Botox® Experiences - Anna Griswold

My left eye began to have an occasional tic in 1994 as noted by my Opthamologist. Eventually, the tic began to occur more and more frequently at which point he diagnosed the Hemifacial Spasm and told me about Dr. Peter Jannetta and the Benign Essential Blepharospasm Research Foundation. He also told me about Botox® treatments, which he himself was giving to many of his patients, and about MVD, the surgical option. I received no information about any potentially negative effects of the Botox® injections.

The Botox® injections began in 1998. Initially, it took me a week or more for my eye to get accustomed to the shots. It is hard to describe how I felt. It felt like I could not see as well. My contact lens did not lodge as well in my eye. The twitches took awhile to subside. This physician scheduled me about every 6 months. The main twitching occurred around my eye but he began to notice that my left cheek was beginning to twitch very slightly, so he injected it also.

Eventually, this physician's practice no longer was willing to accept my Tricare insurance. I was very nervous because no one accepted the insurance. I contacted Tricare and eventually made my way to a man who negotiates contracts with physicians. He worked it out so that I could see another physician as long as I had a disorder needing regular treatment.

I began to see this doctor who scheduled his patients every 3 months. It seemed like my eye no longer took over a week to get used to the Botox®. However, at some point I began to notice that my left eye appeared larger than the right eye. Another doctor who filled in for the first physician at one point had noticed this. This doctor had referred me for a brain scan to see if I had a tumor. When I began to be bothered by the discrepancy between both eyes and questioned whether it could be due to Botox®, my physician told me "No" that most patients complain of the opposite problem. I feel terribly naive now but I underwent plastic surgery trying to fix this problem and now I know it was due to the Botox®.

Eventually, I got a videotape of Dr. Jannetta talking to one of his patients about MVD and her experiences. On this tape, Dr. Jannetta mentioned some long-term negative effects of Botox® treatments. At that point, I decided that I would never have another shot of Botox®.

In September 2002 I went to visit Dr. Jannetta to discuss possible surgery. He confirmed that my wide eye was a result of Botox® treatments. At this point, I hope to have the MVD surgery in December, 2002.

I believe that my HFS has not progressed to the most severe stages. My experience with HFS has been over a long period of time but the spasms occur in a completely random fashion. Usually, they go away quickly although occasionally I'll have a really bad day with lots of spasms. It looks like a partial wink. There is some feeling of my cheek drawing up on rare occasions.

Please feel free to contact me if you have questions or any need to discuss your experience with me.

Permission granted the HFSA to post Botox® Experience on website.
Anna Griswold, October 7, 2002

 

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