Posted by: Barb Oberholtzer ®
11/11/2003, 18:44:06
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I had Dr. Berke's surgery over three years ago. Yes, you will be heard but not in noisy places. I had a very strong, smooth whisper immediately and could be heard easily on the phone but needed to be in the same room with whomever I was speaking too. You won't be able to give orders to the children unless you are in the same room. It took almost six months for my voice to get stronger and it seemed to happen almost overnight and stay that way. It was a very long six months but well worth the wait. Some regained volume in three months or so. I taped my voice occasionally so I could notice the changes over the months. I am very pleased so far with my "new" voice. I wish you luck with your surgery and please keep us informed of your progress. Barb Oberholtzer, Rockville, IN
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Posted by: Jeff Brode ®
11/11/2003, 19:35:24
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Alice, I hate to be the bearer of bad news, but I once wondered the same thing myself. I find now, that after almost three and a half years since having the SLAD-R surgery (done by Berke, Blumin et al.), I still whisper. Since the day of my surgery, my vocal cords have been totally paralyzed and have since atrophied. They are gone! The total lack of voice is not even the worst of the problems! I constantly aspirate liquids. Breathing, itself, is problematic! I'll spare you the details of the consequences of a destroyed larynx. Sure, many have been helped by this surgery, but the downside has generally not been spoken of except by the few of us who have had negative (or very negative) outcomes. I hope that this makes you a little bit better informed. Unfortunately, it seems that you will not get this information from any doctor, especially those at UCLA. Best wishes,
Jeff Brode
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Posted by: JOHN S. BEEMAN ®
11/11/2003, 19:46:20
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Alice - to a large extent, you have no control over what happens or when it happens. I waited 18 months before I gave up. Frankly, it could be up to a year - assuming you recover a voice. You just have to plan for the worse case situation. btw - it is not my intention to be a "wet blanket". Just understand that there are risks involved that you may not have been warned about. Whatever you decide, I hope it works well. At the risk of being repetitious (lawyers often are), here is a prior post along the same lines:Obviously, this is an important decision for anyone. This condition, AD/SD is very debilitating. If botox therapy starts to fail, the patient has few choices. No doubt, living with SD takes it's toll. Repeated botox injections take a toll as well. And if botox ceases to provide relief, the patient is just plain afraid. I know that when I talked to Dr. Berke, the notion that he had a 95% success rate really encouraged me. Also, I asked "what's the worst thing that could happen?" and I was told that the spasms might return and, if so, I could go back to trying botox, even tho the success of botox could be "iffy" for me, long term. Well, 95% success is really good. But I made the mistake of assuming that this figure had been arrived at by careful study of each surgical effort. I'm not sure that this is a correct or true assumption. Also, in hindsight, it's clear that the 5 or 10% failure potential is bigger than you might suspect, especially if it happens to you. Anyone contemplating this operation should consider what effect the loss of their voice might have on their daily lives. Clearly this is an outcome that can happen - to both men and women
Modified by JOHN S. BEEMAN at Wed, Nov 12, 2003, 13:33:06
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Posted by: Jonna ®
11/12/2003, 12:01:54
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I want to provide a message of hope, although I realize everyone has different results. After 1 month after the SLAD surgery, my voice strength is about 80% back to normal. I eat and drink normally and have no voice spasms. Although I don't know the long term effects, I am THRILLED with the results!!!
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