I had the SLAD-R surgery on June 6, 2000. It was done by Drs. Berke and Blumin at UCLA. Since that day my vocal cords have been totally paralyzed. To be sure, I no longer have SD, but I would rather have that than the total paralysis and subsequent atrophy of both of my vocal cords, which has been the outcome I have experienced. I had no idea that such an outcome was possible before the surgery. Bilateral thyroplasty has been ineffective and has only made breathing more difficult. I am learning to get by by whispering.

One of the things that bothers me the most is the reticence on the part of doctors who are aware of this possible disastrous outcome. I have seen it mentioned nowhere. Dr. Berke had little to say about it at the symposium several months back. Another noted web MD doesn't mention it at all on his website despite the fact that I have told him about my situation a couple of times in the past two years. So I guess that leaves it to me and others who have had the same outcome (yes, there are several others that I am aware of) to get the word out.

If anyone would like to speak with me on the phone to hear first hand what someone sounds like for whom the Berke surgery was a disaster, please email me at jefbrode@spinn.net. I will send you my phone number. Best wishes to everyone out there for whom Berke surgery made things worse and best wishes to everyone who is struggling with SD.

Always sorry to hear reports of surgical failures but am glad that you and John and Steve (and others?) stay with this communication forum and keep people informed. How else would people know? We patients often know more than the docs and have to do much of this research and outreach ourselves.

I admire you so much, for sticking with this forum, month-after-month, to keep future patients informed, re surgical risks, etc. Wish you would post more often.

Two thoughts:

1) I am also an SD surgical patient, as you know, and my surgery has failed. I had six functional years post-surgery though (sort of). The "six decent years" were defined as *success* by the docs, because the spasms were eliminated. During that time, I couldn't talk in the morning or over noise. Now, there is no consistency at all. Now I can't breathe hardly at all. Haven't been able to work for four years. So, what is the definition of "success" for SD surgery? Eliminating spasms? Not good enough, by my criteria! The side-effects of my surgery have caused me worse grief (though I went back to work for a short time) than the original severe AD-SD. At this point, I'd rather have it back. As an SD-advocate, I don't recommend surgery. Like your case, Jeff...you never know.

2) It's important for every SD patient to have some sort of "support-system." That could be this BB or a chat or a local group. When patients get energized, that's when we can begin to inform the docs, and be more informed ourselves. As an example, I recently found a new otolaryngologist in my hometown who has 40 SD patients and is very pleased to work with me and take in literature. etc. I dump literature about SD off at his office at least once a month and he welcomes it. It's up to us patients. Sorry to say...the ball is in our court.

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Meeting other SD'ers in person (face-on) is where it's at. Symposiums. That's where patients can make waves, meet doctors in person, keep each other informed so that folks understand the risks of treatments and the future possibilities.

I've followed your case from the beginning. Hope to meet you in person sometime. Wonderful to talk to you on the phone...but what a stress for bad-voice people! Best wishes though, in getting rid of the other thyroplasty stuff.

Sorry to hear you have had bad results. I have adductor spasmatic dysphonia and am on Botox. Have you gone to other Doctors to see if they can repair the damage?I know Dr Bastian in Maywood Illinois was able to help Cathy in Chicago after she had that original surgery done in the late 80's early 90's. The cutting of the nerve.She could only whisper when I first met her and she had a mike with her at all times. I know its not the same surgery but would be worth a try .

Sorry about the delayed response; I haven't visited the board in a few weeks. I have not had any recommendations from any docs to try to correct the failed SLAD-R surgery by doing anything further with the nerves. I don't know if anything like it has ever been tried. Did Cathy have a section of the recurrent laryngeal nerve? Best wishes to you and thanks for the information.

(to address another post by Lynne M.): It was good to talk (well, whisper anyway) to you on the phone, too! Will make an effort to visit the BB more frequently. By the way, I have sent Micki N., the webmaster of another SD discussion board, a summary of my SD and SLAD-R experiences, which she said she would post in a few days. I thought that that way the information might be available for a longer period of time than it is on this BB (I understand the need to delete old posts). The URL to her website is:



http://www.buffalo-creek-press.com

Welcome to the NSDA bulletin board and *good for you* for speaking for your wife. Many times, those of us with SD cannot speak for ourselves, thus need an advocate who can work with us long-term. In many cases, the contacts we make in this BB-forum provide that advocacy support.

I have several questions/comments for you, regarding your post:

1) You are responding to Jeff Brode. He had Selective Laryngeal Adductor Denervation surgery. He periodically posts re his own surgery, the SLAD. What you refer to is "the surgery to fix SD." There are many surgeries. Dr. Berke also does other surgeries, for different forms of SD and vocal disorders. Are we talking about the same thing?

2) It's been my understanding, based on years of personal research, that the SLAD-surgery (developed by Dr. Berke), was done originally on canines (for research, beginning in 1993) and not on human larynxes until the mid-90's and was not taught to other doctors throughout the country until quite recently. If Johns Hopkins medical specialists were doing it on a "test basis" years ago and have three years of results, I believe we are talking "apples and oranges." They are not doing the surgery that Berke developed. What is the name of what you are referring to? Do you trust that doctor you mentioned, as this information you have given doesn't fully make sense, chronology-wise.

3) It would be most helpful if you could post additional information on this bulletin board, re the exact name of the surgery you and your wife's doctor are referring to, as well as the doctors and the dates and the numbers of surgical patients you refer to in your post. When you say 1/3 and 1/3 and 1/3...how many patients are we talking about? More than three?

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You and your wife are fortunate that her Botox shots are working. As a surgical patient with extremely severe SD, I never recommend surgery but I was out of options many years ago, after years being unable to talk or work. I hope you will answer my questions, for the benefit of others on the BB, as we patients on this BB try very hard to support other patients looking for treatment options, coping mechanisms and support avenues. In that process, it's important to have accurate, non-fuzzy information on this bulletin board. We all need more than "the surgery to fix SD." There are so many.

Best of luck and please clue us in further, re specifics.

Thanks, Lynne (AD/SD; Northern California)