Re: Confused on Botox treatments
Being new to SD and Botox, I don't have much information or answers. I have had two treatments, 1st one on 4/8, which did not work. 2nd one on 4/25 which has not kicked in yet, each was 3.0 units, TA, bilateral. Have read that Botox injections do not work as well for AB/SD, but also read if it is placed in another muscle which was mentioned in the BB, it works. Hope you have good luck with your treatment. Best Wishes, Rena AD/SD
--modified by Rena Haynes at Tue, Apr 30, 2002, 17:47:47The method is called Transcricoid. --modified by Rena Haynes at Tue, Apr 30, 2002, 17:51:10
Re: Confused on Botox treatments
Lu, if you review some of my postings you will see that I have AB and had Thyroplasty at Mayo. I have had two injections of Botox, 1.5 and 3.0 and neither of them worked. I am trying to schedule another appointment to get another boost on the Botox to see if that has an impact.HOWEVER, this does not mean that because mine did not work that yours won't. It is worth a try although Dr. Maragos is quite candid in indicating that Botox alone has not been very successful with AB. Go for it and keep us all posted on your progress. Good luck. John Comer ABSD Minnesota
Re: Confused on Botox treatments
Lu, I have been similarly seeking the experiences of AB folks. See my description of what has happened with me post-Botox#1 under an earlier thread on the BB dated today. I am being treated at Hopkins by Dr. Flint. I wenet into this knowing that I was going to give it at least 2 years of trials before deciding about sticking with the Botox, because each patient is a case study of 1: how much to inject, which side, both sides, how often... and our individual physiologies differ so that what else is going on with each of us does, I am sure, have an overall impact. One thing I have started doing is exercising, for the purpose of building up my strength. To me, the most disabling part of this disorder is the fatigue from the effort of talking. This has cut into my productivity -- I'm working and in the final year of a doctorate, and I'm way off track with where I wanted to be at this point because I just couldn't keep up the pace. I've gotten huge help and a great morale boost from a portable mic/amplifier (I have a Chattervox model, a fannypack design), so most of the time I am audible.
Feel free to get in touch off the BB if you want to -- I've been helped so much by the kind folks in this community. It has made me feel richly blessed, despite this condition that has changed my life. I find that I'm unable to feel despondent because I feel so well supported.
My very best wishes to you.
Linda Adamson
AB/SD, Annapolis MD
Re: Confused on Botox treatments
dear linda- i so want to go back to school and do a masters and doctorate in library science. it must be wonderful that you are that far along. I have been having a terrible time at work with trying to deal with sd and make a living. i know the botox i am on won't last forever and i want to find something i can do that will pay enough for me to be independent. the botox has worked for me so far. I have had 5 injections over the past year. best wishes cher
Re: Confused on Botox treatments
Thanks for your kind words, Cher. The issue of what I will do post-doctorate is very much an open one. I'm mentally exploring online teaching as one option; our division of education is doing more and more of this, and I might be able to shift more of my work to that arena where my disability would be not only invisible but also non-disabling. I'm going forward on faith that there will be a new "voice" for me eventually -- in one form or another.
Someone else on this BB has shared that he is exploring a new career as a sign language interpreter for the deaf. This might be the perfect fit job for SD folks: the deaf community couldn't hear us anyway, so the voice doesn't matter, and we can hear just fine, so the interpretation would work smoothly.
And I'll bet there is a niche of library science that would be perfect for you.
We all need to keep our chins up; all my best to you.
Linda Adamson
AB/SD, Annapolis MD
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