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| SLAD Surgery - 3 year Report |  | ||
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Posted by: JOHN S. BEEMAN ® 06/12/2003, 12:36:46 Author Profile |
June 13th is the 3 year anniversary of my SLAD surgery at UCLA. I had AD/SD for 13 years prior to undergoing the procedure at UCLA. Dr. Berke was the main surgeon, assisted by Dr. Blumin. My recovery was poor. My voice is very weak, almost inaudible. I am told that I make sound (a low growl) due to other "structures" in my neck trying to make "compensatory" speech. As a result of my condition and the poor outcome of the surgical effort, I was unable to continue my professional work and am on disability. Dr. Berke thinks he may be able to improve my voice, some. I may visit him at UCLA in September of 2003. I have seen other physicians - some with experience with this operation. The concern is that any action taken to attempt to improve my voicing abilities could impair my breathing during exercise. As it is, I wheeze loudly when playing tennis, swimming or running.
I am fortunate that I have had excellent support from my wife and family. Without that, I'm not sure I would have been able to continue. For me, my current condition is worse than SD. I am aware of others who also have had poor results - maybe 4 or 5 patients. I certainly did not contemplate this result - but I'm sure no one did, really. It has been said that the procedure as performed on me was different in some respect than those who had the operation before me. I was unaware of that when I signed on for the operation. I assumed I would have the same procedure that the woman, with whom I had spoken, had the year before mine. I have been told that it is the nature of surgeons to attempt to "tweak" their procedures in an effort to improve the recovery. Maybe that is what happened to me, but the tweaking did not work well. I'll let you know if anything happens in September. John |
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Posted by: Barbara Oberholtzer ® 06/12/2003, 19:33:13 Author Profile |
John, You do have a big decision to make about having further surgery. I can only imagine how hard the last three years have been if it is worse than the SD. As you know, my surgery went well and my voice is still holding up well. I do not take it for granted anymore as I did prior to the SD. I will always be grateful to you for all the good tips and hints you sent me prior to my surgery when you "lead the way" and made my trip much easier. I only wish you had been as fortunate as me. Take care and I wish you much success if you decide to have further surgery. Barb Oberholtzer |
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Posted by: Lylia Bennett ® 06/12/2003, 20:50:24 Author Profile |
John, I echo what Barbara posted. My surgery has been almost three years ago as well. You were an encouragement to me as I was getting ready for the surgery. I am also one of the fortunate ones who has benefitted so much because of the surgery. Wouldn't it be wonderful to know that each time someone undergoes any type of surgery, the success rate would be 100%. I am referring to my recent cataract surgery. The vision in one eye is remarkable; the other eye didn't fare as well. I know the procedure was exactly the same and performed by the same doctor. Probably our own bodies hold the answer to that question of why things happen to our bodies in certain ways. Hopefully you will be able to see Dr. Berke in September and there will be something that he can do for you. I certainly would encourage you to go out for the visit. Then, you could decide what action you might choose. My best to you. Please keep us infomed. Lylia |
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Posted by: Nancy Fidgett ® 06/13/2003, 14:55:35 Author Profile |
Hi John: My heart goes out to you and the other SD'ers whose surgery was unsuccessful. You are constantly in my thoughts and prayers. When I decided to go ahead with surgery, I was aware of the possiblity that my voice might not return. I weighed my on-going ADSD-related problems i.e., Depression; Introversion: Low Self-Esteem; Ups and Downs of Botox every few months for-the-rest-of-my-life, and my concern over the possible long-term damage of continued Botox injections; against surgery and the (10%?) risk of losing my voice. Surgery seemed to be the lesser of two evils. So far my surgery has been successful, and I am sincerely appreciative of your honest input, John; which was very helpful in my decision process. I pray that you will be guided in your search for answers, and that a solution is 'just around the corner'.
Nancy ADSD Slad-R Surgery March 3, 2003 |
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Posted by: Brenda from La ® 06/14/2003, 21:11:35 Author Profile |
Hi John,
This has nothing to do with your SD or my Blepharospasm and respiratory Dystonia...but my grandmother was a Beeman from Oklahoma, around Ardmore, Springer and Gene Autry, to be spicific. I have ancestors names going way back if this rings a bell. Just curious to see if this possibly could run in families.. Brenda |
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