Welcome to the NSDA bulletin board. While having a diagnosis of SD is quite a challenge, it's great (key!) that you seem very willing to learn as much as you can about it. The best place to address your concerns about swallowing difficulties with botox may be with your doctor. Of course, this bulletin board can also provide a wealth of varying experiences from patients too, but it's often difficult to sort out what will apply and what will not apply to your specific case (especially when you are new to the community)

I know that slight swallowing difficulties can be an issue for some people with AD/SD after botox. and this could also be true (sorry, i don't know as much on this one) with AB/SD, but it is my understanding that these difficulties are not usually enough to warrant stopping treatment with the majority of patients (who only have SD, i do not speak for those with other neurological problems that can affect their swallowing abilities). do you know the cause of your current swallowing difficulties? i.e., is it the AB/SD itself?

i've only noticed swallowing difficulties with one of my botox treatments and while it was a little "annoying" (i.e., what it feels like when one accidentally lets water go down into the wrong pipe... which occasionally even happens in people without voice disorders!) it certainly did NOT translate to 1) not being able to swallow (not by any stretch), drink, or eat; 2) a dangerous problem; or 3) something that would ever lead to me (personally) to stop botox treatment.

but i have AD/SD so I know the experience is slightly different. by the same token, i think the potential swallowing difficulty side-effect (which for me only lasted a week and only happened once out of eleven injections) is most often talked about in relation to AD/SD patients. perhaps someone else on the BB with AB/SD (without other neurological problems influencing their swallowing abilities which could mislead you) could better respond to post-botox side effects with AB/SD and/or could correct my knowledge of this.

Since you are very eager to learn, perhaps you can attend the upcoming NSDA symposium in Washington, DC on March 8th. A detailed discussion of botox treatment will be presented by some of the top experts in this field. And questions from the audience are always encouraged at these symposiums. It's the place to be if you really want to learn plenty of important details about botox and the physiology of SD. Plus, you would also have the chance to meet several SD patients face-to-face and learn about their experiences. Symposiums are (by far) the place where I have learned the most about SD treatment. Part of that is because I like to "hear from the experts" in order to sort out (and significantly add to) what I can learn on-line.

Good luck in your initial experience with SD and its treatment. You've certainly found a great place to start learning.

(Laurie, NYC, AD/SD)