Posted by: hoarse whisperer ®
03/13/2009, 19:12:20
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There are no permanent side effects with Botox. For better or worse, Botox always wears off within 3-4 months. If you have ADSD, you have an excellent chance of getting really good results. Go for it!Lori
ABSD since 2003
North Texas Support Group
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Posted by: TomVA ®
05/01/2009, 17:11:10
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Hi Lori,
I met you at the Symposium in Charlotte. We were sitting beside one another at Saturday morning's presentations. I've had ABSD for about a year. Let's compare notes on Botox for ABSD. I have had just one Botox injection. It just happened to be the day before I met you in Charlotte. I can't remember how much it was, but I'll find out and let you know. Anyway, the Botox did not help at all. If anything, it made it worse! In fact, I was talking very much better the day I got the injection and throughout that weekend, but after another day or two, it seemed like my voice got much worse. Strangely, it seemed like I had the post Botox treatment symptoms that are described for ADSD (more breathy). I would have thought the post Botox treatment symptoms for ABSD would have been just the opposite (like more choked off). I definitely didn't have the trouble inhaling fluids when trying to drink that I've heard described. I'm wondering if the injection was put in the wrong muscle! Does any of this compare to your experience? Have you had any success with Botox?
BTW, I love your username, haha!Tom from Virginia
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Posted by: Dolores Renz ®
03/13/2009, 22:01:19
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Hi Kent! I can only tell you that I have ADSD and have been having the BOTOX shots for two years now - Once every 3, possibly 4 months. It works wonders for me. I have some mild side effects (difficulty swallowing liquids for 3 or 4 days - which I handle by sipping from a straw, slowly, with my head down - and that works for me!) Also, my voice is a tad high for maybe 10 days or so (call it my helium voice) but then that disappears and I talk like a regular (non SD) person for the next couple of months!!! I receive .85 on each side and, tho' a relatively low dosage, that works for me! But everybody is different. I'd say "go for it!"
Dolores
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Posted by: kent ®
03/14/2009, 09:10:23
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Thank you Lori and Dolores. I am going to go ahead with the injection sometime in April. I would like to schedule it so I've a week or two open with nothing special going on. Just in case! My doctor suggested 1.25 units bilaterally. I am going to request that he reduce it to under 1 unit. I'll post the results afterward.
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Posted by: chokedup ®
03/17/2009, 15:41:36
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I do not believe that anyone can definitively speak to the long-term effects of Botox as it's only been about 20-some years since the first person was injected for a dystonia.
I, too, worry about this since I'm in my 30's and have a long (hopefully!) road ahead.
That said, we all have to live in the here-and-now. So, I do a cost-benefit analysis from that perspective and the answer comes very easy-- my life is far and away higher quality for receiving Botox.
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Posted by: lorib724 ®
03/17/2009, 20:33:17
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I get 1.25 unilaterally for moderate SD too. It works perfectly and I have very little side effects. The only thing I wish I knew about ahead of time is that I can't sing anymore. I really miss singing!! I actually would have preferred trying the Thyroplasty 2 before trying botox. I didn't know it was an option. But, the botox works. :) Lori B.
ADSD 3yrs
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Posted by: Shelley Ann ®
03/19/2009, 17:55:35
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What is Thyroplasty 2???
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Posted by: Shelley Ann ®
03/19/2009, 18:10:11
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I had injections of Botox on November 15, the first and last time I will do this. I was originally diagnosed with SD and MTD. I completely lost my voice for 10 weeks (was given 2.5 units on each side), which was way too much for me. However, I developed shortness of breath in January, so went to see my ENT who diagnosed me with SD. He could not offer me a reason. I found a new ENT and who specialized in vocal cord disorders and he told me I did not have SD, but Vocal Cord Dysfunction with paradoxical vocal cord strider..the two go hand in hand from what he explained. He said the treatment is speech therapy by a voice disorder specialist and psychotherapy (to learn relaxation techniques.) He said this is very effective. I began seeing the speech therapist he recommended and on the first visit she explained that acid reflux is often the culprit for Vocal Cord Dysfunction...acid gets into the vocal cords and surrounding muscles and they go into spasms in response to the acid that should not be there (usually at night while sleeping). I went to my gastroenterologist who confirmed I had "silent reflux" and I'm being treated for this now, along with the therapies. I was told that often VCD is often misdiagnosed for SD (as in my case.) I believe it's always in our best interest to get a 2nd opinion from specialists in this particular specialized field of vocal cord disorders. Speech therapy is amazing and has brought my voice back out. I have to practice daily to "retrain my brain" to project with air when I speak, but it is effective.
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Posted by: slkoko ®
03/19/2009, 18:37:09
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After many years of botox treatments for ADSD, I will always recommend someone to go for the injections. I have never heard of any permanent side effects or have had any and I have had about 70 injections. The relief you feel finally sounding like a normal person changes your whole outlook. All I can recommend is don't get to small a dose or to large a dose. My SD is considered mild also and I started with 1.5 bilaterally and was amazed at the change. Now after 16 years of injections, my 1.5 didn't work 2 months ago and we will push it up to 2.0. I am seriously considering the surgery, as I need my voice for work. Funny thing is I work for a large HMO but luckily they cover it. Good Luck, you will be very happy. I do take a Valium first to relax, sit up in the chair, no freezing, and he injects one side then the other; over within 2 minutes. Results don't show up till about 2 days.
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Posted by: kent ®
03/20/2009, 18:49:39
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Thanks "slkoko" for your comments. Based on what you write, 1.25 units bilaterally for my first injections, does seem like a good start. The doctor mentioned that it normally takes 3 to 4 tries before settling on the right amount."Lori B" I've never been able to sing so luckily I don't have to worry about that side effect. Shelley Ann- In last 4 years, my voice disorder has been diagnosed as the result of essential voice tremor, asthma, acid reflux and finally ADSD. The SD diagnosis came from an otolaryngologist at the Mayo clinic. It was later confirmed by a doctor in Milwaukee. I believe that it matches my symptoms. However if the botox does not work then I'll have to look for some other cause for the disorder.
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