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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.
 
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Nov 23, 2011
For those considering SLAD/R, I had the same operation as Scott earlier this year, and have posted my surgical diary here: http://elaurence-sladr.blogspot.com/
 
 
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Aug 8, 2010
Thank you Scott. That is wonderful to hear! :)
 
 
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Jul 28, 2010
Hello Scott.
I had SLAD surgery about 10 weeks ago. People are commenting on how much better my voice is sounding already. Doctor told me it'd take about 6 mos. to get full results, so I'm pleased with the early results.
Will you give us an update on how you're doing 2 years after your surgery.
Thanks and have a great day. :)

[Congratulations! My own voice is 100% functional now, although it can be imperfect after exercise, or if I'm tired. But the SD itself is non-existent. The current imperfections are of a different sort (sometimes a bit raspy, for example) and don't seem to impact whether another person understands me or not. -- Scott]
 
 
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Feb 14, 2009
Scott,
I'm the other guy that was on the ABC program with you back in August. I'd very much like to hear about your surgery and where you are now. The physician who has been treating me (and DianeRehm) with botox is moving to Oregon soon and I'm again reconsidering options. Would love to get brought up to date with your situation. Cheers!
-ken
 
 
Jan 3, 2009
Fantastic, dear Scott Adams.

You sounded wonderful today on Weekend America. http://weekendamerica.publicradio.org/display/web/2009/01/03/dilbert/

The surgery and PT were indeed a great success.

Maybe you can celebrate by temporarily drawing a mouth on Dilbert. An inside joke and a tiny mark of your personal triumph.

Love that you have been able to give a voice to the downtrodden techno-geek worker that my husband and I relate to, so our bookshelves, walls and emails are filled with Dilbert (books, calendars, cartoons, newsletters and blogs). It is the first thing we read in the newspaper in the morning.

Wishing you continued good health and total continued hilarity for Dilbert and the rest of the clan.
 
 
Oct 20, 2008
Hi Scott,

I agree with you that surgery is really worth it.

I too have had Adductor Spasmodic Dyaphonia for 20 years but I underwent the laser surgery in Changgung Hospital in Kaohsiung, Taiwan 8 months ago. It was a 3 hour surgery done through the mouth leaving me no wound on the neck. I was able to gain back full volume in 3 months post-op. Now there is no problem in my daily conversation. Only that there is still some tightness when I speak in public in my job, but people don't notice that or comment on it anymore. And no more trembling voice (public speaking and daily conversation). I'm so gald that I've chosen surgery.

Wish you a speedy recovery from your surgery too, and enjoy your new life SD-free!
 
 
Oct 2, 2008
Keep us posted on your progress. Lots of us out here with SD hoping for some miracles.
 
 
Sep 27, 2008
I also have spasmodic dystonia..I have recently been diagnosed with fibromyalgia ( an other unusual disorder of poor brain transmitters).. funny though, as my brain is concerned about the cronic pain in the other parts of my body, my dystonia is feeling much better.. another censory trick perhaps... I am going to have an EEG to check on my REM sleep inperfections..This aparently has much to do with the fybromyalgia condition.. and also the raised levels of substance P in our brain etc.... Is there any connection with it all I wonder..!!!!!.. Will keep you posted
 
 
Sep 2, 2008
So the theory here is:

Fossil fuel supplies will get just scarce enough

At just the right time

To drive up prices

Which will spur innovation

Which will solve the problem of global warming

Kind of a Freidmanesque take on the Gaia Hypothesis.
 
 
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Aug 21, 2008
Scott, this line caught my eye.

"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."

Have you considered using your time thinking up comics to practice speaking? Imagine if you had a Dilbert voice, a Wally voice, even an Alice voice etc. It might be that giving each character a voice to practice different types of speaking would both help your condition and stimulate the creative process once you got used to thinking of their dialog as having an actual sound.
 
 
Aug 21, 2008
Nerves are funky things. I had nerve puncture that healed up wrong 20 years ago. I had to relearn how to touch type and strengthened by biofeedback training to keep NSAIDS from destroying my stomach or my liver.

Incidently, book shelvers who bring cats with them while they work are often involved in long animated conversations with !$%*!$%* that no one else can see.
 
 
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Aug 21, 2008
Try the Alexander Technique.
 
 
Aug 20, 2008
Spasmodic Dysphonia: I also have spasmodic dyshonia it took 17 doctors and about three years of Botox before, I tried acupuncture and EEG with neuro-feedback. I can now be heard and control my spasams. I was able to do the LA marathon last year this was my first time. I also went to Dr. Berke, he dianosed me. He is a great doctor. I live in Riverside. I would love to tell you more about my treatments. I have not had Botox in over a year. I still see my neurologist at Loma Linda every three months. He said he has never seen a paitent who had improved as much. He generlly only see results with Botox or DBS. I was a the point of trying DBS, but with so much fear. Good luck and best whishes. Spasmodic Dysphonia never goes away but it can be much easier to live with. Bye for now. Carol
 
 
Aug 20, 2008
Ouch! Your blogging software is giving you Spasmodic Dysblogia.
 
 
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Aug 20, 2008
Hahahaha...for some reason the irony of being silenced online right as you were posting about dysphonia is hilarious!

...of course, this is one of those situations that would be completely awkward in a face-to-face conversation.
 
 
Aug 20, 2008
I thought: I wonder if hypnosis would work for this.
Then I thought: Hey! Scott is a big hypnosis guy!
Final thought: Have you ever had yourself hypnotized to make other social situations match the ones where you can speak? (e.g. make talking on the phone seem like an interview)
Post thought: Scott said that his suggestibility was only moderate, so maybe this isn't enough to make one social situation seem like another.
 
 
Aug 20, 2008
I enjoyed the piece last night on Medical Mysteries. Even though you sounded good on camera, the comparison of the other gentleman (who had good results with Botox) gave me a good idea of what you've been describing.

Best of luck. I'm rooting for you.
 
 
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Aug 20, 2008
You're lucky in that they know what you have and there's a name for it...and it's not terminal. Sounds like the treatments have been more experimental than 'doctors know how to fix it'.

Why not clip on an iPod and sing all day?
Assuming your office is well-insulated, of course.

Or you could become a David-Caruso-type actor, who only ever whispers anyway.
 
 
Aug 20, 2008
Since you work alone, couldn't you just talk to yourself (or the cat) all day? While your job normally involves silence, it doesn't strictly _require_ it in the same way that, say, a library book shelving job would.
 
 
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Aug 20, 2008
Hi Scott,

I tried using the RSS link and was able to see the post from yesterday, but still cannot using the regular link. I blame IE, Microsoft, and Invista, even though I do not use Invista. Sorry if I just killed a few thousand people.

I think you hid yesterday's post so most of your bloggers would not see the program and then poke fun at you today. I am sorry I missed your spot. If someone recorded your segment, post it for us.

I hope your surgery works well. I do hope to hear you deliver some type of speech in the future.

dsg

PS: Try asking your software vendor for the version of your blog software that does not s u c k.
 
 
 
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