Background on My Spasmodic Dysphonia

I first started having symptoms of adductor spasmodic dysphonia (AD-SD) in 1990 or 1991.  I was eventually diagnosed in early 1994 in New York City by Dr. Mitchell Brin, one of the pioneers of botox treatment for SD who later became Allergan's Chief Scientific Officer for Botox.  I had one Botox shot then and expected to lose my voice for a few days, then have a good voice for about 4-6 months, then repeat the process.  Instead, I wound up with nothing more than a whisper for about 2 months.  Finally my voice came back and it was good and strong, pretty much perfect.  As the months ticked by, I figured my voice would deteriorate and I would need another shot.

That didn't really happen.  For the first year, maybe even several years after that one shot, my voice was very good.  I'd have some occasional spasms, but they were minor, more of a nuisance than a real detriment.  I also figured out a few techniques that were helpful in avoiding the spasms, the most helpful being to speak at a higher pitch.  At times I convinced myself that maybe I never really had SD to begin with.

Eventually, however, the spasms started to become worse and harder to control, even with my compensatory techniques, so I sought a solution.  I tried a variety of things: voice therapy, traditional Chinese medicine, thyroid supplements -- none of it helped in the least.  The only reliable trick that did work was alcohol.  After a few drinks, the spasms would disappear.  The problem with this approach of course was that being drunk all the time is not much of a solution.  And I would always pay by having worse voice spasms the next day.

In September 2011, I was re-diagnosed in New York City by two different SD experts -- Dr. Chandra Ivey of New York Presbyterian and Dr. Michael Pittman of the New York Eye and Ear Infirmary.  Dr. Ivey described my SD as mild, and Dr. Pittman described it as moderate.  Indeed, the severity of my SD did vary.  Sometimes I could more or less hide it, but other times I couldn't.

By then, since I was living in Shanghai (I'm from New York and was there on a visit), Botox wasn't a good option because it's simply not available in China.  I was also hesitant to try Botox again given my initial experience in 1994, and in any case did not favor a temporary solution.

It was around this time that I learned of Dr. Gerald Berke and his team at UCLA, and the SLAD/R procedure.  Here's an introductory video on Dr. Berke and his team and the SLAD/R (aka "DE RE") procedure:



After I read extensively on Dr. Berke's procedure, and spoke or emailed with at least a dozen patients, I decided that this was the procedure for me.  The rest of my experience is detailed in my blog.

13 comments:

  1. Hi Eric- I am so excited to see your blog appearing when I googled "SLAD/R surgery" this evening! first, let me congratulate you on your success in conquering your SD; second let me congratulate you on your generositynin sharing your experience

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  2. I just finished reading the 25th Anniversary edition of the NSDA newsletter, "Our Voice" and was both gratified and distressed by it. gratified that Dr. berke has been elected head of the scientific advisory board and distressed that the symposium summary discussind SLAD/R surgery

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  3. Sorry- on an ipad here and not able to edit well- anyway, the gist of my communication to you is that I am also a "satisfied customer" of surgical treatment for S D- mine, however, was in 1984 (!) by Dr. Herbert Dedo, in San Francisco. That's right, I'm 30 years post op this summer. Not sure how different Dedo's procedure was from Berke's- my recovery was more or less immediate; otherwise mine is a similar story. I had SD from the age of 19; diagnosed 6 years later, surgery 12 years later. I would like to see more research funding go to the surgical treatment, and more people freed from Botox roller coaster . With Berke on the scientific advisory board this may be happening, but I think we have a role to play in helping it along. Would you like to help get the word out futpether?

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  4. Contact me at marybrady@earthlink.net. i have specific ideas on how to approach htis through NSDA. Your blog needs a wider audience!

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  5. Hey Eric- reviewing my comments, I could label my SD experience "12 Years a Slave...to SD". I half suspect that an economic analysis of the expenditures on Botox might be all we would need to make Dr. Berke the Bill Gates of

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  6. Hi Mary - Thanks for all your comments. I'll get in touch by email. Best, Erik

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  7. Thanks for sharing your views. Great blog here.. It’s hard to find quality writing like yours these days. I really appreciate people like you. I would like to thank for the efforts you have put in writing this blog. Visit led surgical light

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    1. @Anonymous - I was really happy to read your comment, until I realized, "Hey, you're just selling surgical lights, and doubtful you even read my blog." What a world we live in!

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  8. I know the last comment was 3 years ago and you might not respond, but my interest is peeked with this surgical procedure. I have been dealing with SD for 6 years and I spent most of that time thinking it was stress related. After a job change to one that is less stressful I realized this was something more. I visited a couple of ENTs and they diagnosed me with SD. That was about a month ago, and today I learned about this surgery. I was told by the ENTs there was no cure! Well, before I get my hopes up too much I would like to understand the costs of this procedure. Would you be able to share from your experience a ball park figure? And whether insurance covered part of it or not?

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    1. For more current information, try Facebook closed group "Slad-r folk". There is also another type of surgical approach being utilized in Japan. For more information on that, see www.hiroshiba.com/en. Also, dysphonia.org.

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  10. Thank-you so much for your blog, I have found it very helpful with your detailed information. I am interested but terrified of the idea of having surgery. I have been doing Botox for too long and want a more permanent option.

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  11. See Facebook closed group "Slad-r folk" for more contacts and information. Also, dysphonia.org

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