Posted by: Linda Mott ®
03/29/2005, 12:34:49
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Welcome Kelly Ann,
I've had ADSD for 30+ years. I am so glad you found the BB; educate yourself about your condiiton; there is a wealth of information here & you will make wondderful, new friends that can understand & support you in a different way than your other friends do. I received my first Botox injections in Jan. with good results, & I go back in April & he will increase my dose. I am so thankful you got diagnosed early; I was correctly diagnosed in 2004. Best Wishes,
Linda
ADSD 1973
B'ham, AL
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Posted by: keith ®
03/29/2005, 22:10:45
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Hi:
I've only had 2 botox injections since being diagnosed last September. I'm sorry to report that neither was effective. I had one on both sides. I actually didn't have as many open spasms, but also had less voice. I had a really bad experience with the first shot, and the second was done under general anesthesia. I am hesitant to try it again but would if someone could tell me that it would definitely help more than the previous 2 shots. I suppose I need to give it more of a chance but the first injection was so painful and went on for ever (like 45 minutes). The second shot was simply ridiculous since I spent literally all day in the hospital for a procedure that lasted 2 minutes. I wish you the best of luck with your botox. Let us know how it works out.
Keith
AB/SD
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Posted by: Linda Mott ®
03/30/2005, 07:24:26
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Keith, I had 14 injections (i also have cervical dystonia) I received 6 on my left side & 8 on the right side. Mine were painless; I am curious to know if you were hooked up to the machine with the electrodes placed on you & did u see a Movement Disorder Specialist or an ENT? Best Wishes,
linda ADSD/CD
B'ham, AL
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Posted by: keith ®
03/30/2005, 14:31:50
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Hi:
Yeah, I was hooked up to the machine that detects the muscle activity from the electrodes that were placed on my neck and forehead (if I recall correctly). The shots were administered by an ENT who is supposed to be very skilled in administering botox. Everytime she found the PCA muscle she was looking for, I inadvertently swallowed, thus causing her to lose both the spot where the needle should be as well as the reading on the machine. This went on for, as I said, about 45 minutes until the botox was actually administered. It was excruciating. After about 10-15 needle insertions into the throat it starts to sting a little bit. Glad to hear yours went better. Mine was a nightmare.
Keith
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Posted by: Ida Neary ®
03/30/2005, 16:02:51
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I am sorry that I can't comment on the effectiveness of Botox on AB as I have AD. However, I can suggest that the doctor deaden your throat before she administers the Botox. Usually my Botox shots were pretty easy and painless and I only had the swallowing problem when more deadening was needed.
Ida
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Posted by: David Barton ®
03/30/2005, 16:22:50
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An effective way of preventing, or at least discouraging, unwanted swallowing, is to place something like a pencil or popsicle stick horizontally across your mouth, so that it is placed hard against the corners (the two places where top lip meets bottom lip). Try this with your finger briefly - notice how you can't swallow.David Barton (AD/SD, Auckland, NZ)
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Posted by: Angie B ®
03/30/2005, 21:30:29
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Hi there,
I wish you luck with your Botox injections!! I am also ABSD.. and was diagonsed this past November.. I have been to speech therapy.. it didnt help me out too much and I was told y the ENT that Botox wouldnt be an option for me. I was told on a scale of 1~10.. my voice was a 2..and that I had a mild case.. I guess I should have been happy about that.. but to me.. I think I sound like crap..!! I have no medical insurance either!! I wish you the best with your injections.. Please let us know how they turn out!!!! You will find alot of support on this BB and make alot of new friends!!! Best of luck to you!!
~Angie~ ABSD from PA
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Posted by: Vici ®
03/31/2005, 07:46:59
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Hi! I have had ABSD since 2001. I was diagnosed at Mayo Clinic about six months later, but had already figured out what was wrong with my voice from the NSDA website. I've had three bi-lateral Botox injections. The first had a positive effect that only lasted about three days. The second and third had a negative effect, leaving my voice weaker and more breathy, so I have decided not to try it again and my doctors have concurred. I hope you're one of the seemingly few AB'ers that Botox works for! I wish you the best. ~Vici
Modified by Vici at Thu, Mar 31, 2005, 15:44:12
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Posted by: Mary Bifaro ®
04/01/2005, 12:36:14
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Dear Kelly Ann,Welcome to the SD bulletin board. I agree with the others that you will find a great deal of information and support here. I hope that you will consider joining the NSDA which sponsors this bulletin board. By sending in $ 35 for annual membership, members support the vital work of the NSDA. Since 1989, it has existed in order to provide education and research for our rare voice disorder. Its goals are to advance medical research, promote awareness and provide support to those affected by SD. Please refer to its website at: www.dysphonia.org for further details. On a personal note, I have had abductor SD since 1987. Botox injections did not improve my SD voice. Finding an SD support group and working in behalf of the NSDA community have brought me many blessings over the years. Good luck to you. Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: KellyAnn ®
04/01/2005, 15:53:24
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Hello Mary,I have already sent in my membership plus an additional donation. The NSDA website has given me valuable information and I will continue to support the organization. I actually have seen a slight improvement in my voice and if that's all I get, I'll be happy with that minor improvement, I was not expecting much anyway, but I still have hope. Kelly, AB, New Jersey
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Posted by: Mary Bifaro ®
04/01/2005, 18:53:13
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Dear Kelly,Glad to see that you are a member of the NSDA. Equally important, I'm happy that you "still have hope". Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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