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Posted by: uwe_berlin ® 11/23/2014, 11:54:37 |
I have symptoms of spasmodic dysphonia (AD-SD) for about 5 years and I receive Botox injections for the last 2,5 years. When they work well, I have a very breathy voice for about a month followed by a really good voice for 2 months. I typically get injections every 4 months. My doctor is an acclaimed surgeon and scientist (head of the ent department of a university clinic - probably one of the best in my country - Germany) and my personal impression of him is very good too. Only 50% of the injections however work well for me, while in the other cases he seems to miss the vocal fold muscles for various reasons: When injecting through the front of the neck, the EMG does not indicate the injection points well. They told me they only experienced that problem with me and otherwise with no other patient ... So the doctor actually gave up that procedure and changed to injecting with a long bent needle through the open mouth. This sometimes works well, but sometimes it makes me choke so that the procedure becomes impossible or again he misses the optimal injection points. If he misses the optimal injection points the effect is subsequently very limited. Success-rate about 50%. How are your experiences with botox injections? Modified by uwe_berlin at Sun, Nov 23, 2014, 15:53:00 |
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Posted by: Keith ® 11/23/2014, 17:58:55 |
I have had excellent results with my shots - basically 100% success once I was correctly titrated for the proper dosage. That being said, I have AB and so cannot speak for AD treatment. I've always heard though that AD is more easily and successfully treated with botox than is the case with AB, so with that level of success you might want to seek out another physician if one is available. Just because a doctor is a skilled surgeon and scientist, he may not be the most skilled at administering botox for SD. I also received treatment from a highly regarded physician and yet she was not able to help me. Best,
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Posted by: uwe_berlin ® 11/24/2014, 04:49:03 |
Hi Keith,
thank you very much for your answer. My doctor was specifically recommended to me for administering Botox for SD. But your answer definitely makes me think. May I ask you if receiving Botox injections is for you subjectively an "easy treatment"? For me it definitely isn't. So maybe it's me who makes the treatment so difficult. Kind regards, Uwe PS: Would love to hear experiences of others |
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Posted by: Keith ® 11/26/2014, 21:30:06 |
Hi Uwe, My answer to your question is a definite 'yes' - my procedures go smoothly, are not painful, and if all goes well they take about 15 minutes and done. I feel practically nothing during the actual injection because my doctor numbs both the inside and outside of the throat as well as the nasal passage where the scope is passed through. I am sorry to hear that it is not an 'easy treatment' for you. Keith |
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Posted by: uwe_berlin ® 11/30/2014, 15:00:59 |
Hi Keith, I am totally puzzled how easy and reliable your injections seem to be. Yet with AB it should be much more difficult ... Thank you very much for your answers. Kind regards,
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Posted by: Keith ® 12/05/2014, 21:56:20 |
Hi Uwe, AB is indeed more difficult to treat, but I am very blessed to have an excellent physician who is highly skilled at administering botox. |
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Posted by: nada23 ® 11/25/2014, 09:03:20 |
I've been getting botox since March 2013 for AD. Where I go, you can only get botox every three months, but I've had pretty good results. My ENT doctor gives the shots but a neurologist tells him the spot to hit. Each time is totally different. One time I might be hoarse for a few days but my voice is strong (no chopping words). Another time I might be hoarse for weeks and then talk normal until I go back. I would like to hear from other people as well. I am in North Carolina. |
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Posted by: Liliana ® 11/27/2014, 22:11:29 |
Uwe, your question is the essence of mine as well. I have AD SD. I have had only one injection so far but have been disappointed with the results. At the same time that my breathy voice gave way to a more normal voice the halting quality also returned. Now two months after the shot my voice is just as bad as it was without Botox. However, when the the injection was working, even though it didn't remove all of the symptoms all of the time, I did have a marked improvement. One person told me that I was easier to understand. Another said it was a 70% improvement. I am learning from you and others that doctors cannot place the shot accurately every time and I have figured out that my dosage will probably need to be increased. I also need to learn (through experience) what is a realistic result. I was hoping for my old voice back--and being able to sing again. Perhaps that is too much. |
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Posted by: JanB ® 12/02/2014, 14:24:12 |
Thankfully, my Botox injections have been very reliable -- maybe 85% to 90%. When they are effective, I have a near-normal voice. The improvement usually begins within a couple of days after the injection. I, too, have the AD form of SD (have had it for about 20 years, I think). I've been going to Dr. Berke at UCLA since January of 2012. Dr. Berke sometimes uses a scope in order to locate the correct spot for the needle; he always injects through the front of the neck. Every once in a while, the Botox doesn't work very well and my voice remains slightly hoarse and/or weak. (It's never breathy.) I assume that the problem is that the needle was slightly misplaced, although presumably there could be other reasons why a particular shot isn't as effective as usual. Incidentally, as I have mentioned before, Dr. Berke is known for using very low doses of Botox. I would not want to increase the dosage because, from what I have read, higher doses can exacerbate and prolong side effects (a period of hoarseness or breathiness immediately after the injection). The low dose -- I believe he's currently using 1/16 of a unit -- works well for me, especially now that I am receiving unilateral injections. If memory serves, we started with 1/8 of a unit and he gave me bilateral injections the first two or three times. I typically get the shots every 3 months or so. Might be able to go a little longer without them, but I don't want to lose my voice entirely since I am a software trainer and I rely heavily on my voice (for teaching and individual tutoring, as well as phone support). Hope this is helpful to you.
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Posted by: Alison ® 12/02/2014, 21:24:14 |
I am also a patient of Dr. Berke and he has been treating my AD SD for 9 years. I receive 1/3 unit bilaterally and have had positive results almost immediately most of the time, including significant lessening of tremor which I have along with the SD. My most recent injections about 3 weeks ago have been quite different. I had good voice for one day and then almost voice less since. Very hoarse and difficulty talking at all. I've had a similar reaction once before a long time ago but then I was able to whisper and be understood. I can't explain the difference this time. Try to be patient and hang in there. I know that's easier said than done. |
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