Anything I can do besides Botox?

I have a question that I'm sure has been asked before. Although I'm glad for the relief that Botox treatment brings, I'm getting tired of the ups and downs involved, and am wondering if there is anything else I can do for myself. I had a short bout of voice therapy when I was first diagnosed five years ago, and it didn't seem to help. But now I'm wondering if I should try that again in addition to the injections. I'm in a field where having a better voice quality would sure be helpful.

Welcome to the SD Bulletion Board. Are you ADductor or Abductor or both?

If you truly have Spasmodic Dysphonia speech therapy will not in any way cure your voice problem. It will help with breath support, and teach you proper exercises to help with the range, pitch and relaxation etc. As you've probably already read their are several forms of treatment to help your voice. Some on this board have had success with medications like neuronton and other neuro type drugs. Others have had implants (shims)better known as Thyrodplasty Surgery. I am sure I am mis-spelling these words or terms and I hope someone will jump in a set me straight. Anyway, as far as success stories, There are many, but I am certainly happy to share mine.

I suffered for 15 years before finally being diagnosed with ADductor Spasmodic Dysphonia. It was very difficult and missurable to say the least. I took Botox Type A injections for 2 years. Then after having 3 injections within a 3 month period and my voice still being in spasm, I decided I did not want to live the rest of my life having to take injections in my throat with all the symptoms and ups and downs. I am so grateful that I learned about the surgery I had called, "Selective Largyneal ADductor De-innervation/Re-innervation" pioneered by Dr. Gerald Berke in Los Angeles, CA. I learned through the internet and NSDA (National Spasmodic Dysphonia Association). I had this surgery in June of 2001 and whispered for a little more than 3 months after this surgery. On September 18, 2001, I began to get a normal voice back and have been talking great since then. As I've said in my past post, I can only hope and pray that my voice will continue to be great for the rest of my life. However, like anything else you have to take a chance or a gamble sometimes, because the long term effects of this surgery are still to the best of my knowledge UNKNOWN. I can tell you that I am very pleased with the results thus far and I feel very blessed and fortunate that the surgery did work for me. It doesn't work for everyone, but there is about a 95% success rate or at least that is what it was at the time I had my surgery. What type of treatment you choose is a very personal and important decision you must make.

You can go to the top of this board and do a search on any word or subject you would like to know more about that has been discussed on this board. For instance, type in "surgery/surgeries" and scroll down and type in about 360 days and you should be able to pull up everything that has been posted from the present back to the amount of days you put in there. Hope this helps and if I can help you further, please let me know.

God Bless!

Thanks for your reply. I'm glad to hear the surgery worked for you. I'm not sure if I'm ready to try that yet. I've been reading about Neurontin on the bulletin board & would probably be more likely to give that a try first. The other thing I'm wondering is whether anyone has had any success with muscle relaxants? I know alcohol sometimes helps, but a constant state of inebriation is impractical and unappealing! :) I read on the BB that someone (Teresa M.) was taking lorazepam along with the neurontin, but can't lorazepam be addictive?

I guess the other thing I'm wondering about voice therapy is that I think sometimes I do things to compensate for the spasms that probably cause their own problems. Has anyone else run into that?

Finally (and I can hear the collective surprise out there) I'm not sure whether I'm aB or aDductor...I think it's aB...it's the overclosing type, not the whispering type. I also have some tremors at times that make me sound like I'm nervous even when I'm not, like when I'm just talking to my toddler. I'm sure someone (everyone) will set me straight shortly on which type this is! :)

Sounds like you have AD/SD (AB/SD is the whispering type... AD/SD is where the vocal cords spasm and overclose -- a tremor can co-exist with either type).

Re: compensation... I can relate... before I had botox, that is... and when botox is wearing off. It's a semi-conscious thing but quite often counterproductive.

As you have AD/SD, you probably respond reasonably well to botox. but yes, it is a cyclic treatment with 'ups and downs.' Personally I think the relief is worth the roller-coaster effects. But it's up to you. Many have also tried neurontin and drugs like lorazepam (a.k.a Ativan) among others with or without botox with some success. Personally, I think the "systemic" effects of these drugs (specifically Ativan/lorazepam or something like Klonopin) may scare people away and/or may stop people from continuing them due to the side effects. I'd personally love to see a medication with consistent highly positive results for SD without side effects (i.e., one that specifically targets the underlying cause and nothing else) but I'll leave that up to the hard-working researchers to figure out in the future.

either way, I'd recommend trying something other than speech therapy... from personal experience, I don't think it will get you much more out of botox (and alone I feel it's barely worth the effort). Maybe you can do some trial and error periods with botox and medications (solely during the botox "wearing off" period), and/or medications alone. And give any treatment trial a fair amount of time.

certainly no great solution to SD out there which is quite unfortunate as most of us could probably benefit from a better voice (if for nothing else than to be able to function economically in a job we at least "like"!)

Although he told me I could take 1, 2 times a day...I found that I did well taking 1/2 once a day...or sometimes 1 a day.

Sometimes I only take them on the days I'm having a really hard time with my throat.

I personally find that it does help relax my throat.
This may be different in each patient's case, and your doctor would know about your individual case.

I have a friend who has a condition of ringing in the ears. (Forgot the name of the condition.) Their doctor put them on valiums, to help relax the ear canal.

From what I have read...some doctors do treat SD with relaxants. (in combination of other techniques.)
I find that, although stress may not be the cause of my SD...it does seem to get worse when I am tired, or am under stress.
It also seems that when I have to strain to talk...that alone, can make me stressed. Therefore, I guess this is why the relaxants do help me.