Botox® Experiences - June Walker
I've had right side HFS for 21 years and 14 years of them with Botox® usage (November 1993 until March 2007). The Botox® injections were administered by two different neurologists, with two completely different results.
In December 1986 I had an appointment with a Neurologist, Dr. G. Isralian, Credit Valley Hospital, Mississauga, Ontario, Canada, who examined me and administered a blink test confirming I had Hemifacial Spasm. I had never heard of HFS and there did not seem to be any literature available on the condition. I was scheduled for a MRI, CT Scan and evoked potentials after my baby was born.
In February 1987 I had an appointment with a Neurosurgeon (Dr. Schutz, Mississauga General Hospital, Mississauga, Ontario, Canada), who confirmed the neurologist’s findings that I had a condition called HFS. The neurosurgeon informed me I had two options for my HFS, an anticonvulsant medication or Microvascular Decompression surgery. He recommended MVD surgery but it would have to be performed by Dr. Peter J. Jannetta in Pittsburgh, PA.
My right side HFS was mild around my eye and cheek for 7 years. In August 1993 my family doctor recommended I see another neurologist, Dr. Kern at Credit Valley Hospital, Mississauga, Ontario concerning the progression of my HFS. My spasms are now increasing in duration and continuing further down my right cheek. I had my appointment with Dr. Kern in early September 1993; he informed me that there was a movement disorder doctor coming to the Credit Valley Hospital who would be starting to use Botox® for HFS sufferers. I thought about it for quite awhile and decided to give Botox® a try. Great, I am going to be a guinea pig!
In November 1993 I had an appointment with the movement disorder doctor who administered Botox® around my right eye and upper cheek area. The next day my eye would not close properly. I called the doctor and she told me that it was one of the side effects of the Botox® and it would be better in 2-3 weeks. I was instructed to insert Tear Gel in my eye each night before going to bed as this would keep my eye lubricated. I used Tear Gel daily for 14 years. The tears did not return to my right eye. The Botox® helped my spasms, but my eye took three weeks to close completely. The Botox® started to wear off after 2 months. I continued receiving Botox® every three months. The next 8 years my HFS progressed to the point where I had 16-18 injections every 3 months in the upper and lower eyelid and cheek area. The spasms are now progressing to my lower cheek and are distorting my mouth. In 2001 as my spasms became even more severe, the doctor recommended a Botox® injection below my lip. I realized almost immediately there something was wrong; I had no feeling in the lower right half of my lip. The movement disorder doctor did once not recommend MVD surgery. By now the spasms are affecting my eye, nose, cheek and mouth. I detest this condition. I am in the process of searching for a new doctor to administer the Botox®.
In March 2001 I received notification from “Circle of Friends”, a previous HFS support group, that there was a conference to be held in Toronto, Ontario in April 2001. I was informed there would be a Dr. Anthony M. Kaufmann from Winnipeg speaking on MVD surgery. I was so excited to be able to finally meet or hear someone speak about HFS and MVD surgery. My prayers had been answered. My husband and I attended the conference and viewed a video of MVD surgery. We were very impressed with Dr. Kaufmann’s knowledge and professionalism. I knew then that when I was ready for surgery, Dr. Kaufmann would be the surgeon of my choice. I expressed my feeling to Dr. Kaufmann, he gave me one of his business cards and to this day I carry that card with me. Also at the conference there was a Dr. Stephen Kraft of Toronto, Ontario speaking about HFS and Botox®. I spoke with Dr. Kraft and inquired if he would be able to take me as a patient. I felt I had won the jackpot, Dr. Kraft for my Botox® and Dr. Kaufmann for MVD surgery. I came away from the conference feeling very confident that I had made up my mind to eventually go ahead with MVD surgery.
I contacted Dr. S. Kraft for an appointment to administer my Botox®. My first appointment with Dr. Kraft, he administered the Botox® around my right eye, cheek, nose and chin area. He injected in different sites than my previous doctor. I was amazed when I was able to close my eye after the injections. I believe that this was due to the sites that Dr. Kraft injected the Botox®. The Botox® alleviated the severity of the spasms for 2 months, with no side affects. As each year passed my spasms were becoming more severe. I required more Botox® injections and now the spasms are in my neck. I became very self-conscious of my spasms. When I talked, laughed or smiled the spasms would start with a vengeance. I had developed the habit of holding my hand over my right cheek. I would get very frustrated when trying to apply my mascara, as soon as I would get it on my eyelashes, I would spasm and it would be all over my cheek. I now have ringing in my right ear, which makes it very difficult to sleep.
In 2002 during my search on the Internet for information on HFS and MVD surgery, I came across the HFSA and immediately became a member. I was so excited to have at last found other people with the same condition as myself. I spent countless hours on the site, absorbing as much information as I could. The HFSA has a wealth of knowledge. My prayers had been answered.
I am now in my 19th year with HFS. In March 2005 I stopped my Botox® injections for 8 months in preparation for MVD surgery. Without the Botox® I realized how severe my spasms really were. They would start in my eye, down my cheek, distort my nose and mouth and spasm in my neck. Prior to this, Botox® had given me some quality of life.
In November 2005 I contacted Janice Nesbitt in Dr. Kaufmann’s office to let her know that I was ready for surgery. I was preparing for surgery when my sister-in-law was diagnosed with terminal cancer. I called Janice and told her I had to put my surgery on hold; back to Dr. Kraft to start Botox® injections again. In March 2006 my brother was diagnosed with terminal lung cancer. December 2006 – March 2007 I spent in Quebec with my brother and family. My spasms are extremely severe, from my eyebrow to my neck.
In April 2007 I contacted Janice Nesbitt in Dr. Kaufmann’s office and told her I was ready to have my MVD surgery. My last Botox® injections were in March 2007. I could no longer tolerate this demon any longer. I received an information package from Janice, in preparation for MVD surgery. On July 13, 2007, after 21 years with HFS, I am finally going to meet another person who had HFS and a successful MVD performed by Dr. Kaufmann. That person was Paula Hiltz and she will always hold a special place in my heart. Seeing Paula’s smile made me more anxious to have my surgery date confirmed.
On August 24, 2007 I received a call from Andrea Kinnear in Dr. Kaufmann’s office confirming my surgery date of October 2, 2007 at 9:30 a.m. I have been waiting so long for this date; it is difficult to put into words how I feel. On September 5, 2007 I received an email from Andrea to rebook my surgery to September 27, 2007 at 9:30 a.m. My consultation with Dr. Kaufmann is scheduled for September 26, 2007 at 8:30 a.m. and the anesthetist at 1:30 p.m.
On September 8, 2007 I noticed fluttering under my left eye. Oh no, not HFS on my left side now. What are the chances of that happening? I decided to concentrate on my upcoming MVD for right side HFS and deal with the left side later.
We left for Winnipeg at 5:30 a.m. on September 23, 2007. I had my consultation with Dr. Kaufmann on September 26, 2007 at 8:30 a.m. He answered all my questions and informed me of all the possible risks. Dr. Kaufmann made me feel at ease and confidant that I had made the right decision. He noted the muscle weakness in my eye due to the extended use of Botox® and the area on my right lower lip; which I have had no feeling in for years, may always stay that way. I am fully aware of the risks and outcome of MVD surgery due to my extended use of Botox®. On September 26, 2007, the night before my scheduled surgery I received a call informing me my surgery was cancelled. My surgery was rescheduled for 7:30 a.m. on Tuesday, October 2, 2007.
On Tuesday, October 2, 2007 at 7:30 a.m. I had successful MVD surgery performed by Dr. A Kaufmann at University of Manitoba, Health Sciences Center, Winnipeg, Manitoba. I was blessed with no complications and was "SPASM FREE". Thanks to the expertise of Dr. Anthony M. Kaufmann. Also, I must add since surgery I have minimal weakness in my right eye and 75% feeling back in my lower lip. Those are both added bonuses to my success story.
For details of my HFS experience leading up to my MVD see my Personal HFS History.
For details of my MVD surgery see my MVD Diary.
Permission granted the HFSA to post Botox® Experience on website.
June Walker, March 19, 2008
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