Guest Speaker Ms. Melanie Fellowes
Ms. Fellowes began her talk with an explanation, in layman's terms, of what is entailed in a Microvascular Decompression (MVD) operation. Hemifacial Spasm is caused by a blood vessel that has taken a wrong turn in your head. The blood vessel impinges upon the seventh facial nerve and, as it pulsates, it manages to irritate the nerve. The longer the nerve is irritated the degree of facial spasm increases in intensity. What starts out as a mild spasm ends up as "full" spasm which visibly distorts or pulls on one side of your face.
In Melanie's case it started out as a little twitch under the eye that became more and more persistent and would not go away. From there it became a "clicking" in the ear, to a tugging of her mouth and progressed to her forehead and down the back of her head and neck. She had, to say the least, a severe case.
The surgery is simple to understand. Basically what happens is that the surgeon drills a hole into your head just behind your ear. All of your cerebral spinal fluid drips out and your brain sinks causing all of the nerves to be exposed. The entire surgery is done with the aid of microscopes. Essentially, they go into the specific area where the blood vessel and the seventh facial nerve touch and place Teflon pads between the affected nerve and the offending blood vessel. They put in as many pads as required to keep the nerve and blood vessel separated. Melanie has five such pads.
When the surgery is over they plug the hole with acrylic and stitch together the scalp. Dr. Anthony Kauffman performed the surgery in Winnipeg. Melanie flew in and the entire procedure (pre-operative consultation to post-operative care) was completed in a week. She was fully briefed as to what she might expect and was pleasantly surprised that she did not experience the majority of post-operative symptoms with the exception of a strong pain in the neck.
Dr. Kaufmann also explained that, although the source of irritation has been removed, the nerve was severely irritated it would take some time to heal. Melanie states that she still has a slight spasm around her mouth but other than that feels that she is recovering nicely and is 80 to 90 percent improved over her original condition.
About five to ten percent of those that undergo the MVD surgery will not be one hundred percent cured. At this stage Melanie is not sure if she's in that bracket. Her only regret is that she did not do it sooner because the affected nerve may have been less irritated and Melanie feels that she might have achieved a better result. Nevertheless, she can live her life in her current state: Melanie definitely has a better quality of life.
There were several key factors that contributed to her delay in opting for the MVD surgery after she had learned that this was an option. Primarily, she was a recent widow with two small children and she could not risk being totally incapacitated. She has since married. Another reason was that she has Multiple Sclerosis (MS) and the doctors, because of lesions in the brain, could not identify or see the compression of the seventh facial nerve from the many Magnetic Resonance Images (MRI) they had taken. Melanie went to Winnipeg not knowing if Dr. Anthony Kaufmann would be able to definitively confirm that she had a standard case of Hemifacial Spasm, or, was it an MS lesion so small that it was not showing up on the MRI and possibly the cause of the spasms. If it was the latter, then there was nothing that could be done. However, when she got to Winnipeg, Dr. Kaufmann viewed the MRI and knowing what he was looking for identified the decompression of the nerve immediately. Melanie was a candidate for the surgery.
What had prompted Melanie to think about surgery was a local newspaper article dated May 2000. She still has the article. The article detailed the fact that there was a doctor in Toronto that had performed an operation to relieve the spasms of a local woman. She read the article religiously, and, because of her MS, she visited neurologists on a regular basis and would discuss with them the contents of that article. They advised that it was risky to expose your brain for something they felt was a benign condition. She found it difficult to convince them that she had no quality of life. In fact, the combination of MS and spasms, that were becoming more pronounced as time passed, caused her to withdraw from attending many social functions.
In discussing the possibility of surgery with her husband they concluded that Melanie needed to find a surgeon that specialized in the field, and, unlike the surgeon in the article, one who performed more than five of these procedures a year. This meant, at the very least, going with the pioneer of this procedure, Dr. Peter Janetta of Pittsburgh. However, to do this, without the benefit of OHIP, would involve a horrendous financial burden. It was during this search that Melanie came to contact our support group through Fred Martin and ask for whatever help we could give her.
Fred suggested Dr. Anthony Kaufmann who had been a guest speaker at one of our earlier support meetings. Dr. Kaufmann, who studied under Dr. Janetta in Pittsburgh, heads The Centre for Cranial Nerve Disorders in Winnipeg. Dr. Kaufmann performs about three hundred operations a year on people who come to him from all over the world.
Melanie has never regretted her decision: even though it was a terrifying one to make.
Guest Speaker Dr. Martin Kazdan
Dr. Kazdan began his talk where Melanie left off. He explained that he had some patients that had undergone the surgery and they were still dependant on botulinum toxin injections to bring them the total relief they required. He asked Dr. Kraft to relate any experience that he might have had with the MVD procedure. In response, Dr. Kraft stated that in his practice he had four (4) patients undergo the surgery. For two of these patients the procedure did not work at all: neither the first or second time that they underwent the surgery. The procedure for these two patients was performed in Toronto. The third patient went to Pittsburgh to have it done by Dr. Peter Janetta and is happy with the results. The fourth patient went to Buffalo and was somewhat pleased with the result. Three of the four patients still require BOTOX® treatments.
Dr. Kraft further explained that, if a person who is young and/or in good health, he or she should investigate the surgical option for Hemifacial Spasm. However, he cautioned that the surgical procedure does involve the brain and specifically an area with an abundance of nerves and blood vessels, so it is not to be taken lightly.
Guest Speakers Fred & Hilda Martin
Fred Martin continued the meeting with his report on the 1st Annual Canadian Botulinum Toxin Conference, which he and Hilda attended, as the guests of Allergan Canada, at Mont Tremblant, Quebec. The conference was essentially for the Canadian Medical Profession and was sponsored by Allergan. There were guest-speakers from different parts of the globe.
Fred, until he attended the conference, had not realized how vast was the use of BOTOX® in the realm of pain: everything from simple muscle pain to the pain of migraines. For Fred this was an eye-opener.
Allergan Canada allowed the Foundation to have a booth at the convention and Hilda was our Hostess. The use of the booth gave the Foundation an opportunity to spread the word about its existence to all of the doctors in attendance. Allergan had invited only two Foundations: the Canadian BEB Foundation and the Dystonia Foundation. Jason Herod, Therapeutic Product Manager, BOTOX, Allergan Inc., and a guest speaker at our last meeting, introduced Fred and Hilda to a majority of doctors in attendance. Fred was also allowed to attend the general sessions.
On April 3, continued Fred, after a 7:30 AM breakfast, there were special optional sessions, which one may attend. These two hour-sessions were grouped under four specific areas. Fred and Hilda attended the "Movement Disorders" session which covered BEB, Meige and Hemifacial Spasm. Dr. Earl Consky, of Toronto, spoke on Blepharospasm. The session was extremely interesting although very technical in content. A good portion of the session dealt with the best "injection points" for BOTOX® in the various afflicted and related muscles.
From both a Foundation and personal perspective the attendance at the Conference was invaluable. Many of the doctors were unaware of the Foundation's existence and were pleased to find that this type of support for their patients existed. Fred went on to say that the amount of research that is currently going on with the use of BOTOX® is utterly amazing.
Hilda was especially pleased with the reception she received in handing out Foundation brochures. All doctors were both friendly and keenly interested in her history and promotion of the Foundation. She was extremely pleased with the amount of coverage we received.
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