Personal HFS History - Sue Nofi
So here's my story................
About 24 years ago I started to experience a twitching in my left eye, which at the time didn't concern me as I thought perhaps it was stress, being tired, etc. As time went on it got more
intense and started moving down my face. That's when a very frustrating time in my life began. For 7 years doctors tried to help me and a lot of tests were done with no results. On the one hand I was happy that it wasn't anything serious, but on the other, disappointed that I still had no answer.
When they couldn't find a physical cause, they went the psychological route with therapy, antidepressants and muscle relaxants, all of which proved fruitless.
Through a friend, I was told about a doctor in Stamford who had operated on a friend of hers and from what she was telling me it sounded like what I had. We visited this doctor and
for the first time I had a name to go along with my problem, Hemifacial Spasm (HFS). I was so desperate to stop it that after talking to him we decided to go ahead with surgery. The sad fact was that he had knowledge of HFS, but not much experience in the Microvascular Decompression (MVD) surgery that needed to be done. I ended up coming out of it paralyzed on my left side (I still have some numbness in my left leg) and my heart was going crazy. As awful as this sounds I still held on to the thought that my face would be calm. My face was still active, but the doctor kept reassuring me that it would stop in time and that I would walk again. After a 21-day stay at the hospital I went home to my family in worse shape than before I had left.
I had therapy for a long time and YES I did walk again, but my face was still a mess. I knew of Dr. Peter Jannetta, but we opted for the doctor in Stamford as it was closer to home and I had 3 young children. A year later we did take a ride to see Dr. Jannetta for a consultation, but there was no way that I would let him touch me at that point. To make a long story short in 1985 I had a second MVD, this time with Dr. Jannetta, and it WORKED! I was the star patient and for all that went wrong the first time, everything went right this time and I was "SPASM FREE".
So my friends.............. for 10 years I was spasm free! The down side to my story is that they've started up again. I'm at a crossroad in my life where I need to decide what I'm going to do. I have sooooooooo much to live for that I'm terrified to go in for the procedure again and things not going well and to end up in bad shape. But when I have real bad days, I find them maddening and I start to think perhaps I could do this again. I'm a very friendly individual and smile a lot and as you well know the darn face starts to do its nasty thing. I know you all know that it isn't just vanity that there is so much more to these stupid spasms. On days when they are not as bad, I'm thankful that I was free of them for 10 years and it's not a terminal illness. Then on the other hand when they're doing their thing I
say DAMN!
On February 7, 2002 while talking to my daughter about things in general, I mentioned that I hadn't slept well the night before (which is not unusual for me) and that my face was going crazy as well. And all of a sudden I started to cry and while listening to me she went on line and found this wonderful group. I can't begin to tell you how wonderful it was to go to the website and read about others who had the same problem that I have. It has been a very lonely journey for me even though I have a loving and supportive family.
Anyway, I thank you all for letting me ramble on and on. I'm looking forward to keeping in touch with all of you. Can't tell you what comfort this support group has brought me already just to know that I'm not alone and to have found people that have walked and are walking in my shoes.
Take care!
Love,
Sue
Permission granted the HFSA to post Personal HFS History on website.
Sue Nofi, February 16, 2002
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