Diagnosis of HFS:
I first felt flutters under my left eye around 1994. I had been in a job the last four years that required me to type 8 hours a day, 5 days a week. I experienced a lot of eyestrain. The flutters were more of a nuisance and would come and go. Over the next 6 years the flutters became what I considered a severe eye tick. My mouth had started to pull upwards also when my eye was moving. On a visit to my Optometrist regarding getting glasses for distance, he noticed how much my eye and face moved and told me that what I had was called hemifacial spasms. He set up an appointment with an Ophthalmologist to confirm this.On my first appointment with the Ophthalmologist in 2000, (Dr. Peter Dolman, Vancouver) he confirmed the diagnosis of left-sided Hemifacial Spasm. He encouraged me to have Botox shots to give temporary relief from the spasms. He did not encourage surgery at all due to risks involved, although he did mention it was one of three things available for HFS treatment, the other being medications. I chose to try Botox.
Treatment for Hemifacial Spasms:
For the next 6 years I was treated with Botox, having several Botox shots around the eye area, above and below it, a shot in my cheek, and sometimes a shot next to my mouth to control the upward pulling movements. I found the Botox lessened the eye spasms a great deal for up to 3 months at a time. There were side effects immediately experienced, however. At first, my left eye did not close fully but this was remedied by my Opthalmologist adjusting the amount of Botox used. However, Botox shots resulted in weakness of the muscles on the left side of the mouth area and I had a droopy mouth and lopsided smile for 6 years. As the Botox wore off, my left eye would get smaller. My vision was impaired quite often.
Search For A Cure:
By 2006 I was quite fed up with the way I looked and felt. My left eye partially closed when spasms again became bad as the Botox wore off, and my mouth pulled upwards with each spasm, making it hard to see, drive and read. Plus, I looked awful and it was embarrassing to be seen looking that way. I did not like going out for fear someone would stare at me. I did some research on the Internet and soon found the Hemifacial Spasm Association (HFSA) website. I found there were actually people in my own area that had this same disease. Up until now I had not met one person with HFS and had felt quite alone in having this disease! I soon became a member (Sept./2006) of HFSA, and have since learned so much from this supportive website and from its members, and especially about MVD surgery as a cure for the spasms. I was fortunate enough to even meet a few members at an arranged meeting in my area in the Fall of 2006. Some had already had their MVD surgery. What I heard at that meeting, and later, after reading many e-mails from members over the next few months, helped me decide what to do next. It gave me enough knowledge and courage to proceed with having Microvascular Decompression (MVD) surgery. In preparation, I stopped getting Botox shots because I had learned one has to be off Botox for a number of months (up to 9 months) before having surgery to have the best possible outcome. I stopped them in December 2006.
Choices and Decisions To Be Made:
I had become my own advocate of sorts, gaining the incredible support and knowledge of HFSA members and the HFSA website which offers a myriad of thoughts, questions, answers and suggestions to consider before one chooses to have MVD surgery. My next step was to choose and contact a neurosurgeon with expertise in this particular type of surgery. I had learned that for the best possible results, the hospital must have the use of Intraoperative Monitoring equipment for both auditory and facial nerve observation. This equipment is necessary to further enable the surgeon to prevent damage to the auditory (hearing) nerve and to monitor lateral spread in order to find all the compressions so the surgeon could pad them off. This would result in the end of the spasms in most cases, although there was a possibility it could take time for this to happen as the brain has to heal after surgery. I also learned that the surgeon should be well experienced and do MVD’s very often, in other words be the very best at doing this type of surgery involving the brain, because there were risks involved. So I would have to ask the necessary questions before I made the decision to have MVD surgery done by the best possible neurosurgeon in this field.
Neurosurgeon and Surgery:
I live in Canada and wanted surgery done in Canada because my medical plan would then cover the cost of the surgery. I checked locally and found that this type of surgery could have been done here where I lived if I was willing to wait another year or so for it. But I was not.By this time I had contacted several members who shared much knowledge with me about their MVD surgery done in Winnipeg, Manitoba, Canada by a neurosurgeon there who had the necessary experience and expertise in doing MVD surgeries. He had trained in Pittsburgh, with the renowned Dr. Jannetta who had pioneered MVD surgery. I also did my own research on this doctor and the website for the hospital there, and then I decided I would go to Winnipeg, Manitoba for my surgery. I wanted to have the best possible outcome. I was born there and had some family still living there, although I now lived in the Vancouver area on the coast of British Columbia.
Early in 2007 I sent an e-mail stating my interest in having MVD surgery done by Dr. Anthony Kaufmann, a renowned Neurosurgeon specializing in Microvascular Decompression surgery, at Health Sciences Centre, Winnipeg, Manitoba. He is the Director of The Centre for Cranial Nerve Disorders (CCND) there. I had read up on all the information on this website http://www.umanitoba.ca/cranial_nerves/ccndhome.htm/ and/or http://www.umanitoba.ca/cranial_nerves/ccndhomenetscape.htm, / which included an interactive animated HFS (Hemifacial Spasm) tutorial, and dealt with understanding Hemifacial Spasm and its treatment options. Intraoperative monitoring information is given here as well at http://www.umanitoba.ca/cranial_nerves/intraoperative_monitoring/index.html
His nurse quickly contacted me and within a short period of time I was booked for MVD surgery on June 26, 2007. I had stopped Botox treatment in December 2006, which was one of the requirements before having MVD surgery. Dr. Kaufmann’s staff had sent instructions on what tests I had to have done beforehand, so before going to Winnipeg I had an MRI, blood tests, and heart monitoring done, and results sent to Winnipeg well before the time of surgery. The time went by fast and soon I was in Winnipeg awaiting surgery.
I met and talked with Dr. Kaufmann and it confirmed what I already knew, that I would be in the best possible hands for this type of brain surgery. The operation was without any serious complication and successful, and I recovered quickly.
Spasm Free:
All my research had paid off. Because of this doctor’s expertise, experience, and the use of Intraoperative Monitoring equipment, within three months after surgery, I became spasm free!
It is now October 19, 2007 and I have been "SPASM FREE" since mid-September. My smile is no longer a crooked one, and my eyes are back to normal. Thankfully, having Botox shots did not result in permanent damage to the facial muscles. It is no longer embarrassing to be in public. It is wonderful to finally be spasm free.
Thank You:
Permission granted the HFSA to post Personal HFS History on website.
Rose Marie Schmidt, October 20, 2007