2005
No

No






Jim McCormack

Charlotte, NC (USA)
Right

Yes
Yes
No





Botox Comments: Botox-works pretty good, but I must go to the neurologist about 3 times a year-injections.
Darrin McCoy
Inactive Memb.
Olathe, KS (USA)
Left
2004
Yes
No
Yes
1
10/31/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Only lastsabout 3 months and doesn't seem to stop the twitching completely. Stopped Botox as I'm pursuing a MVD.

MVD Comments: Update as of 11/21/07 - MVD was successful but for the first time in Dr. Jannetta’s 40 years, I developed hydrocephalus from the surgery. Was very sick and in ICU for last 1 1/2 weeks. Had 3 procedures total, including the initial MVD. They have theorized that if it is Chiari the hydro from it may have been his headache problem all along. Time and testing will tell. The spasms are still gone as of now and for that I'm so grateful!

Janice McCoy

Lewisville, NC (USA)
Right
2002
Yes
No
Yes
1
01/12/09
Dr. Mark A. Lyerly
Winston-Salem, NC (USA)
No

Botox Comments: Effectively stops spasms but only for a couple of months, and over 4 weeks of severe eye irritation after each treatment.

MVD Comments: Update as of 01/13/10 - No real changes to report. I am still having spasms. To me, they feel about the same, and actually at times around my mouth and cheek they feel worse, although around my eye there seems to be a very slight reduction in spasms. I still have some numbness around the incision area, although it is gradually lessening. There is a strong possibility that I will seek a second MVD in autumn of this year, this time with Dr. Jannetta.

Bonnie McGraw

Lyons, MI (USA)
Left
1991
No

Yes
1
06/13/06
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

MVD Comments:
Jim McDonald

St. Ignace, MI (USA)
Left
2001
Yes
Yes
Yes
1
06/21/06
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: works on occasion ... sometimes effective and sometimes like I never had it at all.

MVD Comments: As of 08/25/06 - 98% of facial palsy is gone, still no hearing in left ear & poor body balance, partial numbness on right side of hip and right leg but resuming regular activities.

Colleen McDoniell

Summerdale, AL (USA)
Left
2004
Yes
No
No





Botox Comments: Botox worked the first time, I had some minor droppiness of my eyelid and mouth but the spasms stopped completely for one year. I recently had my second injection and so far the only thing it has helped is my left eye no longer shuts completely during a spasm.
Molly McElvain

Pinckneyville, IL (USA)
Left
1998
Yes
Yes
No





Botox Comments: It seems to work for me for 3 months at a time, then it wears off and the spasms return.
Karen McFaddin

Sammamish, WA (USA)
Left
1981
Yes
No
Yes
1
02/23/01
Dr. John Loeser
Seattle, WA (USA)
Yes

Botox Comments: I think it was difficult for the Dr. to pinpoint the exact spot to insert the botox, sometimes I would have a droopy eye, other times a droopy entire left face though I remember one time telling him to "zap" the entire area as I was sick of the constant spasms!!!

Post MVD Conditions - Slight hearing loss, could be due to the aging; slight droop & weakness on MVD side of face but nothing I would consider an ongoing permanent complication.(12/14/03)

Brian McFarlane

Regina, Saskatchewan (Canada)
Left
2003
Yes
No
Yes
2
05/27/08
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: Didn't really do anything except cause my face to droop.

MVD Comments: Update as of 06/02/08 - My wife and I arrived back in Regina on the evening of 05/31/08. My surgery went well, and I woke up with “NO SPASMS”!! Oh, what a feeling! The headaches are very minimal, and at this time almost non-existent. Just to let things heal now. Thank you all for your thoughts and prayers. Time to rest,(MVD #1 with Dr. Kaufmann on 05/22/07).

James McGonigal

Chicago Ridge, IL (USA)
Right

Yes
Yes
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

Donna McGuffee

Woodworth, LA (USA)
Right
2003
No

No






Deb McIntosh

Independence, MO (USA)
Left
1998
No

Yes
2
01/30/07
Dr. Michael Chilton
Kansas City, MO (USA)
Yes

MVD Comments: Update as of 01/31/08 - My update is not a happy one. After being spasm free for 11 months my spasms have returned. Seems it was my Christmas present this year. I'm disappointed and not sure what to do now. I'm not ready to undergo another MVD at this point. As in the past, it will get to a point where I know I'm ready to do it again. The second MVD has left me without most of my hearing on the MVD side. Right now I'm just coping with it and hoping with warmer weather it will not be as frequent. The cold weather brings on a spasm every time I walk outside. And I have noticed bright direct sunshine will trigger it also. I'm extremely lucky to work with the same wonderful group of peers for 10 yrs. now and don't have to explain what is happening. And very grateful the spasms were gone long enough to enjoy my son's wedding. If I should decide I want to do it again, I will probably flirt with the idea of contacting Drs. Jannetta and Casey.(MVD #1 with Dr. Andrew B. Kaufman on 05/03/05, was spasm free for about 3 months)
Lynn McKay

Surrey, British Columbia (Canada)
Left
1992
Yes
Yes
Yes
1
11/10/01
Dr. Felix A. Durity
Vancouver BC (Canada) Seattle, WA
No

Botox Comments: Controls eye spasms to some extent, but not mouth area.

MVD Comments: Was spasm free immediately after MVD until April 2006, 4 1/2 years. Symptoms gradually emerged and I now require Botox to control spasms.

Gloria McKeague
Inactive Memb.
Dublin (Ireland)
Right
1999
Yes
No
Yes
2
08/19/09
Drs. Peter J. Jannetta & Ray Sekula
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox would leave my eyelid and mouth drooping. Other times I wouldnt be able to close my eyelid, which made sleeping and showering difficult (OOCH soap/shampoo). I'd have double vision and still could feel the spasm in my head. The shots would only last 4-6 weeks.

MVD Comments: Update as of 09/06/09 - I woke up the day after surgery with spasms with less intensity then before. For the next 4 days they became lighter and fewer until they stopped completely. I'm spasm free! (MVD #1 with Dr. Jannetta on 07/31/08 - Was spasm free for 3 months).

Charlotte McKinney
Former Memb.
Fredericksburg, VA (USA)
Right
1993
Yes
No
Yes
1
08/01/01
Drs. Kassam & Horowitz
Pittsburgh, PA (USA)
No

MVD Comments: For details, click here to see my "MVD Diary".
Sheila McLaughlin

Cincinnati OH (USA)
Right
2007
Yes
Yes
No





Botox Comments: I'm on my first Botox treatment, 02/20/09. So far, the twitching is more pronounced than before.

Scheduled for MVD on 03/05/10 with Dr. John Tew, University Hospital, Cincinnati, OH (USA).

Angela McMillen
Inactive Memb.
Little Rock, AR (USA)
Left
2002
Yes
No
Yes
1
07/06/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: droopy left side after injections. Lost smile. Eye dry.

MVD Comments: Update as of 08/2007: Feeding tube for 4 weeks, lost 20 pounds, dizziness, left side facial paralysis.

Robert McQuade

London, England (United Kingdom)
Left
2002
No

No






Joeli McQuaid-Robert

Monson, MA (USA)
Right
2008
No

No






Kara McSweeney

Quincy , MA (USA)
Right
2007
No

No






Bodh Raj Mehra

Mumbai, (India)
Left
2003
No

No





Click here to see my "Personal HFS History".
Cindy Melby

ND (USA)
Left
2003
No

No






Laura Mesmer

Rincon, GA (USA)
Right
2008
No

No






Laura Micewski

Eliot, ME (USA)
Both
2000
No

No






Anna Michael
Inactive Memb.
Port Orange, FL (USA)
Right
1989
Yes
No
Yes
2
10/18/05
Dr. Anthony Asher
Charlotte, NC (USA)
Yes

Botox Comments: I used Botox for at least 2 years. It worked well at first, then gradually lost effectiveness. But I would have stopped using it anyway because I began to look like a stroke victim as the right side of my face began to sag. My right eyelid would not close. My eye no longer produced tears. I had to carry eye drops with me at all times. I had to close the eye with my finger to keep it lubricated. I stopped Botox over 2 years ago. Forunately the side effects gradually faded after about a year.

MVD Comments: As of 10/22/05 - I am very happy to announce that I am now "SPASM FREE"! I felt a couple of tiny flutters in my eyelid while I was in ICU on Wednesday, but since then, my face has been calm and serene, moving only when I want it to.(MVD #1 on 07/07/05 also with Dr. Asher)

Debbie Michalik

Canton, MI (USA)
Left
1999
No

No






Sheila Miehm

Springfield, MA (USA)
Left
2002
No

Yes
2
06/04/09
Drs. Peter J. Jannetta & Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

MVD Comments: Update as of 10/01/09 - I have returned to work, driving etc, hope the visual issues will resolve with continued therapy. (MVD #1 with Dr. Kamal Kalia on 02/06/08)
Sherry Miller

Jackson, TN (USA)
Right
2004
Yes
No
No





Botox Comments:
Tammy Millikan

Beaver, OK (USA)
Right
1998
Yes
No
No





Botox Comments: Botox gave some relief but caused other effects in my face that were as bad as the spasms.
Betty Mitchell

Garland , TX (USA)
Right
1970
Yes
No
No





Botox Comments: I was very happy with the results of the first treatment. The injection was around the eye only. I experience slight drooping of the eyelid, but the spasms did not come back for six months. With the second treatment I was injected around the right eye and the cheek as well. The side effects was unpleasant. The eye drooped for at least three weeks, and my smile was lopsided. Both eyes became very dry and red and this lasted at least a week. I will not get Botox again.
Mandy Miller

Satsuma, AL (USA)
Right
2007
No

No






Terry Mizrahi

New York NY (USA)
Left
2000
Yes
No
Yes
1
02/11/09
Dr. Raj Shrivastava
New York City, NY (USA)
Yes

Botox Comments: Botox for 6 years. Worked reasonably well but made eye asymmetical. Pulling/spasm got worse over time.

MVD Comments: Update as of 02/17/09 - So far so good thank God. It's 6 days; headache continuing; hard to sleep; little nausea now. Energy coming back but understandably somewhat tired. Doctors sees it in a good light (so far). Post MVD CAT SCAN was good.

Jane Moldaschel

Windom, MN (USA)
Left
2007
Yes
Yes
No





Botox Comments: Update as of 08/13/09 - Each of 3 treatments with Botox injections have caused drooping, paralysis, and asymmetrical facial expressions despite lowering the dose injected each time. After each injection, I continued to experience lighter twitches for about 7 weeks with spasms gradually returning soon after. I called my neurologist today to express my disappointment with Botox and discuss other possible treatments including MVD. I have an appointment for Botox injections again next month and am considering canceling but feel hopelessly lost as to what treatment to pursue next.
Marlene Montgomery

Gilbert, AZ (USA)
Left
1985
Yes
No
Yes
2
05/15/08
Dr. Peter J. Jannetta
Pittsburgh, PA (USA) Seattle, WA
Yes

Botox Comments: tried botox for about 2 1/2 years. got the shots every three months or so; sometimes I felt like they deadened the spasms but they also often deadened the whole side of my face, causing a lopsided smile and just a strangeness, an asymmetry that was almost as bad as the ticking...except the odd look was constant while the botox was working. One day I woke up with a wrinkle (on the left side only) from the side of my nose down to my chin; it's getting deeper all the time. Now, I don't know if it's just that creep, father time, but I blame the botox for my wrinkle. I stopped with the botox injections when I made the decision to have surgery, and haven't and won't resume botox treatment.

MVD Comments - MVD #2 Update as of 05/22/08 - No words can express the respect and gratitude I have for Drs Jannetta and Sekula. Briefly, the left side of my face and head are sore so is my neck and I have fullness in my left ear. The volume in my left ear is about half of my right, and I hear my voice echo when I talk. I think I’ll recover the hearing over time, and know the soreness will go away. Dr. Sekula said that once inside the problem was obvious, a vein bundled with and on the bottom side of the 7th nerve. He took a micro-hook, tugged on the vein, it broke, and my spasms stopped. The vein was too small to cauterize so it was pinched off. The surgery was an ordeal, but I’m recovering and couldn’t be happier. Just one note of interest, over the years I developed lots of facial weakness and a deep line from my nose to the corner of my mouth then down into my chin on my hfs side. I didn’t expect any change (except worsening with age), but that deep line is almost gone now; the facial weakness is improving – it’s amazing. (MVD #1 with Dr. Kris A. Smith on 08/09/99).
For details, click here to see my "MVD Diary.

Darrell Monie
Former Memb.
NC (USA)




Yes
2
01/21/03
Drs. Kassam & Horowitz
Pittsburgh, PA (USA)
Yes

Post MVD Conditions - As of two days post-op, experiencing dizziness, some facial weakness, diminished hearing, BUT no spasms. Hoping the side effects will decrease with time. During the 1st MVD on 01/15/03, also with Drs. Kassam & Horowitz, the hearing nerve did not rebound back as expected so the doctors closed up.
Julia Monroe

Kansas City, MO (USA)
Left
1998
No

Yes
1
01/26/05
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

MVD Comments: Highly recommend Dr Kassam and UPMC. Particularly impressed with all of the post-op staff and their familiarity with the recovery from the procedure.
Ann Moore

Mission Viejo, CA (USA)
Right
2002
No

Yes
1
01/26/04
Dr. Hrayr K. Shahinian
Los Angeles, CA (USA)
Yes

MVD Comments: (As of 02/05/04) The auditory nerve was fine at the end of surgery but I have had some swelling in the brain and have temporarily lost quite a bit of hearing on that side. We are hoping and praying that it will return. Because of this, I have some dizziness but I start therapy on 02/06/04 to attempt to overcome it.
Lois Moore
Inactive Memb.
Arley, AL (USA)
Right
1994
Yes
No
Yes
1
03/14/05
Dr. Winfield Fisher, III
Birmingham AL (USA)
No

Botox Comments: Frozen face, especially mouth. Big sag at mouth. The spasms didn't cause that, the Botox did. People asked if I'd had a stroke (so did a doctor). Unable to smile. Couldn't eat a sandwich. Had trouble getting right side of mouth open enouth to use a fork. Never, never will I use it again.

MVD Comments:
Marty Moore

Las Vegas, NV (USA)
Right
1996
Yes
No
Yes
1
03/01/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox subdued spasms but subsequent droop and loss of facial control is unacceptable.

MVD Comments: Update as of 07/04/08 - I lost most of my hearing in my right ear and I still have some weird sensitivity around my incision site, but I would do it all again in a heartbeat to get rid of the spasms. My calm face, self esteem, basically having my life back and most importantly, having my smile back, are much more important to me than being able to hear 100%.

Peggy Moore
Former Memb.
Windsor, CA (USA)
Left
1988
Yes
No
Yes
1
12/01/99
Dr. Stephen Nutik
Redwood City, CA (USA)
Yes

Botox Comments: Had pretty good effect with first 1 1/2 years of shots from an experienced neurologist, but the effectiveness started to wane. Then had to switch to a different neurologist who was new with Botox and gave me too much. That's when I decided to do the MVD.

Post MVD Conditions - None
Rosemary Moore

Bacliff, TX (USA)
Left
2001
Yes
No
Yes
1
05/15/08
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: Update as of 06/12/08 – My spasms are gone, thank God! I've lost my hearing in my left ear and with it my sense of balance and my eyes are crossed, supposedly all problems will resolve with time except the hearing which is gone forever. I feel good but the balance and vision thing is a nuisance. I'm at least 50% up to par with strength and stamina and to date I haven't lost my sense of humor so I'm doing pretty darn good. Regardless of my current problems I would still have had the surgery.
For details, click here to see my "MVD Diary.
Sonia Moore

Lubbock, TX (USA)
Left
2005
Yes
No
Yes
1
09/27/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Droopy eye & lip. I looked like I had suffered a stroke for about a month after the injection. However, after the first month the Botox held the spasms for a couple of months.

MVD Comments: Update as of 01/22/08 - I’m officially “SPASM FREE”. I told Jack last week about being free of the spasms but I was a little hesitant to make it official because I was afraid they would return. However, I feel safe in saying that I no longer have the spasms and I’m enjoying wearing eye makeup again! I even tested it out with my husband and my children to see if any of them could see the spasms and none of them could. I also want to continue to be a part of such a wonderful organization to encourage others who are suffering with spasms because I know the ordeal that people go through with this disorder. I’m just so grateful to know that there is a chance for a cure rather than having to suffer with the spasms and that the success rate is so high. Again, I thank each and everyone for your support and I’m so happy to say that nearly four months after the procedure I am able to smile again. Please know that I can be of any assistance to you in any way, please do not hesitate to ask!

For details, click here to see my "MVD Diary".

Gail Moran

Glen Cove, NY (USA)
Left
1987
Yes
Yes
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Ilona More

Scottsdale, AZ (USA)
Right

Yes
Yes
No





Botox Comments: Botox for 4 years no side effects, little help.
Jennifer Morgan

Bossier City, LA (USA)
Right
2006
No

No






Dan Morkert

Tempe, AZ (USA)
Left
2005
No

No





Click here to see my "Personal HFS History".
Colleen Morse

Mounds View, MN (USA)
Left
1990
No

Yes
1
04/20/00
Dr. Gaylan Rockswold
Minneapolis, MN (USA)
Yes

MVD Comments: My MVD was a complete success. I was completely spasm free within a couple of months after the surgery. I would do it again in a heartbeat.
Steve Morse

Atlanta, GA (USA)
Right
1998
Yes
Yes
Yes
1
01/29/04
Dr. Christopher Clare
Atlanta, GA (USA)
No

Botox Comments: I have been receiving injections since 1999, I think. The effects have not lasted very long recently, to the point where they basically only mildly helped for a month or so the last two times.

MVD Comments:
Michele Morton

Courtenay, British Columbia (Canada)
Right
2008
No

No





Update as of 10/11/09 - My spasms have markable decrease over the summer without intervention. I have been almost afraid to say anything in fear they will return with a vengeance which I know they will as this did happen to me for a few months once before.
Edna Moskaira

Union City, CA (USA)
Left
2002
Yes
No
Yes
1
08/16/07
Dr. Federico Castro-Moure
Oakland, CA (USA)
Yes

Botox Comments: Seemed to reduce the frequency of the spasm but not much.

MVD Comments: Update as of 09/10/07 - It's been 25 days now since surgery and I am “SPASM FREE” from day 1 after the surgery. Dr. Castro-Moure and team were all very compassionate and caring. I stayed 4 days in the hospital because I was nauseated for 2 days after the surgery, due to the effect of the anesthesia and the pain reliever. Other than that everything was perfect. However, after two weeks, I experienced fullness in my left ear and buzzing. I got so worried and made an appointment and I was seen by Dr. Patel on 09/07/07. Dr. Patel found that I have fluid in my left ear, prescribed Sudafed. It is working well as of this moment. Hopefully, things will normalize.

Wendy Mosslander

Bellaire, OH (USA)
Left
1997
No

Yes
1
03/15/98
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

MVD Comments: I had MVD for Trigeminal Neuralgia without relief of pain.
Lana Mountford

Bellingham, WA (USA)
Right
2007
No

No






Dora Mubs

Natick, MS (USA)
Right
2008
No

No






Jason Musser
Former Memb.
Clermont, FL (USA)
Right
2001
No

Yes
1
10/12/04
Dr. Max B. Medary
Orlando, Florida (USA)
Yes

MVD Comments:
Vivian Narup

Collinsville, IL (USA)
Right
2004
No

No






Michelle Nelimark

Queen Creek, AZ (USA)
Right
1994
Yes
No
Yes
1
10/19/09
Dr. Robert Spetzler
Phoenix, AZ (USA)
Yes

Botox Comments: Have used Botox for 10 years. Last set of shots was in June of 2009, but decided to stop as they seem to be less effective and am looking into having the MVD procedure.

MVD Comments: Update as of 10/31/09 - I am happy to report I am spasm free!!! I had a few twitches about a week post-op that were completely different than I had experienced before and they fortunately went away with rest. My only concern now is the length of time it's taking me to recover. I went to have my stitches removed 2 days ago and ended up getting re-stitched because the wound had not healed yet. I also passed out at that visit when he was taking the stitch out from my back (from the lumbar drain). We think it was due to the pain experienced during the re-stitching since I didn't have anything to numb me up first. The other complication (or annoyance) I have is hearing loss in my right ear (the MVD side). I'm hoping that will go away soon as my job requires me to listen. (I do medical transcription).

Imad Nemer

Santa Ana, CA (USA)
Left
2001
No

No






Roz Nerdahl
Former Memb.
Ogden, UT (USA)
Right
1999
No

Yes
1
10/07/02
Dr. Ronald I. Apfelbaum
Salt Lake City, Utah (USA)
Yes

MVD Comments: I came home 10/10/02 and am so excited to announce that I am SPASPM FREE. Not even the slightest twitch. Had I known it would have went this well, I would have done it a year ago. Dr. Apfelbaum said when he lifted the blood vessels off of the facial nerve, he could actually see indentations on the nerve where they had been rubbing. I can't begin to describe how wonderful it feels to be spasm free for the first time in three years. I'm just suffering a little bit of nausia and a small headache. Like Dr. Apfelbaum said....this will pass; however, the face is now permanent (spasm free).
Fred Neri

Naples, FL (USA)
Left
2005
No

Yes
1
01/09/08
Drs. Peter J. Jannetta & Ray Sekula
Pittsburgh, PA (USA)
Yes

MVD Comments: Lose of lower range of sound and volume.
Mary Neufeld

Schenectady, NY (USA)
Right
2005
Yes
No
No





Botox Comments:
Joyce Newman

Virginia Beach, VA (USA)
Right
1992
No

No






Frances Ng

(Singapore)
Right
1976
Yes
No
Yes
1
07/27/06
Dr. Peter Hwang
(Singapore)
Yes

Botox Comments: Tried in 1997-1998. Quite effective but smile was still slightly crooked. Stopped in 1999 as I got married & planned to have kids. Did not try it again & thought I'd just live with HFS.

MVD Comments: Click here to see my "MVD Diary".

Jimmy Ng See Soon

Bentong (Malaysia)
Right
2004
Yes
Yes
No





Botox Comments: First tried 12 units round the right eye and one month later 25 units on the eye and the side of the face and mouth. Can still feel the twitching and the hammering sound in my right ear is still there.
Billy Nguyen

Santa Ana, CA (USA)
Left
2003
No

No






Thinh Nguyen

Saigon (Vietnam)
Left
1990
Yes
No
Yes
1
07/19/01
Dr. Peter J. Jannetta
Pittsburgh, PA
No

Botox Comments: Some what effective but created double-vision and weak facial muscles.

Post MVD Conditions - I still have what they called residual spasm and it's slowly getting worse since my sugery. Two and a half months after my surgery, my spasms are back to about 80% of the level before the surgery. It was about 15% immediately after the surgery.
Theresa Nilsen

Jackson, NJ (USA)
Right
2009
No

Yes
1
05/04/09
Drs. Peter J. Jannetta & Ray Sekula
Pittsburgh, PA (USA)
Yes

MVD Comments: The Doctors and staff I had were great. I went to Doctors for eight years and they didn't know what was wrong with me. I found your site and learned about the Doctors and they were great.
Linda Nobles

Ashville, NY (USA)
Both
2002
Yes
Yes
No





Botox Comments: Only started in Dec 2007. Too much in mouth area, lost control of upper lip and no longer able to smile.
Sue Nofi

Ansonia, CT (USA)
Left
1976
No

Yes
3
10/02/02
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary". (2nd MVD on 04/18/85 also with Dr. Jannetta)

Denice Noice

Buena Park. CA (USA)
Right
1996
Yes
No
Yes
1
12/11/03
Dr. Choi
Anaheim CA (USA)
No

Botox Comments: Botox reduced severity of symptoms but did not totally eliminate them. I have had no side effects. Gradually became less effective

MVD Comments: Currently under a new doctors care, Dr Bill Mastrodimos in the San Diego facility, discussing the possibility of another MVD.
Barbara Northam

Diamond Bar, CA (USA)
Left
1993
Yes
No
Yes
1
04/24/08
Drs. Peter J. Jannetta and Raymond Sekula, Jr.
Pittsburgh, PA (USA)


Botox Comments: The first neurologist to inject me with Botox did not do it properly. My current neurologist is excellent, careful to inject me only where needed and I don't find the procedure terribly painful. However, I'm unable to use the left side of my mouth properly, drinking from a cup is sometimes difficult, and lately I find I cannot always form words properly.

MVD Comments: Update as of 05/04/08 - I am “Spasm Free”, I can hardly say it. My spasms began 14 years ago and 22 months ago I decided to try MVD surgery. During those months, I've battled my medical provider and my former insurance carrier, ultimately changing my insurance carrier so that I could come to Pittsburgh, to the Master. I'm so glad I traveled all the way from California to Pittsburgh, to Drs. Jannetta and Sekula. Everyone here, from Ann and the office personnel to the hospital staff has been so very kind and caring, and very professional. As for Drs. Jannetta & Sekula, words are inadequate to express my gratitude as well as that of my family. Now I can smile at my grandchildren.
Viracbot V Noung

Riverdale, GA (USA)
Left
1997
No

No






Laura Nuessle

Lebanon, TN (USA)
Right
1997
Yes
No
Yes
1
10/27/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: HATED it.... my left eye would not shut and even after a year still tears and is easily irritated. My smile became very crooked and drooled...never again!!!

MVD Comments: Update as of 09/21/07 - For those of you out there still considering an MVD or still having spasms after surgery take heart and read on. It has been almost 2 years since my MVD with Dr. Jannetta and I am totally free of spasms. I have healed so well that I have none of the facial weakness that Dr Jannetta thought would remain. My smile is balanced and any "funny faces" I make, I am totally in control of !!!!!

The healing path was long. Six months after surgery the only improvement was that my HFS side eye no longer watered. Ten months after surgery I thought it was somewhat better but my eyelid kept sticking open whenever I blinked for a few seconds before it would close... THAT was annoying, but only lasted a couple days. But then one year after surgery the spasms seemed to just fade away and 18 months after the surgery I was ready to say I was "SPASM FREE". There were still occasional funny sensations but NO spasms or twitches. Now almost 2 years after surgery I am free of any spasms, and have no ill effects from the surgery. I thank Dr. Jannetta every day and am so grateful for this group for helping me find my way back to my smile.

Lorraine Nygren

Golden, British Columbia (Canada)
Right
2002
Yes
Yes
No





Botox Comments: Started on 11/21/06..
Steve O'Connor

Toronto, Ontario (Canada)
Left
2000
No

No






Ryan Odinak
Former Memb.
Fairfield, CT (USA)
Right
1986
Yes

Yes
1
11/07/02
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes


Kathy Odom

Conyers, GA (USA)
Left
1989
Yes
Yes
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Jack O'Donnell

Sarasota, FL (USA)
Left
1997
Yes
No
Yes
2
01/23/03
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".

Click here to see my "Personal HFS History".

MVD Comments: For details, click here to see my "MVD Diary's #1 & #2". (MVD #1 also with Dr. Jannetta 10/18/00 - SPASM FREE for 18 months and then spasms returned).

Nancy O'Donnell

Ringwood, NJ (USA)
Left
1997
Yes
Yes
No





Botox Comments: I only get a very small amount (3 shots)in the muscle under my eye (orbicularis oris). Somewhat effective for that area, but the rest of my face still spasms.
Kay Ohana

Bigfork, MT (USA)
Right
2005
No

Yes
1
10/25/07
Dr. J. Paul Muizelaar
Sacramento, CA (USA)
Yes

MVD Comments: Update as of 11/18/07 - My surgery was a 100% success with some wonderful side benefits. All the spasms are GONE. Dr. Muizelaar found the tortuous artery and a blood vessel both pressing on the nerves and lifted them away. Other than the usual post surgical recovery and pain I am in excellent condition.
Linda Okonski

San Diego, CA (USA)
Right
2004
Yes
No
Yes
1
03/26/08
Dr. John Alksne
La Jolla, CA (USA).
No

Botox Comments: In the early stages, the Botox helped, but now I'm starting to experience my eyelid drooping and it always feels like something is in my eye....starting to wonder about continuing injections.

MVD Comments: Update as of 06/19/08 – My MVD was on 03/26/08 with Dr. Alksne. I ended up with facial weakness and eye problems that resulted in Bell's Phenomenon. UCSD ran out of hospital beds and I spent 12 hours in recovery, it was pretty awful. When a bed opened up it was in ICU, which turned into a blessing. It was quiet, dark as I wanted it and I had individual care. For the surgery itself, my surgeon was surprised at the size of the blood vessel, which he cauterized. There were problems with the EMG machine. During surgery my 6th nerve was out of the surgeons field of vision and I ended up with another problem. I was treated by an Opthamologist while in the hospital and treatment continues continue to this day. The facial weakness has improved but there's still numbness around my mouth which makes it hard to eat properly, and liquid is of course through a straw. Before my surgery, I was so sure of my decision and I'm still not at a place of saying it was worth yet, just not yet. But I believe we are so tired of living with a condition that just wears us out physically and mentally. We end up living with HFS 24/7 and I'd had enough. I'm almost three months post-op and know I still need to be patient and give it more time, because time is all I have. I believe I could be spasm free but there's still numbness, so I can’t be sure. I can't drive right now, so I'm on disability from work.

Emine Oktem

Ankara (Turkey)
Right
2003
Yes
No
No





Botox Comments:
Susan Ona

Boynton Beach, FL (USA)
Left
1994
No

No






Evie Olszweski

Newark, DE (USA)
Right
1999
Yes
No
Yes
1
09/11/00
Dr. Yakov Koffman
Newark, DE (USA)
No

Botox Comments: did not like the effects of it.

MVD Comments:Still having facial and eye twitches every single day. Sometimes I feel like having another MVD but I am scared to death to do it.

Dasa Orszulikova

London (United Kingdom)
Left
2005
Yes
Yes
No





Botox Comments: Botox third treatment. Depending on the doctor administering, but have a relief with some unsightly effects. First Botox I had 6 injections eye, face, mouth worked very well no flattering of the eye lid and most strong spasms gone. Second Botox by different doctor 4 injections around my eye only very limited effect. Third treatment I had 6 injections eye, mouth much better but spasms still present. I have no side effects. It stings a little when administering but gone very quickly.
Olympia Ortega-gregory

Richmond, CA (USA)
Left
2004
Yes
No
Yes
1
12/07/08
Dr. Nickolas Barbaro
San Francisco, CA (USA) Pittsburgh, PA (USA)
Yes

Botox Comments: Botox treatments allowed me to continue working, but did disfigure my face. I had a wide open eye and an a-symmetrical smile. I couldn't lift the corner of the mouth on the side where I had had the injections.

MVD Comments:

David Ortiz

Guaynabo (Puerto Rico)
Right
1998
Yes
No
Yes
1
05/11/05
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Paralyzed the right side of face. Mouth drooped; would bite my tongue constently.

MVD Comments: Update as of 6/1/05, I truly feel blessed knowing that HFSA members helped me through all this process. I will always be grateful.

Bill Osborn

Indianapolis, IN (USA)


Guaynabo (Puerto Rico)
Left/FONT>
2006
Yes
No
Yes
1
11/19/09
Dr. Aaron Cohen-Gadol-Gadol
Indianapolis, IN (USA)
Yes

I have used Botox for close to 3 years approximately every 4-6 months. Varying temporary help, but very painful injections and in one case paralized the left side of my mouth for a couple of months.

MVD Comments: Update as of 01/13/10 - While I do have a very slight and only occasional residual sensation in my left cheek, I consider myself 90-95% spasm free at this time.

Steve Ostrow
Former Memb.
Berea, OH (USA)
Left
1999
No

Yes
1
03/28/01
Drs. Kassam & Horowitz
Pittsburgh, PA (USA)
Yes

Post MVD Conditions - No continuing complications.
Harry Otto

Jefferson City, MO (USA)
Left
1987
Yes
No
Yes
1
06/09/99
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: dumb idea.

MVD Comments: Surgery induced minor Bell's Palsy.

Janet Ottone

Walnut Creek, CA (USA)
Left
1996
No

No






Christophe Oustalet

Montpellier (France)
Right
1998
Yes
No
Yes
1
10/10/06
Dr. Jacques Magnan
Marseilles (France)
Yes

Botox Comments: Efficient during 4 years

MVD Comments: Became spasm free 5 months after MVD.

Delores Overpeck

Avon, IN (USA)
Right
1991
Yes
No
Yes
1
04/11/01
Drs. Kassam & Horowitz
Pittsburgh, PA (USA)
Yes

Botox Comments: Blurred vision, R side facial weakness. I still had movement (it pulled my face)

Post MVD Conditions - I have a serious balance problems, and have had several falls, and many near serious falls I wasn't able to stand following surgery, and I now need to use a cane. Drs arn't sure but think that I had a stroke, or there is an accumulation of fluid.
Pauline Pace

Austin, TX (USA)
Left
1992
Yes
Yes
No





Botox Comments: Started botox 2yrs. ago. It worked great at first. The muscle has become stronger and more involved, sometimes going into my neck. This has made it very hard to get the right dosage with out causing facail drooping or looking paralyzed.
Andi Owens

Atlanta, GA (USA)
Left
1999
Yes
No
Yes
1
11/21/01
Dr. Joseph C.T. Chen
San Diego, CA (USA)
No

Botox Comments: I felt they only prolonged the decision to have the surgery which I learned of from the opthamologist that administered the shots.

MVD Comments: Spasms have intensified in strength, frequency and duration. Would have a 2nd surgery in a second if I could afford it & get referral outside of Kaiser. (12/15/03)

Pauline Pace

Austin, TX (USA)
Left
1992
Yes
Yes
No





Botox Comments: Started botox 2yrs. ago. It worked great at first. The muscle has become stronger and more involved, sometimes going into my neck. This has made it very hard to get the right dosage with out causing facail drooping or looking paralyzed.
Mina Pacella
Inactive Memb.
New Castle, PA (USA)
Left
1999
Yes
No
Yes
1
04/29/09
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA)
Yes

Botox Comments: Botox injections caused me to look like I had a stroke. They only controlled the spasms for approxamately two months.

MVD Comments: Update as of 10/31/09 - It took me nine years to find a Doctor who would do this operation for me. It has completely changed my life for the better. I found Dr. Sekula on your website. Thank you for being there for me.

Bob Palmer

Langley , British Columbia (Canada)
Left
2002
Yes
No
Yes
1
01/29/08
Dr. Anthony Kaufmann
Winnipeg (Canada)
No

Botox Comments: Impractical due to the severity of the condition. For milder cases of the condition I think it would work very well.

MVD Comments: Update as of 03/17/08 - Still not spasm free but getting there. Great improvement so far.

Kathy Palmer
Inactive Memb.
Quincy, MA (USA)
Righr
2002
Yes
No
Yes
2
09/12/02
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: Did not work - right lip droopy

MVD Comments: Going to have MVD #3 in Fall 2003 with Dr. Peter J. Jannetta. (MVD #2 was also with Dr. Peter J. Jannetta, Allegheny General Hospital on 09/12/02, and MVD #1 was with Dr. Fred G. Barker, Mass General Hospital, Boston, MA.

Chuck Palumbo
Former Memb.
Greenfield Twp, PA (USA)
Left
2003
No

Yes
1
10/27/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No
MVD Comments: As of 11/03/05, pain, stiffness, currently can't hear out of left ear, spasms continue.
Tassos Panas

Furlong, PA (USA)
Right
1999
Yes
No
Yes
1
01/11/06
Dr. Amin Kassam
Pittsburgh, PA (USA)
No

Botox Comments: Botox worked well for me but it is not a permenent solution.

MVD Comments: Was spasm free for 1 year following MVD before they returned. For details, click here to see my "MVD Diary".

Evelyne Panny

Brussels (Belgium)
Left
2008
No

Yes
1
11/03/08
Dr. Luc De Waele
Gent (Belgium)
No

MVD Comments: Update as of 11/09/09 - MVD was a little complex due to the location of the artery-nerve conflict the surgeon had to cope with. No hearing loss or facial palsy, which I feared the most. A year after surgery the spasms have not gone away. I felt very depressed and miserable because they are still present but now I am better. I nevertheless lose hope to be spasm free one day and it is hard to accept. For the moment I am not considering the possibility of having a second MVD (I live in a small country, Belgium Europe, and good neurosurgeons are rare, I am so afraid of hearing risks, etc.).
Phyliss Paone
Former Memb.
Greenfield Twp, PA (USA)
Left
2004
No

Yes
1
01/12/05
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes
MVD Comments: For details, click here to see my "MVD Diary".
Nick Pappas
Inactive Memb.
Noblesville, IN (USA)
Left
2001
Yes
No
Yes
1
02/23/09
Dr. Aaron Cohen
Indianapolis, IN (USA)
Yes

Botox Comments: No longer provided desired effect.

MVD Comments:

Eileen Pardini

Sun Lakes, AZ (USA)
Right
2004
Yes
No
Yes
1
09/03/08
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Effective for a couple years.Side effects became worse than the spasms. My eye would not blink and became very dry. I would bite my lip, sometimes the upper and sometimes the lower. Could not smile on that side of my face.

MVD Comments: Update as of 09/17/08 - I came out of surgery completely spasm free with no hearing loss.

Amy Paredes

Mineral Wells, TX (USA)
Right
1999
No

No






Marty Paris

Edmonton, Alberta (Canada)
Left
1994
Yes
Yes
No





Botox Comments: Often helpful.
Steven Parsons

Brisbane (Australia)
Right
2003
Yes
Yes
No





Botox Comments: Botox - slows it down or stops it for a while.I believe it expediated the mouth twitching.
John Passalacqua

Charlotte, NC (USA)
Right
2008
Yes
No
No





Botox Comments: Botox Injections - did not work well - worked for about a week and then I would get a droopy eye lid for about 2 weeks and then the twitch would return.
Don Patterson

Jeffersonville, IN (USA)
Left
2002
Yes
No
Yes
1
07/18/06
Dr. Todd Vitaz
Louisville, KY (USA)
Yes

Botox Comments: Botox injections - 4 times over the past 2 years. The first and second time the twitching stopped for 3-4 months. The 3rd treatment didn't stop the twitching, so I went back and had the injections "boosted" with more botox. This resulted in drooping eyelid, mouth, etc. I most recently had botox injections 1 month ago. It may have calmed down the spasms a bit, but has not stopped them by any means.

MVD Comments: As of 07/31/06, still battling the dizziness and the full ear thing, but fortunately, NO SPASMS!

Wilson Patton

Alpharetta, GA (USA)
Left
2001
No

No






Caras Payne

Herndon, VA (USA)
Right
2000
No

Yes
2
04/20/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes
MVD Comments: Update as of 12/02/08 – I have a very mild flutter and it feels like I have an eyelash stuck in my eye. This is a big improvement from the "tonus" like twitching I had in that area for a full 2 months. About 3 weeks ago I began a daily double dose of the "Go Greens" drink mix that I read about in our HFSA group forum. If I remember correctly, at least 2 of our members have used this drink mix supplement with much success in bringing their spasms into remission. For 2 weeks I was completely twitch, tic and flutter free!! Then over the Thanksgiving holiday I neglected my daily double dose of "Go Greens" and by Monday I felt a mild eyelid flutter developing. Not sure if what I'm currently experiencing is HFS related or not, only time will tell. Never been really prone to muscle twitches until HFS came into my life years ago. (MVD #1 also with Dr. Jannetta on 07/21/05).
Jon Ronel Pecho

Tanauan (Philippines)
Left
2006
No

No






Andrew Peck

Chicago, IL (USA)
Right
2005
Yes
No
Yes
1
01/14/08
Dr. Gail Rosseau
Chicago, IL (USA)
Yes

Botox Comments: I tried Botox on 3 seperate occasions. It really didn't do anything but make my smile worse for a few months. I still kept getting the spasms so this did not solve anything.

MVD Comments: Update as of 01/21/07 - I just had my MVD a week ago. I still have some spasms but nothing like before the surgery. I was told that they should continue to diminish over the next few months and go away. I've had very little pain and my recovery is going great.

Elaine Pehkonen
Former Memb.
Dallas, TX (USA)
Right
1990
No

Yes
2
04/11/02
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Post MVD Conditions - No complications. However, twitching began very slowly during 4-weeks of recovery. Now after 4 years of increasing intensity, I'm ready to try again.

MVD Comments: (1st MVD 02/11/98 by Dr. Finn, Dallas, TX).

Kaye Peloquin

Kaye Peloquin
Right
1998
No

No






Omaira Pena

New York, NY (USA)
Right
2004
Yes
No
Yes
1
12/15/08
Dr. Chandranath Sen
New York, NY (USA). Chicago, IL (USA)
Yes

MVD Comments: Update as of 02/14/09 - I’ve been spasm free since my MVD. While I was in the hospital I received excellent care. I can't say enough about Dr. Sen and the Department of Neurosurgery. Everything, absolutely everything was just EXCELLENT. Besides being a very well know neurosurgeon, Dr. Sen is very nice, warm and kind. He was always willing to listen and answer any question I had, with a big smile.
Diana Penix

Virginia Beach, VA (USA)
Left
2002
No

No






Vanessa Perruzzi

Bridgton, ME (USA)
Left
2004
No

No






Rick Peterson

Ozark. MO (USA)
Left
2005
Yes
No
Yes/FONT>
1
08/07/09
Dr. Joshua Doweling
St Louis, MO (USA)
No

Botox Comments: Botox either left my face drooping or unable to close my eye and usually did not stop the spasms.

MVD Comments: Update as of 08/09/09 - The surgery went ok, unfortunately the spasms haven't decreased at all and the surgeon isn't sure if they will.

Susan Peterson
Inactive Memb.
West Fargo, ND (USA)
Left
1982
Yes
Yes
Yes
2
01/15/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
No

Botox Comments: Only worked first few times; experience 2-3 weeks of side effects and no marked improvement in spasms.

MVD Comments: Update as of 03/16/04 - Second surgery, January 15, 2004, and still not spasm-free. Complications from surgery were bacterial infections from the titanium mesh (2 wks after surgery); have had 2 surgeries since to clean out the infection and remove the titanium mesh (which was harboring the infection). I am presently on infusion therapy at home (twice a day). Spasm-free for 20 years after MVD #1 (1982), although I lost the hearing in my left ear completely from the first surgery.

Gilpatrick Peyton

Nocona, TX (USA)
Right
2006
Yes
No
Yes
1
12/18/08
Dr. Jonathon White
Dallas, TX (USA)
Yes

Botox Comments: The twitching subsided, but my eye drooped badly. I have also lost some mobility around my top lip which alters my smile.

MVD Comments: Update as of 02/11/09 – The surgery went very well. My recovery had been going well, but I had a stomach virus on Christmas Eve. A quick trip to the emergency room found me de-hydrated and ready for more recovery. However, on the ninth day post-op, the right (MVD) side of my face became paralyzed. The neurosurgeon covering for my doctor prescribed steroids, an anti-viral, and another MRI. The MRI did not show any abnormalities, and my eye now blinks and I can move my lips a little, so maybe this is part of a normal healing. I have read in some member diaries that they went through a temporary paralysis. I feel wonderful otherwise, only very few flutters around my eye (before the paralysis). I am now overjoyed to say that I have not had any spasms in weeks. The facial weakness has improved considerably as well. I praise God for His mercy and I thank Dr. White for his skills.

Denise Pfeiffer

Adelaide (Australia)
Left
1998
Yes
Yes
No





Botox Comments: Botox works better some treatments than other. My neurologist changes the amount she gives me and I can tell when she has reduced the amount - not as affective. Have had drooping mouth - eye dryness, lid drooping.
Paulo Pham
Inactive Memb.
Amarillo, TX (USA) Cumming, GA (USA)
Right
2000
Yes
No
Yes
1
04/07/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Droop eyelid.

MVD Comments:

David Phillips

Marion, IL (USA)
Left
2005
No

No






Varghese Philips

Dubai (United Arab Emirates)
Left
2003
Yes
No
No





Botox Comments: Tried once , halted spasm for short while , but resulted in lop sided smile and permanent paralysis of left cheeek. Feel terrible in front of people, losing confidence and feeling isolated.
Wayne M. Phillips
Former Memb.
Granbury, TX (USA)
Left
1985
Yes
No
Yes
1
02/13/01
Dr. Richard Jackson
Dallas, TX (USA)
Yes

Botox Comments: Began Botox injections in 1992. Received every three months until August 2000. Injections always left face numb and sagging, results were always temporary.

Post MVD Conditions - Deafness & facial paralysis (HFS side), dizziness.
Jeff Pierce

Cedar Park, TX (USA)
Left
2001
No
No
Yes
1
09/24/03
Dr. Hrayr K. Shahinian
Los Angeles, CA (USA)
No


Cynthia Pineda

Frisco, TX (USA)
Left
1998
Yes
No
Yes
1
11/17/05
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: It's worked great for my eye, but now that it has progress to my mouth Botox doen't seem to work. I don't know if I should contine use of Botox or have surgery.

MVD Comments:

Yuda Pinkhof

Tel-Aviv (Israel)
Left
2004
Yes
No
Yes
1
02/06/08
Dr. Amin Kassam
UPMC, Pittsburgh, PA (USA)
Yes

Botox Comments: 1 round of Botox (10 units) around left eye. Believe I will stop it after reading the HFSA web pages.

MVD Comments: Update as of 10/07/09 – I am still spasm free, but, totally deaf in the MVD side with TONS of tinnitus. Balance problems are nearly gone. Still an issue when have to stand on one leg - e.g., when getting dressed. Hearing loss somehow also effects the other ear, perhaps it still improves (the overall hearing, not the dead ear which will never improve) very little. Considered BAHA but decided against it for now. Recommendation: Check the rate of complications, not only the rate of Spasm Free success when selecting the surgeon !! Let him go in twice or more, but let him be very careful and save your hearing, facial nerves etc.

For details, click here to see my "MVD Diary.

Jack Pitcher

Sussex, New Brunswick (Canada)
Right
1988
Yes
No
Yes
1
05/08/02
Dr. Anthony Kaufmann
Winnipeg, Manitoba (Canada)
Yes

Botox Comments: Some slight bruising, drooping mouth, bite my lip, speech slurred, injections painful. Makes it possible to sleep better therefore worth it.

MVD comments - As of 10/13/04, It has been 2 1/2 years since my MVD with Dr. Kaufmann in Winnipeg. After the surgery I was about 85% better. I expected any further improvement would be complete within a year. My condition continued to improve past this point. Now I can say that I am spasm free and have been for about two months. Never give up hope!
Priscilla Poh

(Singapore)
Right
1986
Yes
No
Yes
1
03/18/08

Yes

Botox Comments: Botox Comments: For details, click here to see my "Personal Botox Experiences".

MVD Comments: Update 03/27/08: Just returned from hospital yesterday after a 9-day stay, 8 of which were spent in ICU. Post operatively, I was initially well with improvement of the right facial spasm and hearing intact. However on 2nd day, I developed right nostril rhinorrhoea and had a lumbar drain insertion. The doctor opened up the surgical wound and repaired the CSF leak on 03/23/08. I think there was an active CSF leak from the dural closure line. This was repaired and resealed with wax. The CSF was clear from then on. My recovery was very well and on 4 days post repair, my lumbar drain was removed.

Craig Poland-Smith

London, England (United Kingdom)
Left
1999
Yes
No
Yes
1
02/10/04
Prof Hugh Coakham
Bristol, England (United Kingdom)
Yes

Botox Comments: A bit of relief for spasm-about 60%.

MVD Comments: I am reborn after 4-5 years of hell.I am still a little dizzy and weak with some headache,but am wonderfully, esctatically free of spasm.My original scans had apparently been misread; Professor Coakham said it was a very straightforward operation..
Noel Polk

Carlisle, PA (USA)
Left
2006
No

No





MVD Consultation Comments: Update as of 09/02/09 – My MVD consultation on 08/18/09 with Drs. Peter J. Jannetta and Raymond Sekula, Jr. at Alleghany General Hospital, Pittsburgh, PA (USA) went very well. Both doctors were very comforting and assuring. After a few brief facial tests to observe my spasms, they spoke to both my husband and I about the statistical pros and cons of the surgery. They told me that I was a good candidate for MVD surgery, due to the fact that the onset of my spasms was less than 10 years, I'm in good health, and I have never had Botox injections. Each of which can complicate the surgery. They also told me that I should expect some numbness and drooping for approximately 4 weeks after the surgery. They compared this after affect to Bell's Palsy. They've had one patient that lost hearing on the effected side. Statistically, that would be less than 1% of all the surgeries they performed. I felt very optimistic after speaking to them, and was ready to have my surgery that day. Now, I am getting ready to battle my insurance company, but I'm not exactly sure how to start. I'd also like to schedule my surgery in January 2010 as due to my job, I'm unable to do it any sooner.
Margarita Politte

DeSoto, MO (USA)
Right
1984
No

No






Charlotte Popham
Inactive Memb.
Baytown, TX (USA)
Left
2002
Yes
No
Yes
1
04/26/06
Dr. Richard L. Harper
Houston, TX (USA)
Yes

Botox Comments: I have worked with two different doctors; one was Dr. Janovich at Baylor Medical Center in Houston but he gave me so much botox that my face fell so far, I constantly cut my lip. My fault and his fault. I did not bring my medical records from Dr. Hoasjoe in Baytown to him and so by my descriptionh of how bad my eye was closing, he choose to just give me botox around the top and bottom of my eye only. It took over 9 months to get my smile back to normal. It was extremely hard for me to live with.

MVD Comments:

Ed Porras

Cerritos, CA (USA)
Left
1978
Yes
Yes
Yes
1
11/01/97


Redwood City, CA (USA)
No

Botox Comments: Botox working fine, have not considered doing MVD again. Stops spasms, drooping eyelids, and symetry off.

MVD Comments: Spasms returned 6 months later, slightly at first then full eye closure spasms by 9 months.

Kim Porter

Jacksonville, FL (USA)
Left
1995
Yes
No
Yes
2
04/19/07
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Offers immense relief from pain of constantly twitching facial and neck muscles, and allowed me a bit more relief at night. I am up to 17 different areas that receive injections and have suffered some serious temporary paralysis on the left side of my face, but it is worth it to me to get some relief.

MVD Comments: Update as of 04/19/09 - My 2nd MVD was a very easy surgery. Dr. Jannetta removed the last source of compression, a small threadlike vein, and could see no other reason for the spasms to continue, but they actually got worse for a bit through the middle months of 2007. Since June 2008 I’ve been spasm free. Having HFS since about 1995, it is still so new to be able to sleep any way I want without being awakened by spasms, or to be able to smile almost normally - it's just awesome! It is wonderful to be able to feel like a normal person again, and not have to constantly pull my face out of tonus! Believe me, people really looked at me when I was having spasms and tonus. I want to reassure those that didn't get immediate results from their MVD that it took more than a year for mine to resolve and at this time, it's almost like I never had them, thanks to Dr. Jannetta and Dr. Sekula - and this SUPER website!

Rick Potts

Minneapolis, MN (USA)
Left
2008
No

No






Jane Pow

Wishaw (United Kingdom)
Left
1998
Yes
Yes
Yes
1
02/13/04
Mr. T. Dunn
Glasgow (United Kingdom)
No

Botox Comments: Not particularly effective - has caused droopiness in both left eye, mouth and double vision.
Janice Powell

Winston-Salem, NC (USA)
Left
1992
Yes
No
Yes
1
12/16/09
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: I tried Botox after finally referred to a neurologist. I had the twitching for 10 years before any doctor suggested the neurologist. Before that I had tried everything, including meditation, relaxation techniques, etc. all of which did not work. All the doctors said I was just stressed or anxious. Botox cleared up the twitching after a few visits and increasing the amount of injections. After that I went for treatments every few months and was twitch free for a couple of years. Then the twitching stopped for a couple of years on its own without the Botox and has now come back a couple of months ago. I was hoping it would go away on its own again, but has not. Am going back to the neurologist to resume Botox - have appointment in May 2007. Can't wait!

MVD Comments: Update as of 12/17/09 - The worst part for me has been all the anxiety and fear leading up to the surgery. I am presently spasm free! After surgery I had a pretty bad headache and nausea. The doctors and nurses have been great giving me pain and nausea medication so now I can keep my food down. I couldn't even take a few sips of water without it coming back up. But I’m so glad I had the surgery. Drs. Jannetta and Sekula did the surgery and they definitely know what they're doing. Nurse Ann Wilkinson was so nice and helpful. I am just so happy about it. I can deal with a little headache and nausea.

Deb Pratt

Middleborough, MA (USA)
Left
1988
Yes
Yes
No





Botox Comments: Works well for approximately 2 months but I still have pulling of my cheek and mouth.
Vandy Prescott

Milan, TN (USA)
Left
2004
No

No






Chris Price

London (United Kingdom)
Left
2008
No

No






Liza Price

Indianapolis , IN (USA)
Right
1998
Yes
Yes
No





Botox Comments: Works for a few weeks.
Keith Primm
Former Memb.
Tucson, AZ (USA)
Left
1995
No
No
Yes
2
11/22/97
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: MVD #1 performed in 1996 in Tuscon, AZ. From 1st MVD, had paralysis, dry eye, loss of hearing and balance problems.

After the 2nd surgery I was helped with therapy through the "Bell's Palsy Research Foundation". Greatly helped with BAHA hearing device in 2003.As of 12/14/03, Total hearing loss, some facial paralysis, Bells Palsy, Gold Weight Implants & Vertigo/Balance problems which are almost gone (12/14/03)

Carol Pritts

Decatur, IL (USA)
Right
2000
Yes
No
Yes
1
01/06/09
Dr. Oliver N. Dold
Decatur, IL (USA)
Yes

Botox Comments: Works for about 2 months and then wears off. It is very effective, I actually feel normal.

MVD Comments: Update as of 02/08/09 - I had 5 1/2 hours of surgery and I’ve been spasm free since then. I have some issues with hearing in my right ear. I don't know exactly how to explain it, I can hear, it's just not completely right. I also have trouble with swallowing but I was so blessed with no dizziness, nausea or really bad headaches. I am so very glad to be where I am and done. I went back to work last week and worked every other day. I still get tired easily. I am so very thankful I had the surgery done here, even though my surgeon hadn't done this surgery in 12 years and the guy that monitored the EMG while in surgery hadn't done this particular procedure. The doctor and the EMG guy had done their homework and were fully prepared.

Taylor Probst

Dublin, OH (USA)
Left
2007
No

No






Winifred Prudhomme
Former Memb.
Brookings, OR (USA)
Right
2001
Yes
No
Yes
1
01/16/04
Dr.John Alksne
La Jolla, CA (USA)
Yes

Botox Comments: I had Botox shots 2 or 3 under my right eye, one beside my nose and another on the cheek. They didn't seem to help and left the right side of my mouth kind of frozen. Couldn't raise my upper right side of my mouth.
Wanda Pruett

Urbanna, VA (USA)
Right
2005
No

No






Edward Pryor

Chicago, IL (USA)
Left
2003
Yes
Yes
No





Botox Comments: I've take Botox shots ever 3 months now for nearly 1 year. The positive effect seems to be diminishing.
Julio Puchuri

Lima (Peru)
Left
2003
Yes
Yes
No





Botox Comments:
Wynette Puntuna

Bangkok (Thailand)
Right
1998
No

Yes
1
04/05/00
Dr. Chopiow
Bangkok (Thailand)
No

MVD Comments: I had no complications after my MVD. However, my spasms recurred after a year. I am trying medication, if this doesn't control my spasms, then I'll have to get another MVD.
Victoria Pyles

Olive Branch, MS (USA)
Right
2007
No

Yes
1
07/31/08
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: Update as of 09/01/08 - I was so consumed with my HFS and the symptoms that I had gotten to the point that I no longer wanted to talk or sing or even eat in front of someone else. I didn't want anyone to see me get "WEIRD" in the face. Thankfully I have a wonderful GOD who opened the doors for me to be healed. I am talking about some events that eventually led me to Dr. Jannetta and MVD surgery. I am so happy to tell all of you that I am symptom free, or as I say twitch and spasm free at 1 month out. Don't let your fear of the surgery keep you from living a life without the condition.
Lucy Quek

(Singapore)
Right
2002
Yes
No
Yes
1
10/25/06
Dr. Kee Hang Ho
(Singapore)
Yes

Botox Comments: One Botox in 2002 by neurologist and stopped as wanted to try alternative treatment. In 2005 went back to Botox (3 times with a plastic surgeon), it helped with the spasm, but it caused the side of the face to droop, unable to smile. Sad looking face.

Click here to see my "Personal HFS History".

MVD Comments: Click here to see my "MVD Diary".

Conrado Quimbo

Cebu City (Philippines)
Left
2002
Yes
Yes
No





Botox Comments: good while it lasts.
Len Quinn

Toronto, Ontario (Canada)
Left
2004
No

No






Lisa Rabideau

Weymouth, MA (USA)
Right
2009
No

Yes
1
10/20/09
Dr. R. Michael Scott
Children's Hospital, Boston, MA (USA)
No

MVD Comments: Update as of 10/25/09 - Lauren’s MVD was approx. 5 1/2 hours, we were updated every hour. In the end, surgery went even better than expected, only complication to note was a small vessel that bled and she lost some blood but they were able to clamp it, it clotted on its own. They said she had a huge vessel, malformed vessel, that was on top of the CN7 and they had to "untangle" to implant the Teflon pads. Post-op night in ICU was the worst night of her (and our) life, she was so sick.... some from the anesthesia, the normal nausea. She was moved to the neuro. floor later the following day once she was stabilized. Once her catheter was out she got up and went to the restroom and was very happy to pee on her own...but not very happy about the post- catheter discomfort.. She also had the unavoidable constipation which some Ducolax and Colace quickly helped. She was such am amazing trooper through all of this. The surgeons said that her compression was one of the most prominent and severe they had seen. The best news....spasms are 99% gone... we saw only one small one the first night in the ICU and since then we have only seen a couple sporadic small twitches. They did explain that it can take some time for them to totally go away but they expect her to have a full recovery from them.
Melanie Rafael

(Phillipines)
Right
1996
Yes
Yes
No





Botox Comments: Initally it lessened the attack of spasm. On the 3rd dose, there was more of facial asymmetry, drooping of the upper eyelid and the upper lip.
Kim Rainey

Katy, TX (USA)
Right
2001
Yes
No
Yes
1
06/04/09
Dr. Dong H. Kim
Houston, TX (USA)
Yes

Botox Comments: Stopped twitching...but cannot blink right eye so it is dry and hurts. Cannot smile out of right side of mouth.

MVD Comments: Update as of 06/16/09 - I had my surgery 12 days ago after suffering with HFS for 8 years. I cannot tell you how wonderful it is to have a normal, calm face again. I am a school teacher and it was also affecting my speech let alone how it changes your face...I tried at least 5 drugs, a year of Botox (with it's own devil devised side effects) all the while not considering surgery...way to radical for me........but boy do I wish I had done this years ago. I am "SPASM FREE"

Richard Rahn

Evergreen Park, IL (USA)
Right
1999
No

No






Peggy Ramlogan

Richmond Hill , Ontario (Canada)
Left
2003
Yes
Yes
Yes
1
03/11/08
Dr. Anthony Kaufmann
Winnipeg (Canada)
No

Botox Comments: Botox is great intially and stopped the eye spasms however it paralyzed my mouth a bit and gave me a crooked smile.

MVD Comments: Update as of 03/16/08 - Dr. Kaufmann said my surgery went pretty well. I have been out of the hospital since the afternoon of 03/13. I only experienced a headache when I first woke up from surgery and now no more headaches. No real pain so far, just soreness around the incision and neck area which is expected. I've been very weak and tired since surgery but all is going well.

Mitchell Ramsey

Las Vegas, NV (USA)
Right
2003
No

No






Gerrie Rath

Eau Claire, WI (USA)
Left
2006
No

Yes
1
05/09/06
Dr. Michael J. Link
Rochester, MN (USA)
Yes>

Botox Comments: After going for my "Botox Evaluation", the Opthamologist that I was referred to is pre-authing my insurance for an MVD. I don't want anything to do with Botox, and would like to "skip to the chase".

MVD Comments:

Walter Reabold

Allentown, PA (USA)
Left
1996
Yes
No
Yes
1
08/05/04
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Injections were very painful. It helped for awhile but never fully relieved the spasms.

MVD Comments: Since surgery, have strange taste in mouth.

Len Quinn

Toronto, Ontario (Canada)
Left
2004
No

No






Betty Redlaczyk
Inactive Memb.
Fall Creek, WI (USA)
Right
2000
Yes
No
Yes
1
02/06/08
Dr. Michael J. Link
Rochester, MN (USA)
Yes

Botox Comments: It helps but not completely. Makes mouth droop when used on cheek muscles.

MVD Comments: Update as of 02/14/08 - I had a rough surgery with dizziness and upset stomach and my hearing is affected on my right side. Dr Link was surprised that I couldn't hear as he said he didn't touch the ear nerve. Immediately after surgery I could hear out of the ear. Than the next day there wasn't anything, but now a week later some of the hearing is coming back. I still have fullness in my ear and know this all has to heal. I will get my staples out next Tuesday. Yes, I would go through it again, it is so great to have my face back.

Victoria Reddic

St. Louis, MO (USA)
Right
2000
No

No






Dot Redding

Rochester, NY (USA)
Left
2008
No

No






Betty Redlaczyk

Fall Creek, WI (USA)
Right
2000
Yes
Yes
No





Botox Comments: It helps but not completely. Makes mouth droop when used on cheek muscles.
Thelma Rees

Wiltshire, England (United Kingdom)
Left
1995
Yes
No
Yes
1
01/23/01
Prof Hugh Coakham
Bristol, England (United Kingdom)
Yes

Botox Comments: Not effective, dry eye, stroke like symtoms.

MVD Comments: Update as of 01/25/09 - I am still spasm free. I feel so blessed that the nightmare of hemifacial spasm seems so far away. I will always be grateful for the support the HFSA members gave to me.

Janis Reggio

Monrovia, MD (USA)
Left
2004
Yes
Yes
No





Botox Comments: Botox injections every three months - only lasts two months.
Robin Reichert
Former Memb.
Bonifay, FL (USA)
Left
1995
No

Yes
2
06/14/01
Dr. Amin Kassam
Pittsburgh, PA (USA)


Post MVD Conditions - Pain after 5 weeks and still feel weak
Sian Reynolds

Prague (Czech Republic)
Left
2002
Yes
Yes
No





Botox Comments: I've used it once. Am considering a second dose now. Made my face look noticeably droopy for a month or more. But once that evened out, I was spasm free for many months.
Pat Reimers

Lewisville, TX (USA)
Right
1992
Yes
No
Yes
1
12/17/09
Dr. Jonathan White
Dallas, TX (USA)
Yes

Botox Comments: Extreme drooping of eye and mouth on right side Have been going to a cosmetic Botox center, not much relief, but no drooping either.

MVD Comments: Update as of 01/14/10 - I woke up following surgery in ICU with “vibrations” in my right cheek, lots of nausea, but not much pain and no hearing issues at all,and spasm free. I drifted in and out the rest of the day/night really not noticing any spasms, but continued to feel the vibrations. On 12/18, although still a lot of nausea, small amount of pain, the vibrations went away, but I started having a few spasms. On 12/26, I started having a little bloody drainage from the incision that was getting increasingly tender. The next day I returned to the hospital and was taken back to surgery to reopen the incision, clean and drain it. Remained in the hospital another 4 days, leaving the night of 12/30 with a PICC line. My hearing is still good, my spasms are down to 1-3 small ones a day and I am thankful. As awful as this all sounds, I would do it again. It’s so weird to look in the mirror and smile and not see a distorted face.

Juliet Rhoden

Lithonia, GA (USA)
Right
1995
Yes
No
Yes
1
12/03/03
Dr. Amin Kassam
Pittsburgh, PA (USA)
Yes

Botox Comments: Lost muscle control over right side of face. Arche eye brow, sagging cheek and down turned mouth. Botox has added to the disfigurement of my face.

Click here to see my "Personal HFS History".

MVD Comments: As of 12/14/03, hearing loss, vertigo, some facial paralysis, and had to have surgery on 12/10/03 to insert a gold weight in the eyelid.

Simon Riazi

London (United Kingdom)
Right
2006
Yes
No
No





Botox Comments: It was almost effective for 3-4 years, but because of serious side effects I stoped injections.
Marty Ridder

Abbotsford, British Columbia (Canada)
Right
1990/FONT>
Yes
No
Yes
1
07/10/06
Dr. Chris Honey
Vancouver, British Columbia, (Canada)
Yes

Botox Comments: Botox allowed me more control over the spasms with little if few side affects. Sometimes I had a bit more paralysis around my mouth than I wanted, but not too bad.

MVD Comments: Update as of 06/26/07 – Became “SPASM FREE” at 10 months post-op. It was a long road to recovery and I still have some balance issues but I believe that my Peripheral Neuropathy is the main cause of that. My hearing on the surgery side has not come back completely but enough that I can live with it.

Jean Riddle

Statesville, NC (USA)
Right
2000
Yes
No
Yes
1
11/09/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)

Botox Comments: I have had botox injections approximately every six months for about 2 1/2 years. Some of the injections have been effective in partially stopping the spasms, some injections have offered very little relief. The side effects have been severe redness and watery eyes, itching and pain, drooping eyelid, unable to shut my eye with one injection, drooping facial features, and of course a lopsided smile.

MVD Comments: Update as of 11/09/07 - My MVD was on 11/09/06 with Dr. Jannetta and I been “SPASM FREE” since 11/18/06. I had no nausea, dizziness, problems with balance, headaches or hearing loss. My right eye does not droop and my smile is equal. I will be forever grateful to this wonderful group, my hfs family. Dr. Jannetta and his wonderful staff are my heros, so kind and compassionate. Dr. Jannetta is still in my prayers. I thank GOD for him and his knowledge daily. I would choose MVD again in a heartbeat!!!!

Gloria Riggers

Kirkland, WA (USA)
Right
1995
No

No






Ann Riggs

Amherst, NH (USA)
Both
2007
No

Yes
2
07/23/08
Dr. Fred G.Barker
Boston, MA (USA)
Yes

MVD Comments: Update 03/14/2008: Left side of face is now normal -- palsy resolved and spasm free. What a joy! However, I had started having significant spasms on the right last fall; they were quieter after surgery, but in the past few weeks have become very strong, including full face tonus. I am already thinking MVD in June or July.

From 12/20 – 12/25 was hospitalized for a CSF leak and developed post-op facial weakness which is being treated with medications. Update as of 12/15/07 - Surgery went well, all hearing is intact and spasm are completely gone. Doing well.

MVD Comments: Update 12/14/08 - I am spasm free on both sides, but have some global tightness on the right side, probably due to the delayed post-op facial palsy. (MVD #2 for right sided HFS and MVD #1 on 12/14/07 for left sided HFS, both with Dr. Barker)

Click here to see my "MVD #1 & 2 Diaries.

Anders Rise

Benahavis, Malaga (Spain)
Left
2002
No

No






Paul Risitano

Brisbane, (Australia)
Left
2003
Yes
Yes
No





Botox Comments: Mostly effective but vision and facial distortion problems.
Jessy Ritter

Mackay (Australia)
Left
2004
Yes
Yes
No





Botox Comments: Update as of 02/03/09 - I started Botox about 10 weeks ago, besides the side effects, it’s great. First you have to try to live with HFS and now you have to try to live with Botox. The left side of my face is sort of numb, my smile is gone, and when I try to smile I look horrible. Going out for lunch or dinner is hilarious, I eat my burger while holding my upper lip up, otherwise I will bite my lip. I have to make sure I have a handkerchief, to my mouth, so I look neat. At night when I’m alone I cry, my face and smile is gone, that is the hardest part to deal with. But, at least I’m spasm free for a while, and that is worth it. My spasms around my mouth are coming back now; it was bound to happen that quickly for I did not get much the first time. The eye twitching is gone. I will go on with Botox, for it is better to live like this, than the spasms.
Michael Ritter

O Fallon, MO (USA)
Left
2002
No

Yes
1>
07/13/06
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

MVD Comments: What a miracle! I had forgotten how good it feels to smile! Dr. Jannetta and his team are incredible. The level of concern shown by them is overwhelming.
Marty Rivers

Detroit, MI (USA)
Right
1988
Yes
No
Yes
1
01/24/02
Dr. Ghaus Malik
Detroit, MI (USA)
Yes

Botox Comments: Had maximum allowable dosage. It caused facial droopiness and drooling but it worked at first.

MVD Comments: For details, click here to see my "MVD Diary.

Deannie Robbins
Inactive Memb.
Hopewell, VA (USA)
Left
2000
Yes
No
Yes
1
09/09/02
Dr. K. Singh Sahni
Richmond, VA (USA)
Yes

Botox Comments: For details, click here to see my "Personal Botox Experiences".
Pat Robbins

Goole (United Kingdom)
Left
2007
Yes
No
No





Botox Comments: Have only just had 1st treatment but it showed no improvement and has caused drooping of eyelid and mouth. As Botox doesn't appear effective will have to consider surgery.
Frank Roberta

Birmingham, AL (USA)
Left
2001
No

Yes
1
10/05/09
Dr. Winfield Fisher, III
Birmingham AL (USA)


MVD Comments: Update as of 11/05/09 - I feel great today, one month post-op. Somedays are better than others. I have been driving since week two without a problem. I am back to my normal routine except for heavy lifting or strenuous activity. My incision has healed just fine and my voice strength is back about 70%. Yes, I had a hard time talking during my first few weeks. My hearing is back to normal. Sadly, my spasms are just as bad now, possibly worse than before surgery. I am still experiencing headaches that seem to be most intense behind my ear and down my neck on the surgery side and sometimes I feel a wave of nausea from the pain. The headaches seem to be the worst in the morning when I wake up. Morning headaches were not unusual for me before surgery, but they seem to be more intense now. I have been in constant contact with my doctor about these issues and I will have an x-ray next Friday. I am trying to be optimistic that my spasms may take time to subside while preparing myself for the reality that I may be one of the small percentage of people that will not get relief from this experience. I still think that I made the right decision to have surgery. I have been pleased with my doctor and the nurses at the Kirkland Clinic at UAB.
Michael Roberts

Ipswich (United Kingdom)
Right
1993
Yes
Yes
No





Botox Comments: Ok but face drooping but prevents the twitch.
Donna Robertson

Troy, MI (USA)
Left
1999
No

No






Chris Robinson

Toowoomba (Australia)
Both
1984
Yes
Yes
No





Botox Comments:
Jane Robinson

St Clair, MI (USA)
Right
2001
No

Yes
1
05/01/06
Dr. Kenneth F. Casey
Detroit, MI (USA)
Yes

MVD Comments: Update as of 03/15/08 - On 02/25/08 I entered Detroit Receiving Hospital (a trauma hospital) due to a CSF leak. I can’t tell you how many residents, nurses, doctors told me this was impossible to happen, however, Dr. Casey had sent this fluid out 3 weeks prior and got a positive that is was in fact CSF leaking out. It took me 1 1/2 days to get a room (as I entered through emergency), another day for spinal test to find the leak location, the 4th day surgery and the 5th day I went home. I thank God every day for Dr. Casey. The leak was due to a bone spur puncturing the area above my titanium site. The CSF was pouring into my middle ear, sinus, and finally out my nose. Surgical glue was also coming loose and making its way out. Since my MVD on 05/01/06 I had healed to the point that they removed the titanium plate from my head. All repair work from MVD was removed and replaced. I’m having a longer recovery time than I would like but I feel blessed to still be spasm free. I am having pain and am so dizzy and generally worn out that as of today, I can only do 1-2 hours of wash, riding in car, or anything else. Between this site and Dr. Casey, life is a beautiful thing.
Francois Robinson

Germiston (South Africa)
Left
2003
Yes
No
Yes
2
10/29/07
Dr. J. du Plessis
Pretoria (South Africa)
No

Botox Comments: Started with 1st injection of Botox on 01/19/06. After only 5 days about 50% reduction of intensity of spasms and 70% on amount of spasm in every hour. 63 days later and the spasms are back in full swing. It even feel sometimes a bit intense as before the botox injection. Have a appointment with the neurosurgeon the 28th march 2006.

MVD Comments: Update as of 12/10/07 - MVD # 2 was quite difficult with a lot of complications. The outcome of the surgery seems to be successful, currently no Spasms, but it seems that I lost the hearing in the left side.(MVD #1 also with Dr. du Plessis on 04/03/06, was spasm free for one year after MVD #1)

For details about my MVD #1, click here to see my "MVD Diary #1".

Silme Rodrigues

Caldas Novas (Brazil)
Left
2000
Yes
No
Yes
1
08/07/07
Dr Luis Fernando
Goiania, (Brazil)
Yes

Botox Comments: I tried 4 times,but the last time it didn't work well.

MVD Comments: Update as of 08/23/07 - I had my MVD on 08/07/07 (Tuesday) and I just can’t believe how fast and well I recovered. It began at 8:15 AM and at 12:15 PM I was back, “SPASM FREE” and no pain at all, just a little nausea and with a noise that seems like a lot of water inside the left ear. On Thursday, 08/09/07, I left the hospital and stayed at my son’s home until the next Tuesday, 08/14/07. Now I am home, feeling pretty well, very happy with the changes on my face. Looks like I am younger but especially happy with the chance of living more and with a calmer face. My doctor said there was no problem during the surgery and they filmed it.

Elaine Roedell

Boca Raton, FL (USA)
Right
2004
Yes
No
Yes
1
08/18/08
Dr. Chandranath Sen
New York, NY (USA)
Yes

Botox Comments: Botox Injections, which did paralyze the right side of my face, but when I smiled, I looked as if I were a stroke victim.

MVD Comments: Update as of 10/29/08 - No complications. I have been spasm free since I came out of surgery.

Sheila Ronquillo

Florida City, FL (USA)
Left
2003
No

Yes
1
07/07/05
Dr. Roberto Heros
Miami, FL (USA)
No

MVD Comments:
Patricia Rose

Albany, NY (USA)
Right
2000
Yes
No
No





Botox Comments: Made my face droop, started to drool out of the right side of my mouth. right side of the face was starting to look different that the left side of the face.
John Rossi

Ocean Springs, MS (USA)
Right
1995
Yes
Yes
No





Botox Comments: For details, click here to see my "Personal Botox Experiences".
Laurie Rothfuss

Lafayette, CA (USA)
Right
2003
Yes
No
Yes/FONT>
1
07/29/08
Dr. Brian Andrews
San Francisco, CA (USA)
Yes

Botox Comments: The day after my first round, there was no twitching. I thought this was the answer! The next day, my entire face was sagging and I couldn't close my right eye. Six months later, I saw a different neurologist and have received three treatments. She used much less botox and did not inject eyelids. I was injected along the outside corner of my eye, between my eyebrows, above my eyebrow, and near the corner of my mouth. The constant eyetwitching stops for about 1 month, but my smile disappeared. I look freakish when I do smile. My last treatment was 11/2007 and I don't think I will try this again.

MVD Comments:

Shahin Rouhani

Jacksonville, FL (USA)
Right
1993
Yes

Yes
1
08/15/05
Dr. Robert E. Wharen
Jacksonville, FL (USA)
Yes

MVD Comments:
Robin Row

Enid, OK (USA)
Right

Yes
No
Yes
1
01/29/09
Dr. Peter J. Jannetta
Pittsburgh, PA (USA)
Yes

Botox Comments: Had 50 units on 12/17/2007, but did not help - they repeated on 12/20/2007 and made it "tolerable", but still twitching and returning to same level as pre-injection.

MVD Comments: Update as of 02/03/09 – I woke up “spasm free” and have not really had any pain except for a very sore throat and swallowing difficulty. Two snack packs of jello and broth are all I have been able to consume..maybe I will lose some weight. When I think about how the "demon" is gone I just want to cry with joy. The Doctors said I had a very difficult surgery and they had to lift and pack 5 areas. My HFS started in the cheek so we knew it was atypical. I would do it again in a second if it was necessary. Thanks again to all of you who have helped me through this.

Judy Rushlow

Baton Rouge, LA (USA)
Right
2001
Yes
No
No





Botox Comments: It was a horrible experience.
Teresa Russell

Little Rock, AR (USA)
Left
2002
No

Yes
2
10/22/09
Dr. Raymond Sekula, Jr.
Pittsburgh, PA (USA)


MVD Comments: Update as of 08/19/09 - (MVD #1 on 11/29/07 with Drs. Jannetta & Sekula - was spasm free but spasms returned).
Maureen Rytel

Orlando, FL (USA)
Left
2004
No

No






Ruth Saavedra

Albuquerque, NM (USA)
Right
1995
Yes
No
Yes
1
06/23/05
Dr. Kenneth F. Casey
Pittsburgh, PA (USA)
Yes

Botox Comments: This was scary, I couldn't close my right eye and I could't move the right side of my face at all for about a month. I received the injections early in 1999 and I still can't move the right side of my mouth very well. I have a lopsided smile.