Botox® Experiences - Gail Moran

I have had HFS for 14 years. Started with a twitch in my left eye (sometimes right eye as well) and progressed down the left side of my face. My doctor said it was " Just a twitch". I was finally seen by a neurologist and diagnosed with HFS in 1994. The neurologist tried treating me with a mild tranquilizer, which relaxed me but didn't stop the spasms. Then I was given an MAOI inhibitor which I took one time, felt like I was having an out of body experience and decided this was not for me. I was also being treated by a chiropractor and receiving acupuncture from 1994-1997 which did relieve the symptoms somewhat in the beginning, but that did not last either. In conjunction with painful severe facial spasms, I also had unexplained jaw pain on the HFS side along with constant neck pain (spasm).

The neurologist referred me to the Movement Disorders Clinic at Colombia Presbyterian in NYC. I was given the option of Botox® or MVD. I was never told of the effects could have on a future MVD. I have been using Botox® since December 1996. I receive treatments every 3 months. Recently I have been receiving about 5 - 6 shots around the eye and 4 around the mouth. I receive two shots at the outside, side of the eye, two or three in the lower lid. Sometimes I receive a shot in the eyebrow and sometimes a shot near the inside corner on the upper lid. I have never experienced any adverse side affects from the shots around the eye; they actually work quite nicely. At times I can feel the muscles pulling, but the eye is pretty much open. I have learned to deal with HFS and went so many years with no treatment that I am very grateful for the Botox®.

I receive about 4 shots around the mouth, two below the lip, one above and one to the side. In the beginning I experienced a little lip weakness. It kind of felt like I just left the dentists office, like when your lip is numb and weak. Even now the left corner of my lip is a little bit lower when I smile. But this does not bother me - it is a fine trade off. I can still feel the contractions in the lower part of my face; they don't seem to ever go away. My neurologist explained to me that it is best to keep the shots in below the lip and in the lower eye lid - this is supposed to prevent anything from drooping too much (makes sense). I think the shots are somehow helping the pain I was feeling in my jaw, I don't know how but the almost constant pain/pressure in the jaw that I once felt seems to have dissipated with the onset of these treatments. My neck is also not as tight as it used to be since I started using the Botox®. I don't receive any shots in those two areas but somehow it is helping these other symptoms.

Right now I receive 48 units of fresh toxin every three months. I do not have to pay anything for the treatment. I have CIGNA PPO and my doctor is on the plan, it is treated as a procedure so I don't even have to pay my $15.00 co-payment. Out of pocket would cost $740 per visit, $500 for the doctor and $240 for the toxin. I noticed that last year I used 38 mu of the toxin. I haven't really been paying attention but I am going to start tracking this now and will post results and I go along. If you ever have any questions regarding my experience please feel free to contact me directly. For now I am happy with this treatment but I am only 30 years old and am fearful that at some point the Botox® will stop working.

Permission granted the HFSA to post Botox® Experience on website.
Gail Moran, October 14, 2001

 

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