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As regular readers of my blog already know, about three years ago, out of the blue, I got an exotic voice problem called spasmodic dysphonia. I couldn't speak above a whisper for a year. Then one day, while practicing a nursery rhyme with my stepson, my voice suddenly returned to a functional level. Unfortunately, as is typical with spasmodic dysphonia, my voice only worked well in quiet, unstressful environments, and the world is not a quiet or unstressful place. I couldn't, for example, order a pizza over the telephone and expect the person on the other end to understand me. So for most of the last few years I have been the ghost in the room, listening and smiling, silently cursing my partial existence.

This week I underwent surgery that has a high likelihood of fixing the problem. The top surgeon on the planet for this procedure, Gerald Berke, M.D., at UCLA, opened my neck and rewired the nerve connections to my vocal cords. In three or four months, when the new nerve pathways regenerate, I should be able to speak again, in weak voice at first, and improving over the year.

So I find myself delirious today, for a number of reasons. I'm exhausted, and medicated, and most of all optimistic that the ghost in the room can get one more chance among the living.

Today is a good day.
 
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Sep 18, 2008
i hiope you get better soon!
i once spent a month without talking for medical reasons and it really was quite annoying. i cannot even imagin longer periods of time...
hugs!
 
 
Jul 27, 2008
I myself have Spasmodic Dysphonia. I have what they call mixed because I have both forms. Scott we are planning another benefit for Spasmodic Dysphonia in San Diego featuring Grammy Award Winner Juice Newton. It will be hold on October 3, 2009 that is next year of course. I was hoping you could attend. My connection to Juice Newton is I am President of her fan club www.juicenewtonfanclub.com.

There are two beneficiaries of this benefit. The Dystonia Medical Research Foundation and the National Spasmodic Dysphonia Association.

Would you please come to the event and speak? Having SD myself, I know how difficult and sometimes painful it is. I cannot tell you how much I and other would apprecaite it. You may contact me through my email address of SDVOICEHELP@EARTHLINK.NET or the fan club email link.

Thank you and hope you are doing better now!

Paul
 
 
Jul 26, 2008
Wow - sounds drastic. Praying that goes well for you.
 
 
Jul 25, 2008
YOU HAD SURGERY???? You must have good insurance coverage. They have fitted me with a mouth-piece to hold my jaw forward to see if that helps me, rather than the surgery. If they had done the surgery when it was recommended, I would be well now. Instead, I struggle with slobbering in my "so called" sleep with a mouth appliance.

I am happy for you and glad you will be feeling better. Hope you can speak like an ex-Marine sharpshooter after you recover.

Bobby sends his best. BWAHAHAHAHAHAHA

Remember Who Loves You.....................it's me........................Rita Mae
 
 
Jul 25, 2008
"So for most of the last few years I have been the ghost in the room, listening and smiling, silently cursing my partial existence."

I feel your pain! I "came down" with SD when I was 13 years old (as if high school isn't akward enough as is...) It took about three years to get diagnosed, but thank heavens we at least have botox!!! I'm 24 now and still hate the ups and downs of being able to talk and be in normal (aka loud) social situations vs being too botoxy to be heard.

Please keep us updated about your progress because I would love to know how the surgery works out for you! I also want to send you a pat on the back for doing what you need to do to be happy in life (and also a hug for what you have been through will SD!) Go your vocal chords with the healing!! :)

Sincerely, Jamie
 
 
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Jul 25, 2008
I hope this works for you Scott. To me, you're like a present day Mark Twain. I never got to hear you speak, here's hoping.

-Casey Adams
 
 
Jul 25, 2008
Hi Scott,

Best wishes with recovery!

I noticed that a lot of your readers were curious to learn more about this condition, and I'm sure that you must be dealing with a lot of emotional issues related to the change in your voice. I know I've been dealing with it a lot since I got it 10 years ago.

There's a great new book available at Amazon.com about SD called "Easier Done than Said, Living with a Broken Voice". You can also get it through this link: http://www.dysphonia.org/publications/publications.asp.

I've written this book using everyday language so you don't need any medical degree to figure it out. Nor will it put you to sleep immediately! It offers an easy to understand explanation of how the voice works and what happens when you have SD. It's written for people with SD and friends/family/curious others who want to know more about the condition. In addition to talking about the medical effects, it also talks about the emotional toll and offers advice on living with SD.
 
 
Jul 24, 2008
Dear Scott, congratulations!

My wife has spasmodic dysphonia too. After a couple of years of botox shots in her larynx to gain temporary comfort she opted for this same surgery. It's been three or four years now and she's doing well and has a stable, usable voice.

I just wanted to post a success story to tell you, like I'm sure your doctors did, that it can work.

Good luck.
 
 
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Jul 24, 2008
I realy hope it works fine this time.
You should advise against expensive and unorthodox procedures sold by internet, I think you said something about some courses from some weird doctor, i won't google it, I am quite sure of my memory and no, I am not vegetarian nor i took a variety of industrial suplements just a lot of fruit, vegetables and some fish,meat and animal organs hehe.
Get well.

 
 
Jul 22, 2008
Scott,
Congratulation on successful surgery and I hope all goes exactly as you hope.

 
 
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Jul 22, 2008
Hope your feeling better soon!
I eagerly await hearing your new voice stirring up the masses!
 
 
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Jul 22, 2008
Hey Scott, I am one of your millions of ardent fans who admire your whacky intelligence; but never bothered to register until today. Today is a great day indeed and wish you all the very best in the recovery process.
- Sam
 
 
Jul 22, 2008
Hey Scott

Get well....!!
 
 
Jul 21, 2008
small comment... HUGE SUPPORT! My thoughts are with you!

Bradley
 
 
Jul 21, 2008
Scott, I empathize. ADSD struck me 10 years ago (out of the blue) and after two years of the (unsuccessful)botox roller coaster I, too, chose to roll the dice and have Dr. Berke and his partner Dr. Joel Blumin do SLAD-R on me in June 2000. That was the last day I ever had a voice. For the past 8 years and for rest of my life I will only be able to whisper. I am sure you will do well; the statistics seem to support that. I just want to let your readers know that these guys don't have a spotless track record. Best wishes to you in your recovery. I love your cartoons!

Jeff Brode (jefbrode@comcast.net)
 
 
Jul 21, 2008
Scott,
I was so happy to hear about your possible recovery. I will send out my best healing energy to you at UCLA hospital. You also have an awesome new puppy to help you recover. I would love to see a picture of your puppy, I have an Aussie.

I am grateful to you for your humor and your ideas to make the world a better place. Thanks!
Dawn
 
 
Jul 21, 2008
I'm so glad for you. You've brought a lot of light into my life, and to the lives of my friends. You deserve a speedy recovery.
 
 
Jul 21, 2008
Congratulations! I had the pleasure of hearing you speak at Motorolla outside Chicago many years ago, and it is good that others will get to hear you, too.
 
 
Jul 21, 2008
Excellent. I'm happy that you're taking all measures to make sure your life is fulfilling and happy. Best wishes on the most optimistic outcome.
 
 
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Jul 21, 2008
Best Wishes for a speedy and full recovery Scott!
 
 
 
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