Personal HFS History - Paula Jackson

I spent many years not knowing what was wrong with me. Around 1986 it started with my left eye twitching. As time went on my cheek was pulled up when the eye twitched. I also noticed them becoming more like spasms. Later the spasms included the left side of my mouth and they lasted longer. All along, my family doctor couldn’t figure out what it was. He sent me for a MRI, which showed nothing abnormal. He then sent me to an Ophthalmologist, who also didn’t know what it was and on and on it went. I tried Yoga and felt a little more relaxed but it did nothing for the spasms. I tried not drinking caffeine, or wearing contact lenses, or sleeping in different positions, but nothing helped. Finally I just gave up and figured it was just some quirky thing I would have to live with. I still went to work each day and enjoyed volunteering with Girl Guides of Canada. I tried everything I could think of to hide the spasms but it was now impossible. Other than close family I never talked about it with anyone (which I now regret). I knew others recognized something was wrong but they never asked and I, not knowing what it was, never volunteered any information. Children, in their honesty, did ask however, so I was often reminded that I couldn’t hide it anymore. I truthfully thought that I was handling the condition pretty good but now I realize that deep down I wasn’t. I was becoming more withdrawn and over time my confidence level plummeted.

In 2002, I changed to a new family doctor. I was there for my first visit check up when she walked in, took one look at me, and said, “I can fix that”. I said, “Fix what?” “Your face” she said. I broke down crying. I couldn’t believe that after years of not knowing what was wrong with me that finally someone knew what it was and that it had a name!

I was sent to a Neurologist who confirmed Left Hemifacial Spasm and he told me the three common ways of dealing with it. Botox, which he administers and favors, medication that his experience had shown seldom worked, or MVD surgery that he strongly discouraged, due to the risks involved. I was so overwhelmed that I told him I’d have to go home and think about what I wanted to do.

I went home and typed Hemifacial spasm in Google, and I found this support group almost immediately. I will never forget seeing the first pictures I found on the site. I knew I couldn’t have been the only one with a twisted face but actually seeing others with it made me feel like I wasn’t alone anymore. For a long time I just browsed the e-mails and took as much in as I could. Many postings helped me laugh at myself and cope with HFS and even gain some confidence back. Then I took the first step to post and felt so welcomed by the members. Members never urged me to pick any type of treatment or surgery. They just provided information, their stories, and lots of caring e-mails.

When looking at the before/after pictures on the site, I became interested in finding out more about the surgery my Neurologist was so against. I started reading all the diaries and HFS histories and any articles I could get my hands on. Not all MVDs were successful, not all were without serious complications that frightened me, but many people did come through it with only a few obstacles and they were spasm free! I went on a quest to find out how to increase the odds of giving myself a chance at not only having a safe surgery, with few complications, but the best possibility of becoming spasm free. I believed that I needed someone who performed the surgery on a regular basis and who used the intra-operative monitoring I kept hearing about. I decided to purchase the HFS videotapes to see if there would be useful information on them. I was shocked at the quality and quantity of information on those tapes and it was great to actually see these wonderful surgeons and put faces to some of the members in our group. Viewing them confirmed I was making the right decision for me, but that I had to be cautious about who I chose to perform it and make sure that intra-operative monitoring was used. .

I decided I wanted to go to Pittsburgh to have the surgery done by Dr. Amin Kassam. I was in touch with a couple of other Canadians that had the surgery there and was told that our health plan covered it. It’s only a six-hour drive (I’m scared to fly) so it would be manageable. I contacted Dr. Kassam’s office and they mailed me information. I asked my Neurologist to apply to OHIP for out of country coverage, which he did. He was still concerned that I was opting for surgery though. I was turned down by the board and devastated. I appealed and spent a lot of time writing and copying articles, compiling pictures etc. but again I was turned down. I reached out to the group and a member wrote to me and asked if I had considered a Canadian surgeon in Winnipeg who performs this surgery regularly. He was trained in Pittsburgh under Dr. Peter Jannetta who pioneered the surgery. I had, but it would mean flying and that gave me more anxiety then the surgery! However, I got in touch with Dr. Kaufmann to see if OHIP would cover the cost of out of Province surgery. He wrote back to say that Canadians can choose the surgeon they want and the Province they want to have surgery in, and the costs would be covered (except transportation & accommodation). Soon after, I asked if he would consider me for surgery and the answer was yes! I was surprised when I heard that the surgery date was only six weeks away! Now I had to figure out how to get there without having to fly. My husband wasn’t keen on driving such a long distance and suggested taking the train out to Winnipeg. I had never thought about that before.

We made the trip to Winnipeg and I had the surgery on October 26, 2004. It was a very positive experience. I am now back home and "SPASM FREE"!

 

For details of my MVD surgery see my MVD Diary.

Permission granted the HFSA to post Personal HFS History on website.
Paula Jackson, November 22, 2004

 

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