MVD Diary - Ginny Bigelow

Surgery performed by:   Dr. Gail Rosseau
Surgical Location:         Chicago Institute of Neurosurgery & Neuroresearch (CINN),
                                      Chicago, IL (USA)
Surgery Date:                April 03, 2006

Diary prepared by:        Ginny Bigelow
Date diary finalized:      May 30, 2006

 

MEDICAL HISTORY:

1999:
 Occasional eye twitching in right eye became more frequent. Primary care doctor (HMO insurance at this time) dismissed it as stress related.

 

2000:
 Same primary care doctor finally agreed the problem was likely due to something other than stress and referred me to a neurologist. In August 2000 I saw Dr. Glenn Glista, neurologist, who immediately diagnosed hfs – which of course I had never heard of. He told me about Dr. Peter Jannetta, and wrote down the name of a book I should read, “Working in a Very Small Place -The Making of a Neurosurgeon”. Dr. Glista said there were 3 options for treating hfs: medication, Botox® injections and Microvascular Decompression surgery (MVD). He gave me 2 prescriptions for medication (muscle relaxants) to try, but stated that the only “cure” for hfs was surgery. Dr. Glista also stated that he knew of no neurosurgeon in the Chicago area that had the skills of Dr. Jannetta. He was very frank in saying that the condition would not improve on its own, was not caused by stress or other external factors, and that it would only get worse. He explained that the 7th craniofacial nerve was being compressed by a vessel/artery, and he explained the MVD surgery and how it could alleviate the compression(s). After hearing about drilling a hole near the brain stem and other details of the surgery, I left feeling overwhelmed.

Note: Dr. Glista did not mention Hemifacial Spasm Association.

For the next few days, I searched the Internet looking for hfs information, but did not find the HFSA website at this time!

I started taking one medication (Zanaflex) which caused side effects such as nausea, dizziness and headaches and did not help the twitching. I only took it for a couple of weeks because two weeks following my appointment with Dr. Glista, I was diagnosed with breast cancer. Needless to say, my twitching eye moved to the background as I dealt with cancer. I was fortunate to have early stage cancer, which had not spread to the lymph nodes. Following a lumpectomy and axillary node dissection, I had 6 weeks of daily radiation. I remember someone in the pre-op holding area of the hospital commenting how my eye was twitching in time to the beeping of the heart rate monitor! I was fortunate that I did not need chemotherapy. I am now almost a 6 year survivor!

 

2001 - 2003:
Back to “normal” with my eye still twitching, I decided to try the second medication prescribed by Dr. Glista which was Baclofen. I did not have any side effects, and I kind of convinced myself it was helping somewhat. I continued to take Baclofen, under the direction of my primary doctor until 2004 with several increases in dosage along the way. I also took two Slow Mag daily for about 2 years (2003 –2005). At the beginning, I really felt this helped control the spasms.

I believe I found the HFSA website in December, 2001 (not sure of this date) and like all of us, I was thrilled to find such a wealth of information I never even considered Botox®. The thought of brain surgery terrified me, yet I always knew I would eventually come to that point. Over the next few years, I faithfully read all the postings but remained a “lurker.”

 

July 2003:
My husband John and I attended the HFSA meeting in Pittsburgh which was such a wonderful opportunity to meet other hfs sufferers and to absorb all the detailed medical information from the fantastic group of physicians on the panel. I later purchased the videotapes of the meeting and learned something new each time I watched them.

 

2004:
After my request for a consultation within the HMO, in February 2004 I was sent to a neurosurgeon within the network. (Dr. Daniel Harrison) Although he had performed MVD's in the past, he was unwilling to give me details as to how many, etc. He agreed with the diagnosis, and was familiar with Dr. Jannetta’s work. However, there was no way I would allow him to operate on my brain!

In July 2004, I was able to switch to Cigna PPO insurance, which would give me more freedom to choose a surgeon. Nevertheless, I was still “waffling” and dragging my feet about making the final decision.

In addition to the HFSA website, and the 2003 conference, the most meaningful support has come from the “Chicago 5.” Initially this was 5 women from the Chicago area who got together every few months for lunch. I was the only one who had not had an MVD. Two in the group eventually had a second MVD. While all were not totally spasm free, their courage and encouragement motivated me to move forward. (By the way, the group of five has since expanded and includes up to 15 at various times.)

I learned about Dr. Gail Rosseau through this group and in researching her, discovered she had trained for a year under Dr. Jannetta. For personal and family reasons, I did not want to travel to Pittsburgh for surgery although the preponderance of website postings certainly made it seem foolish to consider anyone other than Dr. Jannetta. Cigna verified that Dr. Rosseau and CINN were in my PPO network, so that was a hurdle I didn’t have to jump.

 

2005:
Continued “lurking” and absorbing information, feeling somewhat discouraged by reports of so many reported post surgical problems and so many “failed” surgeries

09/30/05: Katherine Hughes appeared on a local Chicago TV station with Dr. Gail Rosseau in a short feature on HFS. Katherine is part of the Chicago 5 group and had her first surgery with Dr. Rosseau.

 

ROAD TO MVD:
As it is so often said, “you’ll know when the time is right for you to have surgery!”

 

2006:
After a lot of soul searching and planning, at age 62 I retired as of 3/1/06. As a State of Illinois employee, I am fortunate to have ongoing health insurance as a retiree. In the back of my mind for years, I had felt I should wait until retirement, not wanting to deal with the pressures of work, medical leave, etc. My family was supportive of whatever decision I made, but were encouraging me to think strongly about surgery. By this time, my right eye was completely closed a good part of the day, the side of my face from the corner of my mouth up to my eye was drawing up, and spasms were ever present. My sleep was not often interrupted, but it was frequently hard to fall asleep due to the spasms. My face was always “tired.” I was becoming more self conscious, and while co-workers had accepted my condition (after explanations), like so many others, I was becoming less social and reluctant to be part of family pictures. Driving, especially at night) was more difficult, and my passion for reading was greatly affected. In short, I had reached “that point” where I was ready for surgery.

 

03/24/06 - Consultation with Dr. Rosseau: 2006:
I immediately felt comfortable with her and the CINN facility. For this consultation, she only required a recent MRI of the brain, which I had done at a local hospital on 3/20/06. She answered my questions honestly, and interestingly, referred to this type of surgery as a “functional” surgery – meaning it was not medically necessary or life threatening, but seriously affecting daily life functioning. In her opinion, MVD's are most successful if performed within approximately 8 years of symptoms. She felt not having Botox® was also a plus. The “official” terminology for the surgery was: RETROMASTOID CRAINIOTOMY FOR MICROVASCULAR DECOMPRESSION. She agreed that I was a good candidate for a MVD, and asked when I wanted to do it! She checked her schedule, and before I knew it, I was scheduled for 04/03/06 – only 10 days away!

Surprisingly, on my way home, I felt very calm and confident that the right decision had been made!

The Chicago suburb I live in is about an hour’s drive from the northwest side of Chicago where CINN is located. All the pre-op testing was to be arranged by me and done locally through my primary doctor except for the EMG which needed to be done at CINN. Dr. Rosseau’s staff obtained all the Cigna pre-certification needed for the testing and the surgery (although some didn’t get approved until the very last minute)! I saw Dr. Rosseau on a Friday, and all pre-op reports had to be at CINN by the following Friday at noon. Needless to say, it was a hectic week. I had an the EMG, Audiogram, 2 sets of labs, chest x-ray, and saw my primary doctor to get medical clearance for surgery.

Dr. Wang, the CINN neurologist doing my EMG stated that the test very clearly verified the hfs diagnosis and indicated that lateral spread was present. Although I had never doubted the diagnosis, I was relieved to have it confirmed by the EMG. Dr. Wang was so good at explaining what he was doing, and it was only mildly uncomfortable, not at all painful!

My family were all very supportive of my decision, yet surprised it was happening so quickly! Family consists of:
John, husband of 38 years!
Kara, married daughter who lives in a nearby suburb
Cheryl, married daughter living in California (who flew home for the surgery)

 

Monday, 04/03/06: - “MVD” – DAY OF SURGERY:
Surgery was scheduled for 8:00 am with 6:00 am registration. As my husband, 2 daughters and I were exiting the parking garage (on a cold, dark and rainy Chicago spring morning), somehow I tripped and fell face forward. I will never forget the sound of my head (mostly on the right side of course) hitting the concrete! My glasses went flying and the right lens popped out. My forehead immediately had a large bump and my forehead, nose, temple and eyelid were scraped. Both ankles had twisted and were sore as were my right knee and elbow. (Note: When valet parking is available – use it!) After a few moments I was able to get up and walk into Admitting. They weren’t sure if I should proceed with brain surgery, but my eye spasms were still there, so I said I wanted the surgery if it was okay medically. Irrationally, I briefly wondered if the hard fall could have knocked loose the compressions! No such luck! The “house doctor” checked me out and decided I didn’t have a concussion. When Dr. Rosseau examined me, she said it was up to me, but she saw no medical reason to postpone surgery, yet warned me that the C-clamp (vise) they would use to hold my head in place might cause some additional pain since it would likely be in the area bumped by the fall! Anyway, it was a “GO” and I proceeded through pre-op preparation.


Cheryl (left) and Kara (right) waiting with me to be taken for surgery.

Note: CINN is a small private hospital that provided excellent care from the very beginning. The atmosphere is also much more relaxed and flexible than larger, teaching hospitals.

After being gowned, fitted with support stockings, getting the IV started (antibiotics were started right before surgery), I was moved to the “holding” area where I chatted with the anesthesiologist while waiting.

My family was sent to the waiting room. Staff had previously taken my husband’s cell phone number, and said they would communicate with him via his cell during the course of the surgery, which they did about every half hour. Following surgery, Dr. Rosseau met with my family to report a difficult, yet successful surgery. .

Surgery began about 9:30 am and lasted approximately 3 hours.

I really have no memory of being in Recovery, but Dr. Rosseau reported that she stayed with me for a half hour in Recovery waiting for spasms to stop. They were still appearing intermittently. I was taken for a CT scan of my brain, then moved to ICU about 3:30 PM where my family was waiting.


Picture taken upon arriving in ICU after surgery.

Dr. Rosseau came in about 4:45pm and explained that there are 2 types of “successful” MVD surgery: 1. Patient wakes up immediately spasm free 2. Spasms “burn out” after 2-3 months or sometimes longer. Some spasms are “learned behaviors” and just take time to disappear.

Specifically, she explained that the intraoperative monitoring located my lateral spread and showed that it had been eliminated. She inserted 11 pads! In response to my questioning, she stated that most of her MVD’s involved insertion of 5 - 7 pads. Of course I immediately worried that my compressions had been so much worse than I had imagined! Dr. Rosseau explained to my family and I that there was a large blood vessel with quite a few “branches” that was compressing both the 7th & 8th nerves. She felt the surgery was successful and the residual spasms were “slight.” There was no additional hearing loss (I previously had minor hearing loss in both ears)

Truthfully, I don’t remember much about that afternoon, but Kara took notes about everything that Dr. Rosseau said.

A catheter was in place, and the automatic leg compression sleeves were doing their thing, which actually felt good. I was hooked up to a morphine pump – which I never used! I had very little pain – mostly the back of my neck was stiff and sore. I had a mild headache – which was probably more from the fall. I felt very groggy and nauseous and kept dozing off. I never realized ice chips could taste so good! My entire head was wrapped in a bandage, which surprised me. My face was swollen.

I remember the overwhelming feeling that I had survived the surgery! While I was disappointed not to be totally spasm free, I felt there was improvement. My family reported my spasms were much lighter and less frequent.

Cheryl decided to stay in the room with me overnight which was allowed. I slept off and on and was happy to have her there with me.

The nursing care was excellent, and of course, they checked constantly all night long asking me repeatedly what day it was, what my name was, etc.

 

Tuesday, 04/4/06 – First Day Post-Op:
Early morning, I received a bed bath, which felt wonderful. Later that morning, the catheter was removed, and a portable commode was placed next to the bed. The leg compression things were removed. I received my regular medications, and only took Tylenol for pain. Flexeril was given to me as a muscle relaxer for my neck. The oxygen tube was removed from my nose, and the IV was removed. My neck was still sore, and the nurse provided an ice pack, which felt great. Still no real pain! The head bandage was replaced but not as tightly wrapped.

I had not eaten since dinner on Sunday, but the liquid diet of watery broth, disgusting yellow Jell-O, and coffee (not a coffee drinker) were not appealing, and I began to vomit after only a few sips of broth. Basically, I did not eat anything from that point on until I got home except for some crackers and water. I had a funny taste in my mouth. I was surprised that there was no soreness from the anesthesia intubation, yet I did have a bruise at the corner of my mouth.

My right ear had a sensation of fullness, and my own voice sounded strange to me.

Eye spasms continued several times an hour, but no facial involvement.

I needed help from the nurse getting up to use the commode.

The Occupational Therapist got me on my feet for a walk down the hall. I was very dizzy, and he wrapped a strap around my waist so he could hold on to me. I was very wobbly, and he suggested I pick a focal point ahead of me instead of looking down at the floor. That helped somewhat. That short walk was exhausting!

Also received a breathing tube “gadget” that I was supposed to practice breathing every hour, continuing at home. However, the machine broke the first day I was home.

In spite of being awakened frequently by the nurses, I managed to sleep fairly well. I did not feel like reading (my vision was a little blurry too), and I kept falling asleep when I tried to watch TV, so I basically just napped and talked to my family who came and went throughout the day.

I asked when I would be moved to a regular room and was told there was basically no difference and the ICU room was more convenient for the staff.

 

Wednesday, 04/05/06 – Second Day Post-Op:
The head bandage was removed, and only the incision was covered. The incision area felt numb. Ear fullness continued, but no problems hearing.

I was taken for a walk down the hall to the therapy shower room where I was able to shower and shampoo – felt wonderful, though tiring. I received a second gown, worn as a robe. No one said anything about wearing my own clothes, and I didn’t think to ask. The double gowns were fine.

I was moved down the hall to a regular room – private with its own bath. I was switched from liquid to a regular diet, but I still had such a bad taste in my mouth, and nothing was appealing, so I didn’t eat.

The therapist had me walk farther, and also up and down some steps in the therapy room. Still needed the strap around the waist for the therapist to stabilize me. Oddly enough, the steps were easier than walking a straight line! My therapist was the same one that Katherine Hughes had – probably the same corny jokes too! I was encouraged to sit up in a chair and move around on my own. I was still dizzy, but managed to get myself in and out of the bathroom. Big accomplishment of the day was a normal bowel movement! Told to take Colace (stool softener) once I got home, although since I didn’t use morphine, I didn’t really have problems once I started eating again. The combination of anesthesia and pain killers can cause problems with constipation.

A medical psychologist visited me in the afternoon for about a half hour to determine if I had any issues regarding my surgery – especially since my eye was still twitching.

Dr. Rosseau was not in the hospital, but called to check in. Continued to encourage me saying the surgery was successful and she expected the spasms to go away in time.

John walked me around the halls. I was somewhat less wobbly!

 

Thursday, 04/06/06 – Third Day Post-Op:
In the morning, Dr. Rosseau stopped in and said I could go home. Prescription given for Flexeril (muscle relaxer) to take at home.

It felt good to get dressed. The therapist came for one last walk and stair climbing.

My favorite nurse gave me a little Baggie with my hair that they had cut off!

Throughout my stay at CINN, various staff stopped by my room to see the “wipe out lady!”


John ready to take me home!

Riding in the car going home made me feel very dizzy.

Once home, I got a good look at my incision which is about 4-5 inches long with 24 sutures. I could see the spot on my forehead where the vise had been, and got a closer look at the facial bruising from my fall. The incision area was numb and itchy. I had a mild headache on the surgery side and still had stiff neck.


MVD Incision - 3 Days Post-Op

 

1 Week Post-Op:
Spasms were becoming less frequent and less severe.

Continued to be very dizzy and wobbly in walking. I gave in to being lazy and took morning and afternoon naps, but still slept well at night. A friend gave me sleep shirt with this very appropriate quote: “How nice to do nothing, then rest afterward!” Totally appropriate for recuperating from MVD surgery and enjoying retirement.

My hands were trembling for a few days, and I had double vision upon awakening. Still had fullness in the right ear. Some slight headaches. Took Tylenol occasionally.

Most annoying was the altered sense of taste, which continued. Sadly, I discovered the regular Pepsi I’m addicted to tasted awful as did all food and even water. Nothing seemed to help (mints, frequent brushing of teeth, gum, etc) I tried to eat a little bit, but lost 12 pounds in the first 10 days after surgery. I would gladly have kept the weight if I could enjoy Pepsi again!

Dr. Rosseau called mid-week and suggested I keep a log of when the spasms were occurring. .

By the end of the week, I was doing small household chores and cooking (simple meals!).

Although my husband filled the prescription for Flexeril, I didn’t take it because it made me feel dizzier. I took Tylenol PM and slept soundly – happy to be home in my own bed.

 

Friday, 04/14/06 – 10 Days Post-Op:
John took me to my appointment with Dr. Rosseau to have sutures removed. Everything OK and looking good. I was told I could drive and do anything I felt like doing, but to continue to rest a lot.

Dr. Rosseau said that the problem with taste was not common, but not uncommon and should clear up eventually. She didn’t see a problem with double vision upon examination.

John and I started walking around the neighborhood every evening – gradually adding distance. Still feeling wobbly – tendency to veer off to the left when walking.

 

2 Weeks Post-Op:
Spasms diminishing, some days no noticeable spasms. Neck stiffness gone. Dizziness greatly reduced. Altered taste continued.

Started to drive, but limited myself to short trips. Tried shopping, but crowded stores made me dizzier. Stamina very limited. Still taking naps. A day of high energy and activity would be followed by day of rest and limited activity. Hard to pace myself. Double vision less bothersome. Going down stairs was difficult because I was afraid of losing my balance. Occasional mild headaches. Facial bruising fading. Sleeping about 9 hours each night, even after napping during the day. I only took Tylenol PM the first two nights at home.

So glad I’m retired and can recuperate slowly! Did lots of reading, watching TV and catching up on computer. Wished weather was warmer so I could sit outside.

 

3 Weeks Post-Op:
Spasms appear to be gone, but I’m afraid to jinx it by saying so! Incision itchy and scaly, but I had been told not to put any lotion on it until it healed more. Hair is growing back, but incision shows due to short hair. I was more self conscious about my bruised face than my incision!

Altered taste has not improved.

I was pretty much doing regular activities and shopping, but still got tired easily and still felt wobbly sometimes when getting up or walking too fast.

By the end of the week, I felt I could have gone back to work if I was still working.

 

1 Month Post-Op:

05/04/05: Returned to CINN for follow-up MRI of brain.

05/05/05: Appointment with Dr. Rosseau. (Note: for both of these appointments, I drove by myself navigating 3 Chicago expressways each way during morning rush hour without difficulty.)

Dr. Rosseau was pleased with my progress and saw no spasms! OK to use Vitamin E cream on incision. No need to return for 3 months. No answer for taste problem.

I asked for a copy of my operative report (which I highly recommend to everyone). Here are some excerpts:

“......After prepping, linear incision made and self-retaining retractor placed.... Retromastoid craniotomy margins drilled smooth ... waxed on opening and again on closing to prevent CSF leak............CSF gently aspirated.....7th & 8th nerves identified, both visually and electrophysiologically.... the Loop of AICA traveled between the 7th & 8th nerves – compressing both........... the Aica branches off making it exceedingly difficult to mobilize the major vessel.....Lateral spread was noted preoperatively and intraoperatively on electrophysiologic studies.... eleven ‘pledgets’ were placed..............only after placement of the 10th pad, did the lateral spread completely disappear..............an additional 11th pad was placed......”

“The area was observed for 10 minutes under microscope and electrophysiologic guidance confirming no lateral spread. The 7th nerve stimulated normally on EMG.”

The bone flap was replaced with sutures. (Note: Dr. Rosseau does not use titanium mesh to cover hole.)

Present during surgery: Dr. Gail Rosseau – neurosurgeon, Asst. Surgeon, and neurologist/electrophysiologist.

 

5 Weeks Post-Op:
I spent the day with a friend recovering from major orthopedic surgery. She was hooked up to two machines to control pain. She has been in excruciating pain and very limited in activity for weeks, as well as enduring hours of daily physical therapy. Brain surgery is a breeze in comparison!!!!!

 

6 Weeks Post-Op:
My family joined me in our 6th annual Mother’s Day walk along Chicago’s lakefront for Y- Me breast cancer. I was able to walk a total of about 4 miles! It is a special day for me each year and especially so this year! I was exhausted, but proud that I made it (yes, my walk is still a little wobbly sometimes!)

 

8 Weeks Post-Op:
The fullness in my right ear is gone, but now I’m aware of a “thumping” sound sometimes that sounds like my heart beating and I'm experiencing some ”crackling” sounds in the ear. The incision is healing well but the taste problems are still a major concern.

I'm happy to report that I am "SPASM FREE"!

This whole process was made so much easier because I knew what to expect from all of the postings over the past few years, the 2003 HFSA meeting & video tapes, and the wealth of information provided on the HFSA website. Having had the opportunity to meet and discuss surgeries with the Chicago members has been invaluable. Sincere thanks to everyone for the support and encouragement. It may have taken me a long time to decide on surgery, but I have no regrets and would do it again if necessary. I highly recommend Dr. Gail Rosseau and CINN.

Permission granted the HFSA to post MVD Diary on website.
Ginny Bigelow, June 12, 2006

 

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