Posted by: Nan ®
02/20/2006, 16:48:25
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I would think that one try with Botox certainly wouldn't be enough of an indicator to give up on it. I have been getting botox injections for ADSD 4 or 5 times a year since 1998, and I can tell you that there is a lot of variance in the results even in the same person. I have never had the exact situation that you describe, but I have had injections that simply did not work. I have also had injections that left me "breathy" for 6 weeks (but then lasted 6 months). I certainly am not the expert on this BB, but it sounds to me like either the injection was too weak (they often go light in the beginning) or was not in the right place. Sorry to hear about your initial results, but I would say keep trying! Imagine... another "Nan" with ADSD! Nan Lewis
Walls, MS
ADSD since 1998
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Posted by: Paula B ®
02/20/2006, 17:17:04
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Hi Nan,Welcome to this board, or site. You will gain much information, and even support here, glad you found it. :) I was diagnosed a year ago and also have ADSD. My first botox treatment didn't work either. It was too weak, or not enough to give me the effect it should. Everyone deals with botox differently, and as the other Nan said, each shot can be different for the same person also. To read about other treatments that people have tried, go to the top of this site and search the archives of past posts. Good Luck to you, If you have any more questions just ask, Paula (IL)
ADSD Feb 2005
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Posted by: kybutterfly ®
02/20/2006, 22:23:49
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Welcome to the bb and it will be very helpful for you. I just had my 2nd botox injection this past friday. My first injection was 2.5 bi-lateral and this time went to 2.0 bi-lat. The breathiness came much sooner this time. First injection had maybe 4 wks of breathiness followed by short period of good voice. I will remain optimist that with trial and error the correct doseage will be found. Please hang in there and give it several tries. These things sometimes take time. I know what its like to feel desperate and at wits end and I empathize with what you are feeling right now. Care to tell us what doseage your dr. used, just curious. Don't give up and keep us posted. Good luck!! Beth
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Posted by: mdubovick ®
02/20/2006, 22:50:46
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As others have mentioned, you can't draw complete conclusions from a single shot; however, if your first experience repeats itself, then the doctor's observation may be correct.Not sure about the Robitussin but I know people have benefitted from ALL the alternatives you mentioned. In addition, there are some that rely solely on prescription drugs such as Neurontin, Klonopin and other other choices. It seems that what helps one person does not help another. So there are no assurances any of the alternatives will help. Only trial and error will tell for certain.
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Posted by: nan g ®
02/21/2006, 05:54:20
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Thank you everyone for your replies. My doctor gave me a bilateral 2.5 dose of botox. His policy is to start everyone at this level and then adjust as necessary. At seeing me, at first he said he wouldn't recommend another round because he didn't think it made a difference (I was pretty stressed at his office, which makes my voice sound at its worst, especially after hearing what he had to say) but after speaking with me for a while, I sounded somewhat better. So perhaps the botox helped a little but not enough, and now my biggest fear is having to give up a career that I love because of the way I sound. Now he wants me to wait until I start to sound even worse (perhaps another two or three months) before scheduling another treatment. In the meantime, he wants me to see a top neurologist to make sure nothing else is going on, something I was supposed to have already done. He said he will also check with others in the community to see what they think.
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Posted by: lulamadden ®
02/21/2006, 14:03:14
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Nan -I have Mixed SD but I get injections for the AD part of my voice. I have the same problems you do with regards to my injections. I seem to get very tight spams almost immediately after my botox treatment, than the exteremly breathy stage happens with tight spasms showing from time to time and than I get an very weak okay voice after about a few weeks and then I get a very raspy voice, then the botox wears off. I am getting injection about every other month. My injections don't last as long as I would like nor as long as the doctors would like. I figure botox is trial and error. I think you have to try it a few more times to really decide if you think the outcome is worth it or not for you. I feel your furstaration but hang in there. Best of luck - Lula
MiXed SD
Sacramento, CA
Modified by lulamadden at Tue, Feb 21, 2006, 14:06:15
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Posted by: Barbara S. White ®
02/22/2006, 00:39:20
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I have AD SD but I have always had very good results from botox. In fact (unlike most, I had almost no breathy time) Maybe one day and than a completely normal voice for about three to four months. I did however request a larger dose once. Usually I have taken 1/2 unit in each cord. I requested 1 unit in each cord, thinking that would give me a longer period of good voice. The fact is it gave me a breathy voice (like you mention), couldn't swallow and lost my voice completely someimes but after about a month it was normal for about five months. What I am saying is that maybe the dosage is not right for you. Ask for a lesser amount. I finally had surgery 11/29/05 and have been extremely happy with that. It takes 5 to 6 months to get back to normal but after 2 1/2 months my voice is pretty good (not perfect yet) but good and getting better each day. (no sopasms at all) I understand that I should improve steadly for up to one year before I level off to my new voice. SLAD-R Surgery isn't for everyone but it worked for me. Surgery shouild be your last resort because it is not reversable. I went to Dr. Gerald Berke at UCLA Medical Center, the man who developed the surgery. I asked a lot of questions and took his advice very seriously, also checked with others who had the surgery before I made my decision. I had read the testamony of one man who had very negative results but than talked to two women who after five years still have wonderful voices. Please understand that I am not trying to talk you into surgery. You asked for alternatives to botox. I would have continued with botox if it hadn't been so inconvinent for me to get to the doctors that do it. For the time being, don't give up on botox. Maybe you just need a lesser amount of the toxin. Remember it was the double dose that gave me the same symptoms you say you have had. 1/2 unit worked perfect for me. We are each different and require different amounts. I heard of one man that had 10 units in each cord and that wasn't even enough to do the job so who knows. Just try different dosage and if that doesn't work, try a different doctor. Some a better than others. I have used two different doctors. My first doctor (was very good at UC Davis in Sacramento) but the procedure was very stressful. She gave me a shot in the nose, put a small camera down my nose and viewed my vocal cords on a monitor as she injected me in the neck. The second doctor (when I moved) just felt my neck and in 10 seconds or less injected me. It was simple and stressless and he never missed. I have been hearing of ZHT but don't know much about it. I had voice therapy but it didn't do much for me, don't know anythng about robitussim. A few people only get one cord injected and than a month late get the other one injected and it seems to work wonders for them. I think that the fact that you reacted to botox so quicklyi that it sounds like you need a smaller dose. Talk to him about that possibilit. I truly pray that you find an answer that will work well for you. Let me know.
Blessings, Barbara / gor4me@comcast.net
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Posted by: nan g ®
02/23/2006, 07:25:09
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Thank you for your response. Since all of this feels like it happened so suddenly I am forced to come to terms rather quickly. It's hard to know how to deal with this condition, especially professionally because I can't predict the future, how my voice will sound today, tomorrow, next week, next month, etc. It seems it takes an abundance of patience, especially since botox only made a minor difference (if any). The truth is I feel very alone, doctors don't necessarily have answers, my insurance coverage offers limited choices, I have to wait months before I can see a neurologist who specializes in this, yet I have to decide how to deal with this professionally now. I don't know if I can do my job and the stress of not knowing makes the situation worse. I will try acupunture but how do I find an acupuncturist who has experience with this condition. Do any of you know of one in New York City? I looked into ZHT but the few trained to perform the procedure are all located on the west coast, there are two local but apparently they did not want their names released. I guess all of us become our own doctors/researchers. I've done research on the internet and now wonder if I have ADSD and some other problem in addition and that is why the botox was not effective. If it's muscle tension dysphonia too, maybe speech therapy would help. But my ENT didn't mention that and I'm just guessing. I seem to be able to control it somewhat with breath but I can't carry on a normal conversation like that. It's all so frustrating and I'm venting. But at least that's tolerated on this forum.
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Posted by: mdubovick ®
02/23/2006, 21:26:13
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I looked on the NSDA web site under Support. New York City has an SD Support Group and the contact info. is below. You may get your answer to an acupuncturist in NYC as well as other alternatives. Hope it all works out - Mel D.NSDA SUPPORT GROUP INFORMATION
New York City Spasmodic Dysphonia Support Group
Adrienne Simons
tel: 718-793-2442
asimons@nopworld.com
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Posted by: nan g ®
02/28/2006, 09:56:52
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Thank you so much, Mel, for taking the time to do that. I am going to my first support group meeting tonight.
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