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Posted by: Sonya ® 08/15/2002, 21:00:25 Author Profile Mail author |
Hello. I have just been diagnosed with ABSD. My ENT suspected that I had this after my "chronic laryngitis" didn't go away. Even after countless rounds of antibiotics, steroids, allergy meds, allergy shots, and acid reflux meds. I went to a laryngology specialist today and he confirmed the diagnosis. I'm not happy to have this condition, but I'm so relieved to finally know what's wrong with me. I was also very, very happy to find this Board. I have been feeling very alone and isolated in this condition. I have found that people do not understand and react in many different ways to my voice (or lack there of). They either make fun of me, are afraid of catching whatever is wrong with me, or they feel sorry for me. I think I have heard every joke there is to tell about my voice. I know people mean well but feeling sorry for me is almost as bad as making fun of me. Anyway, I am supposed to go to a speech therapist in three weeks to have a voice evaluation. Then the doctor suggested I go to Vanderbilt University (4 hours away) to get Botox injections. I am very nervous about the injections and still not sure I understand the condition. I know some of the basic info and have looked over some of the postings here. But when you don't know much about SD, it's hard to know what to look for. Can anyone tell me things I need to be aware of and what to look for to help me understand SD better? Thanks Sonya |
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Posted by: Kim ® 08/16/2002, 00:36:28 Author Profile Mail author |
I know Vanderbilt is very good. Botox does tend to be less effective though for ABSD from what I've heard (mostly from reading this board) though. Kim, who (on an only somewhat related note) for the first time in over a year, actually COOKED a meal for herself AND was able to eat it too (WITHOUT choking or coordination problems!) before wearing out!! (not that I expect to be able to repeat the performance any time soon, but still, every success counts!)
--modified by Kim at Fri, Aug 16, 2002, 00:37:50 |
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Posted by: Lib Haywood ® 08/16/2002, 08:02:33 Author Profile Mail author |
Sonya, welcome to the SD/BB. You will learn a lot about SD as you read questions and answers accumulated here. I understand your feelings about your voice problem. All of us who have SD have experienced these reactions. SD takes away your self esteem. You will find a lot of caring people on this BB. In 1987 when I started having my voice problem there was very little info available on SD. The only thing I knew was they do not know what causes it and there is no cure. That is probably true today but there is a lot of literature and awareness now thanks to the National Spasmodic Dysphonia Assoc. and all of the support groups around the nation. I suggest you try to find a support group in your area. I received BoTox injections at the National Institute of Health and later at Vanderbilt Medical Center. You will find a great group of doctors there who are very knowledgeable about SD. I highly recommend them. Over the years I had 34 injections of BoTox and in Jan. 2001 I had the SLAD surgery by Dr. Berke at UCLA. Dr. Mark Courey at VMC has recently performed this surgery successfully. We are all different and some things work better for one than another. I wish you the very best as you strive to find the best direction for you. Lib Haywood, Southeast Regional Coordinator, NSDA, Charlotte, NC |
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Posted by: betty ® 08/16/2002, 19:20:43 Author Profile Mail author |
Sonya, I have been a patient of Dr Mark Courey at the Vanderbilt Voice Center for 4.5 yrs, and receive Botox every 4-5 months. You will find the doctors and staff at the Center to be understanding and concerned about your well being. They will work with you and patiently answer your questions. Tn/mix/botox |
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