Posted by: Esta ®
04/10/2008, 09:43:28
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I was diagnosed with AD/SD Feb 2006. I tried acupuncture for about 2 months but couldn't really see much change. Cost also became a factor in not continuing the acupuncture.
I wish you well and hope it works for you.
Esta
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Posted by: hoarse whisperer ®
04/11/2008, 02:25:03
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I tried acupuncture. I went for about three sessions and then appreciated her honestly when she told me that she didn't think there was anything they could do for me.Lori
AB/SD and VCD since 2003
Dallas, TX
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Posted by: Gary Lea ®
04/19/2008, 14:26:18
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Since being Dx in 1992 I tried three different acupuncturists, one caucasian and two Chinese trained in China. I also tried some funky Chinese herbs but alas no real effect on my SD. There was an article a 3 - 4 years ago (??) on the BB about an acupuncturist in the US who devised a protocol for SD and there were some reported successes. If you search the archives about 3 to 4 yeas ago you might find it.Gary Lea
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Posted by: Lib Haywood ®
04/15/2008, 14:50:58
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I have had AD/SD since 1987 and have tried a number of things trying to overcome SD. I tried acupuncture for several years. Unfortunately, the acupuncturist was two hours away so I had two hours over, hour treatment, lunch and two hours back. I felt wonderful after the treatment and my voice was better for a short while after each treatment. I did this for a couple of years and then gave it up because the insurance did not cover it and the full day of travel was too much. I did try another acupuncturist closer to home but the person did not seem to understand my problem and I gave up after a couple of months.We have a couple of women in our support group who went to the same one I went to. I have lost touch with one of them but the other one switch to a acupuncturist closer to home. She has had many treatments and stopped taking BoTox. At first she went a couple of times a week, then every week, later every month. The last time I talked with her she was going once every six months and was maintaining a good voice with no BoTox. You do have to find someone who completely understand your problem. My acupuncturist put needles in over my entire body. I felt wonderful when she finished. It was well worth the money but unfortuantely it did not permanently change my voice.
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Posted by: nan g ®
04/11/2008, 19:54:11
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Unfortunately, along with the others who responded, I too had no success. I tried acupuncture after my first botox treatment failed. I was hoping for a miracle, or at least some improvement, but no such luck, there was no difference at all. As I recall, I had at least 7 or so treatments and was also taking some Chinese herbs that were prescribed at the time. After spending quite a bit of money, I decided to throw in the towel. Luckily, botox now works for me and is covered by health insurance (acupuncture was not). Are you getting botox on both sides or just one? Maybe you should try unilateral, if you haven't already? Nan
AD/SD Dec 12, 2005
Modified by nan g at Fri, Apr 11, 2008, 19:55:46
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Posted by: hopefull ®
04/11/2008, 21:20:51
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I just had my first acupuncture session this week. I am mostly going for relaxation! I tend to hold a lot of stress and tension in my neck and shoulders which causes a bit of discomfort and headaches! I figured that being more relaxed (especially around that area) can only be good for me. I don't think it will help the SD too much but if it does I will let you all know! My doctor said I may have a combination of SD and MTD as the symptoms used to be a lot worse when they first appeared (which was a stressful time in my life) I recently had my first botox injection which worked! So I guess I can't measure if acupuncture has been helpful until the botox wears off.
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Posted by: Ingvar Andersson ®
04/19/2008, 02:38:13
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Hi,
Have you tried a lower dose than 0.2 U per cord to avoid loss of voice?
The key document on bilateral treatment (Advances in Neurology, Volume 78) "Laryngeal Dystonia: Observations of 901 Patients and Treatment with Botulinum Toxin" mentions that the authors Brin and Blitzer for some patients used "doses as low as 0.1 U/0.1 mL injected into each TA muscle". I have used 0.2 U/0.1 mL for many years and my MD says he has one patient on 0.1 U/0.1 mL.
Ingvar Andersson, ADSD, Malmö, Sweden
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Posted by: leealcott ®
04/20/2008, 19:41:06
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Thank you very much. I have wondered about using an even lower dose but have no heard of anyone going this low. When you go this low, do you still lose your voice?
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Posted by: Ingvar Andersson ®
04/22/2008, 08:31:19
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I had many years with 0.2 U/0.1 mL in each cord and got an acceptable weakness in my cords. I did not lose my voice. If I got 0.5 U/0.1 mL I lost my voice for 5 weeks and could only whisper. Acceptable weakness means for me that I do not visit the noisy restaurant for a week or two around peak effect, which is 10 days after injection. If I try to raise my voice in the noisy restaurant, it results in a whisper. There is a dose for you that gives you a weak voice similar to your situation at the end of your 2-3 week period of lost voice. I guess that your right dose is in the range 0.13-0.17 U/0.1 mL. I hope you have an MD who is very accurate in dose preparation and needle handling. If you select too low a dose you will get a shortened benefit period.
Ingvar Andersson, ADSD, Malmö, Sweden
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Posted by: lrichan ®
04/21/2008, 14:52:45
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I have had SD for about 3 years but just got diagnosed 6 weeks ago. They tell me I have a mild case (but it sure doesn't feel like it!) I have been having an acupuncture treatment weekly ever since the diagnoses. The last 2 weeks my voice has been consistently fluent. I am lucky because my primary care doctor happens to be an acupuncturist, so insurance pays for it. I do think it is making a difference. Having said that...I should also say that I am taking many other measures to improve my health in general including diet, breathing exercises, relaxation, meditation, emotional release etc. But I've been doing that for quite some time and haven't seen the noticeable difference that I'm seeing with acupuncture. I do think going the holistic route requires diligence and a broad approach. But I'm optimistic!Lori
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