Spasmodic Dysphonia Update
Spasmodic Dysphonia Update
August 20, 2008
Yesterday I posted on this blog a heads-up to watch ABC’s show Medical Mysteries last night, where I was one of the mysteries. My stupid piece of crap blog software decided you wouldn’t see that post even though it shows up to me as posted.
Here’s the text version of what you missed: http://abcnews.go.com/Health/MedicalMysteries/story?id=5480171&page=1
Because a number of people who saw the episode have spasmodic dysphonia and wonder what treatments I tried (all of them), here’s a breakdown of what I know:
Botox injections: They work for many people, but are unpleasant, inconvenient, and wear off after a month or three. Everyone is different, so getting the right dose in the right spot each time is a bit of an art. Botox didn’t work too well for me, and I found out later it was because my nerves are in an unusual location in my neck, so the shots probably missed on one side.
Direct Voice Rehabilitation with Dr. Cooper: I spent a week with Dr. Cooper in LA, humming and learning to speak with what is called the “mask of your face” and using the right tone, which is higher than I would normally use to speak. I spoke with several people who had complete recoveries with this method. One got results in a week. Another had to practice a few hours a day at home for a year. For some people it clearly works. When I returned home after my week, people said my voice was substantially improved. I think the experience helped a lot in teaching me how to manipulate my voice to get the best out of it although I was nowhere near cured and the benefits faded with my lack of practice.
Unfortunately, my job involves being silent for most of the day, so it was impractical to put in the sort of practice time necessary for better results. The other three people in my group with Dr. Cooper that week didn’t get much improvement the last I knew, but neither did they keep up the practice. I don’t think any two people have exactly the same condition, and everyone puts in a different level of effort, so it isn’t surprising that it works for some and not others.
Surgery: I got what is called nerve denervation/enervation surgery a month ago with Dr. Berke at UCLA. I won’t know if it worked for another 2 -3 months when the nerves have regenerated. Until then I can only whisper, but there is no discomfort. The first week or two after the surgery are highly unpleasant. But if it works, obviously it is worth it. I spoke with a number of people who had the surgery and now have normal voices on the phone. They all enthusiastically recommended the surgery. Dr. Berke pioneered the method and has refined it over the years with a few hundred patients. My odds of an improved voice are somewhere in the 85% range or better. The odds of it being worse are very small.
My philosophy is that everyone gets something. If you’re lucky, doctors will know how to fix the particular things you get. So I feel lucky. I’ll let you know how it turns out.
Ha ha! My blog software tried to eat this entry but I had cleverly saved a copy.