Personal HFS History - Brenda Hix
I believe my HFS started around October 1999. I didn't feel anything, but I saw a small vein below my right eye, a very tiny vein that was moving when I looked in the mirror. I thought it was odd, but did not worry about it. Then around January 2000 I began to get a tiny twitch around the corner of my right eye. The twitch would not go away, it was like a tick. I work in an office, and when I had to meet with clients my eye would twitch more. It was embarrassing, so I went to a doctor to see what it could be.
My Doctor ordered a MRI, which showed a small lesion on my brain. I was referred to a neurosurgeon who told me the tumor was diagnosed as a non-cancerous meingioma and could be treated with gamma knife surgery. He also said the facial movement I was having was not related to the tumor and I needed another surgery to treat the facial movement, which was minimal at the, still just a twitch of the right eye. I wasn't happy with his diagnosis, so I went to another neurosurgeon for a second opinion. This neurosurgeon said he did not agree with the other surgeon, he believed that the tumor was causing the twitch and wanted to do open brain surgery right away.
So, I went to a third doctor, a neurologist (not surgeon) and she said...do not listen to either doctor. She suggested gamma knife surgery (called a bloodless brain surgery done by radiation) to treat the tumor. So I had the Gamma knife surgery in 2000 followed by MRI's every 6 months. The third MRI showed another small lesion (not good news). I continued with MRI's for 2 years. The last MRI I had showed the tumors had decreased so small you can hardly see them!! (good news), but, my twitches are now full-blown spasms, and very embarrassing.
My neurologist who told me not to listen to the surgeons said I could be treated with Botox® injections. I said I am ready for anything that will help, so off I went for my first Botox® injection. My first experience with Botox® was like a miracle! The Botox® calmed my face and I felt like a "normal" person again!! I loved it! I continued with the injections for 2 years, the only problem is, now the Botox® is wearing off in two months not three and also, it isn't working like it did before. It seems the doctor can't get it right anymore. (I believe because my spasms are getting so much worse) My last few experiences with the injections were awful. In order to control my eye, he would give me too much, resulting in an eye that won't blink or close. I had to tape my eye shut to sleep at night. And when I got the injections around my mouth, I could not eat, the food just fell down my cheek. This is when I decided NO MORE BOTOX®, I am ready for surgery.
Through this beautiful site, I found THREE women right here in my town who were also researching Doctor's to do their MVD. One of the women, Ann Moore, just recently had her surgery, and is SPASM FREE! The other two will be having surgery pending insurance approval and I will be having my surgery on February 16, 2004. I will keep you posted with a MVD Diary.
I could not have done this or be where I am without the HFSA website and all of you wonderful people, who have shared your experience with me. You all are a God send and I can never thank you enough!
Permission granted the HFSA to post Personal HFS History on website.
Brenda Hix, February 29, 2004
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