Personal HFS History - Karen Spicola

My HFS experience began quite a long time ago, back in 1984. I had just turned 40 years old and was working as a realtor. I began noticing a twitch in my left eye and found it to be particularly bothersome when I was face to face with clients or in a stressful situation, which was quite often in the real estate business. After several months of putting up with the twitch I made an appointment with an ophthalmologist, who obviously didn't have a clue as to what was wrong and said he couldn't help me. So I just went about my business with an eye that wouldn't stop quivering. Slowly the twitch began melting down my face, causing my cheek and mouth to pull up. I began to worry that I might be dealing with a neurological ailment, so I went to a neurologist.

He had me undergo a MRI and EEG, both of which came back with normal results. I still wasn't given a diagnosis but the Doctor prescribed Dilantin, which had less than desirable effects, so he changed me to Tegretol and later to Neurontin. None of these did much to quiet the spasms and my husband complained that I wasn't acting like myself. So I discontinued taking them and was back to living life with a face that was in constant motion. One day, after twitching for over a year, I suddenly noticed that I wasn't twitching as often and finally, not at all. The dreaded twitch was GONE and I resumed my life, thinking I was finally finished with IT - whatever IT was. Little did I know then that in the course of the next 17 years, I would go in and out of remission every few months. Some of the remissions lasted up to a year but the spasms would always suddenly and unexplainably resume to their old form. I never figured out what caused the spasms to start or what made them stop. I was just unbelievably grateful when a remission would occur to give me a rest from the spasms.

In the course of the next 10 years I went to neurologists, dentists, chiropractors, acupuncturists, massage therapists and sometimes thought I saw some improvement in my condition. Finally I saw an ENT specialist, who took one look at me and told me I had hemifacial spasm and the options I had - live with it, Botox®, or brain surgery. At that time I had suffered with the disorder for about 12 years and was just grateful that someone could finally tell me what I had. I immediately started doing research on the condition and ultimately found the Circle of Friends support group on the Internet.

I was pretty much just a "lurker" on the support site for the first year but would find myself being "put off" by the talk of MVD's by so many of the participants. How could they actually encourage people to have such a serious surgery, which could cause so many horrible side effects? Unfortunately, my HFS symptoms seemed to be taking a new turn and had worsened to the point that the left side of my face was in almost constant contraction and my sleep was being interrupted several times each night with spasms. I knew I had to do something so I opted for Botox® injections.

The neurologist who injected me was very experienced and I felt little pain, but did end up with a black eye from a needle stick. The injections definitely put a lid on the spasms but, unfortunately, the left side of my face looked like I had suffered a stroke. After trying a second round of Botox®, with the same results, I decided I would have to look into the dreaded surgery because my quality of life was going down hill fast. At this time I started becoming a regular participant on the support group and paid close attention to what everyone was saying about MVD's and what physicians they were going to. After doing some very thorough homework, I opted to go to Dr. Amin Kassam and Dr. Michael Horowitz in Pittsburgh, Pa. I live in Colorado and have HMO Colorado Insurance, with a point of service rider. This rider allowed me to go out of network for surgery but I would have to pay a co-insurance. Lois Burkhart, Dr. Kassam's nurse, was instrumental in getting the insurance company to give me the O.K. for my surgery.

On May 10, 2001, seven months after my last Botox® injections, I had my MVD, with FANTASTIC RESULTS! I awakened in the recovery room without spasms and have remained "SPASM FREE" since that time. My hearing is intact and I didn't have severe vertigo or Bell's Palsy after the surgery. The surgery wasn't a lot of fun but the outcome was very much worth it. All in all, I couldn't be more pleased with the outcome and wish I had opted for surgery years ago. I'll be forever grateful to Drs. Kassam and Horowitz for their knowledge and talent and to UPMC for making my hospital stay as pleasant an experience as possible.

3 YEAR POST MVD UPDATE, May 10, 2004:

Today, May 10, 2004, I'm celebrating 3 years of being SPASM FREE. I was so very lucky to find Drs. Kassam and Horowitz when I needed them so very much. I had a textbook surgery and post-op period without any of the dreaded complications and best of all, woke up in recovery spasm free and have remained so to date. The first year or so after my MVD I thought of the spasms a lot and how lucky I was to be free of them. As time has passed I think of it rarely now but never fail to feel blessed to have had such great success with the surgery after 17 years of dealing with HFS.

It's amazing how much more enjoyable life is without those dreadful spasms.

Permission granted the HFSA to post Personal HFS History on website.
Karen Spicola, Updated May 10, 2004

 

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