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Posted by: Eileen Giddings ® 09/18/2002, 21:48:51 Author Profile Mail author |
I've had spasmodic torticollis since 1995, then in 1996 after a stressful situation at work, I got spasmodic dysphonia. I always though it was my fault because I let myself be stressed out. Then I went for speech therapy, physical therapy, psychiatrist therapy, then Luvox for a few years. Guess what? Nothing worked.I read Dr. Morton Coopers books. He was very against botox, thought he could fix it with voice rehabilitation. But he's in California and I'm in Boston. Duh? This year my voice has gotten much worse, I've resorted to whispering because my voice doesn't break up when I whisper. I finally went to a ENT at Mass Eye & Ear. Thank God. I had the botox yesterday. I'm in the breathy phase, but my voice seems to be better, less breaking up. I pray that it works, I don't want to have false hope. It's been so hard having this voice disorder. People always asking if I have a sore throat, can't understand what I'm saying on the phone, I sound like an old lady, I'm only 51. I used to sing the choir, forget it now: I sound across between kermit and fozzy bear. I'm afraid to talk almost. I feel like I have to learn to talk normal again if the botox works. I'm a wreck, but a positive wreck. |
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Posted by: Lib Haywood ® 09/19/2002, 07:19:33 Author Profile Mail author |
Eileen, we have all been through the frustration you are feeling. The first thing the doctor who diagnosed my SD told me was: "You have SD and it is not your fault." I think we all must feel that we did something wrong to cause it. I know Dr. Cooper feels he can cure SD by rehabilitation but he is very expensive and todate there is no cure for SD. I tried voice therapy for ten months and it did not help. You may learn some techniques that may help after you have BoTox. You may find that they have to experiment with different doseages of BoTox to arrive at the one that works best for you. Don't give up and keep a positive outlook. I was 57 when I was diagnosed and had never been sick in my life except for a virus now and then. It really zaps your self esteem when it hits but this BB is a great place for info and support. I did not have any of this when I started. I felt lost and floating in an unknown area. My support group has been my life line. I hope you can find one near you. |
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Posted by: george swift ® 09/19/2002, 23:29:46 Author Profile Mail author |
This my first posting to this great BB, as I just signed up a couple days ago. I've had AD for about 6 years. After my first failed Botox injection just after diagnosis, I swore not to go through that torture again. Then I came across this BB and read of other's failed attempts and not to give up. So after a year, and barely able to talk, I went back and have had great success since, lasting up to a year between injections. So don't give up. Also, on the subject of therapy, I tried the Alexander technique, which is in simple terms learning to relax, after my first failed shot. At the time, I didn't feel any real improvement or benefit, but now I think it helps me prolong the benefits of the Botox. After my first discovery of this site, for some reason I didn't come back until a few days ago. Glad I did, learning quite a lot. George Swift Sutter Creek Ca. |
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Posted by: Eileen Giddings ® 09/24/2002, 18:59:39 Author Profile Mail author |
My daughter had Alexander techniques for her left shoulder drooping from playing the viola. It did help her posture, but she quit the viola anyways. I've thought of getting Alexander technique for my torticollis. My head is pulled to the left. The same day I got botox for my voice, my doctor gave me botox for my neck also. It has helped me get to sleep alot better. Does anyone have an excess saliva problem? I seem to be swallowing all the time. I do have acid reflux in my throat, but since the botox injection I seem to have excess saliva. It was so hard not to swallow while I was getting the botox injection. Since then it seems that all I do is swallow. |
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