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Posted by: vici forsyth ® 01/27/2003, 16:54:52 Author Profile Mail author |
Two weeks ago today I saw Dr. Bastian at Loyola for AB bilateral botox injections. As I posted earlier, on the third day after the injections I had pretty good voice. Unfortunately, those results did not last. My voice was pretty good for four or five days and gradually deteriorated until it is now as it was before the Botox. Shortness of breath lasted a little longer than my good voice did. I talked to Dr. Bastian today. He said my results were atypical, but told me of others who also had atypical results the first time and then went on to have subsequent good results. He encouraged me to follow through with at least 3 injections which I plan to do. I will wait, though, until my insurance pays for the last injection just to make sure they will cover my treatment. I still recommend Dr. Bastian very highly. He is an experienced, caring physician and an ally with us in finding successful treatment. This just reinforces what we with SD already know--each of us is different and respond differently to treatment. I'll keep you updated. Thanks to all who have encouraged me! Vici ABSD w/tremor, Illinois |
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Posted by: Katrina Lantz ® 01/28/2003, 18:19:43 Author Profile Mail author |
Hi Vici, Yes I would go for the other injections. I believe my voice wasn't that greaat after the first round but has improved over the past 2 years. Good luck, Katrina AB/ Tucson |
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Posted by: Robin Stull ® 01/29/2003, 01:56:57 Author Profile Mail author |
Vici - Sounds like you are keeping a good head about this. I know I was so disappointed after my first shot apparently didn't take. In my case (as you may know?) the first shot took 2 months to kick in - and then I had very good results. (I had bilateral shots - 1 unit left, 5 units right.) Since then I've had 2 more shots - approx 3-4 months apart - and my voice has been very functional. I hope you have no problems with your insurance! I wish you well, Robin (AB, So. Calif.) |
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Posted by: Linda S. Adamson ® 02/03/2003, 13:25:13 Author Profile Mail author |
We all get different results -- from each other, and from one injection to the next sometimes. That's been my own experience: 3 weeks of normal voice after the first pair of shots (7.5 R, 2.5 L) -- but haven't recaptured the good results since then. But I haven't given up yet because there are just so many variables. I encourage folks whose dr. is good at giving the injections to keep at it long enough to feel you have given it a chance. Even if I wind up stopping, I know that the knowledge base does keep expanding little by little, so I would plan to jump back into it later when more has been learned. I really am convinced I'll live to see "The Fix."
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Posted by: sarah bayle ® 02/03/2003, 20:33:49 Author Profile Mail author |
Linda, I've heard you say that before: that you believe there is a "fix" in sight. I'm curious about your belief.... (I'd like to have some for myself!) Are you thinking a cure, a treatment, a prevention, symptomatic relief or what? I've just been so frustrated lately that I felt like having something to look forward to...... Are you serious? Sarah AB/AD |
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Posted by: John Comer ® 02/12/2003, 20:05:58 Author Profile Mail author |
I don't think a "fix" as a cure all is in sight. I think that Linda is talking about all the variables related to the injection hitting its target and in the proper amounts, bilaterally or unilaterally. I think it is very difficult to expect that this will work without significant trial and error. It is frustrating for all of us and patience is needed. I have had Type I Thyroplasty and four doses of Botox. To date I have not really had any improvement. I am now trying to get included in the NIH study to see what they can learn to try to benefit all of us. Patience is the key. In my view there is no likely to be a universal "fix" in the near term. I think the more we learn individually and the more we communicate with each other...and then with our Drs....the more they will learn and the better off we will all be in the long run. John ABSD |
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