I've had AB SD since 1991, but had my first Botox in '98 or so. I had 3 shots of low doses (2.5-5 units), nothing happened...no side effects and no improvement. I recently had another injection, this time 7.5 units. I had no breathing problems but had some difficulty swallowing for about 1 week. Just drinking water. It's not fun but fairly tolerable, if you work around it. I took smaller sips, tilted my head down toward my chest and used a straw, as recommended. Right now I have a whispery voice like laryngitis...strange reaction for AB. Gradually it's improving. This shot has lessened my spasms and tremor. I'll have to wait and see how it does, if I'd consider doing another injection.

There's no way to know how a Botox injection would affect you. Everyone reacts differently. I'm sure your doc would give you a low dose at first, so I doubt you'd have any problems. Consider having a unilateral (one side) injection...only 1 side will be weakened and lessen your chances of unwanted side effects. Good Luck!

Welcome to the NSDA BB. You will find much help and support here.

I've been battling (*good word*) severe AD/SD for 13 years so I know what you mean. It's important to note the differences between AB and AD though, not only in the different laryngeal muscles the two versions affect, but also in the treatment of both versions.

AB version of SD causes the PCA muscles (the laryngeal muscles nearest the airway) to spasm in the opening process, thus AB spasms are "airy" and on consanants, while phonating. AD causes a different set of muscles to spasm closed, thus the breaks are straining/strangling and "ugly-sounding" (often sounding like "crying")and on vowels. Two different sents of laryngeal muscles in operation which highly affect our ability to vocalize.

One of the differences between AB and AD actually concerns treatment. Speech therapy can often be helpful for AB cases, since it can train you to modulate your air and breathing, with the affected muscles being near the airway and spasming on "open." Speech therapy is not very applicable or helpful to AD cases, due to the different muscles which spasm.

I don't want to over-simplify this, because many fellow patients have a combination of AB and AD spasms, and those combinations can be very complex. If you do have AB-version, speech therapy (with a very experienced speech pathologist) can help alot.

Yes, Dr. Robert Bastian (of Loyola University in Chicago) would be an excellent physician to see, as you mentioned, especially since you are so close. He is a very caring physician. I've talked to him at four SD symposiums and he is a fine advocate for SD patients, with a special skill and experience in dealing with AB cases.

Best wishes,

First I'm going to comment about a couple of things in Lynne's post and then I'll give my "advice" for your post! (And BTW, I have AB SD also, although it may be slightly mixed AB/AD.)

Okay, Lynne - I'm sorry to have to contradict you but since you know me, I'll bet you wouldn't expect anything different from me :-) and also you are always so nice about edits to your posts.

I'm not sure what you mean about the AB muscles (the posterior cricoarytenoid or "PCA" muscles) being "closer to the airway" than the AD muscles. I do not believe that this is correct (okay, I'll say it - I know this is not correct.) And even if it were, I'm afraid that it would not impact the ability of speech therapy to train the voice; there is no relationship between the closeness of a muscle to the airway and the ease of speech therapy.

Which brings me to the second point that I'm curious about: where did you hear that speech therapy is more beneficial for AB patients than AD patients? I believe that therapy can help both cases by teaching coping techniques, and adjusting to Botox - obviously different techniques for AB or AD for both circumstances. But modulating breathing to produce a good voice is going to be as difficult for an AB patient as an AD patient, as far as I can see. I've checked through my notes from the last 3 symposiums and I don't see any reference to this - actually the speech pathologists at the symposiums were more likely to have information and experience about AD therapy. I think you need to check your sources on that bit of info.

BTW, the PCA muscles are closer to the esophagus, which is why ABers may have more difficulty with swallowing after an injection (especially if the doc got the needle a little too far!)

Okay, Mary! When I was first diagnosed with AB SD, I felt I had a mild case and that if I just learned some voice coping skills I could learn to deal with it. However, by the time I finally jumped through all the HMO hoops to see a speech therapist, my case had turned from mild into moderate to severe. When the effort to speak (not just the "bad voice") became the issue I finally decided to try Botox. (I've posted my experiences with my first shots, etc. so if you do a search on my name you can read about that, if you want.) Anyway, what was such a delight about the Botox when it kicked in was the elimination of effortful speech. What a difference! I didn't realize the amount of effort it was taking until I didn't have that effort any longer. Although I still struggle with my symptoms (I answer the phone "good morning" or "good evening" since "Hello" will never work! etc etc) I do not feel nearly as handicapped as before.

Regarding the trouble breathing and swallowing. Unless you are a paid athlete :-) I don't think you need be concerned about this. As fancynancy mentions, these symptoms aren't fun, but you can work around them. The swallowing may just make you eat and drink slower, and the breathing can effect your level of exertion. But both symptoms, if you even get them, should subside and you are just left with a good voice for a while.

Actually, the temporary difficulty breathing on moderate exertion is a sign for me that the Botox shot hit the mark. I got a shot last Thursday, and Sunday I said to my husband, "I can't breathe! Isn't that terrific!?"

Hope this information is helpful. Feel free to email me if you have any questions.