Posted by: ida ®
01/08/2004, 08:02:58
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Silvia
I sent you an e-mail.
Ida
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Posted by: Lib Haywood ®
01/08/2004, 09:16:43
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Sylvia, I am so sorry that you have had to cope with SD for such a long period of time, not knowing what was wrong with you. I know how frustrated you must feel. It is wonderful that you now have a name for the problem and can now look for help.
You did not say where you live but your description of the Univ. you intend to visit sounds like Vanderbilt Univ. in Nashville. I drove eight hours there and eight hours back for over ten years. I assume you have not tried BoTox but are considering it. I had 34 injections over a ten year period. My injections were not painful nor did I have any pain afterwards. I am sure this is not true of all people because we are all different. My doctor injected something in the front of my throat to deaden the outside and then injected through the outside of my throat into each cord. Sometimes I would have a tickling sensation in my throat as he injected. I was injected about every four months, most of the time the injection was 2.5 units in each cord. Sometimes it takes a few injections to arrive at an amount that works best for you. BoTox is not a cure but I think you will find it is a great relief after having the spasms over a long period of time. As the BoTox wore off, my voice was never as bad as it was before I received my first injection. I hope that now you have been diagnosed you will find the best way to give you a better voice.Lib Haywood, Charlotte, NC AD/SD 1987 SlAD Surgery 2001
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Posted by: Richard ®
01/08/2004, 11:04:09
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Dear Sylvia,Go to see a good specialist. Some programs pay for trips like these. I think botulinum toxin injections will help you to speak more fluently. By the way, you cannot lose your voice from SD. Best wishes,
Richard Callen
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Posted by: fancynancy ®
01/08/2004, 13:49:34
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Sylvia, it's great that you came here to the SD BB and explained your story. You couldn't have picked a better forum. Just about everyone here has at one time or other felt the same way you have.Botox is definitely worth pursuing. Find a knowledgeable physician. The trouble with SD is that it's relatively rare...not many people have heard of it. That's why most of us started out with diagnoses like "it's all in your head", or "it's just laryngitis". And try not to feel like SD will keep you from your goals. You'd be surprised what all people do for a living here. Sure, it's a big pain in the A** (and throat, literally), and sometimes can be very frustrating. But hang in there! Find a good physician and pursue further treatments. By the way, I've tried acupuncture and chiropractic...my voice improved, then got worse! I've quit doing them and now my voice is somewhat better. So you may want to look at some things you've been doing while your voice got worse. It could be something as simple as diet (acid reflux is a culprit)...at least it's worth looking at. Keep us posted on how things are going, okay? --fancynancy--
AB/mix SD with tremor, central CA
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Posted by: David Barton ®
01/08/2004, 14:29:40
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Hello SylviaWelcome to the NSDA bulletin board. NSDA stands for "National Spasmodic Dysphonia Association" and the NSDA is the organization that hosts this bulletin board. I would echo what others have said - that it is possible to lead a productive and satisfying life even though you have spasmodic dysphonia. Some treatment options make a big difference. You asked about Botox injections - I have had these for my AD/SD for about 13 years on over 40 occasions and they do make a significant difference to the SD voice. In my opinion getting the Botox shots is no bigger deal than going to the dentist. The actual procedure is very brief, and you can leave the clinic almost immediately, but there is a period of several weeks in many cases before the voice volume recovers - many SD patients refer to this stage as 'breathiness'. The Botox injections are NOT a cure as you point out, but they are a helpful way to MANAGE a case of SD. You do NOT lose your voice from AD/SD, or prolonged Botox treatment. A few patients have virtually completely lost their voices after surgery for AD/SD. I've included a link to an informative website that explains the Botox procedure better than I can. Best wishes, and I'm pleased you've found us. David Barton (AD/SD, Auckland, New Zealand)
Related link: University of Washington - Botox injections for SD
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Posted by: sylvia ®
01/08/2004, 14:37:15
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I want to thank all of you for your support and encouragment. My brain has been spinning since I learned of this yesterday. I am going through emotions of anger and then feeling sorry for myself and crying. I need to get myself together and figure out how I am going to get on the path to recovery and feel this is a start. Does SD worsen with age? Does anyone use the chat room or some other kind of instant messaging? I know this could be much worse but I was looking for a quick fix to some kind of nodule problem that could easily be taken care of. I guess we dont choose our illnesses. My hopes are that I can remain in school and pursue my new career. I let go of my dreams of becomming a teacher several yrs ago and I cannot let this go. I really need the support of my school instructors but feel to embarrassed to tell them. I am sure they must notice that something is wrong. I am already thinking of what types of jobs that I could do were much communication is not required. You will be seeing a lot of me at the bb because i need you all and maybe someday I can return the favor. This is like a silent illness or something. Thank you all so much and I will keep you informed. Sylvia
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Posted by: Lynne Martinez ®
01/08/2004, 16:28:25
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Hi Sylvia,As you've seen, there are alot of us out here - even though SD is a rare disorder. "Online" (the Internet, and this BB) can bring alot of people with the same rare disorder together. All of the support mechanisms (local groups, the BB, chatrooms, the symposiums) do help. Don't panic. There are loads of resources. If it helps (related to your own situation - since you are currently in school and that seems to be a large concern), the first person who noticed my SD was my last professor in my Master's Program in 1990. He noticed the vocal catches before I did. Took me out of class to discuss them. I still don't know how he picked it up before I did and five years before any doctor could diagnose me. I thought I had a good ear, but he had a better one. Once you're comfortable with the information on SD, it may affirming to talk to the people close to you ( instructors, etc.) about what you have. It's not your fault. It could happen to anyone. And, once you know what you have, it can be empowering to deal with it and be able to describe/discuss it. Also, re terminology (since you mentioned "Spastic Dysphonia"), a brief history of "terminology" related to what we now call "Spasmodic Dysphonia" (AKA "Laryngeal Dystonia") is: Prior to the 1960-70's, our vocal disorder was called "Hysterical Dysphonia." It was thought to be psychogenic (in other words, in your head - craziness - as if we patients made it up). Unfortunately some ill-educated doctors still operate with that information from years ago. In the 70's, Dr. Herbert Dedo (who is mentioned at every SD Symposium, re his research/breakthroughs) proved that SD was a "neurological" (not psychogenic) disorder affecting the vocal cords. Around that time, the term "Spastic Dysphonia" began. In the late 1980's, with advances in research and new treatments and the beginning of the NSDA (National Spasmodic Dysphonia Association), a new, more descriptive term for our symptoms was used. "Spasmodic Dysphonia." Sylvia - what about your doctor? If that term ("Spastic Dysphonia"), which is archaic and obsolete, is still being applied in 2004 in your doctor's practice? Anyone using terms which are more than 15 years old is probably not going to provide the most updated/pertinent treatment or medical support to their voice patients. I hope you are getting 21st century medical attention, rather than "old school." Advances, re SD, are being made all the time so it's good to get to the voice/neurological specialists who are keeping up. Best wishes, and stay in touch with us. --Lynne (AD-SD; Northern California)
Modified by Lynne Martinez at Thu, Jan 08, 2004, 18:11:22
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Posted by: Wilma ®
01/08/2004, 18:05:14
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Hi Sylvia,
So glad to have you here. I am one of the "more mature"
SDers here on the BB. After about five years of wondering "what's wrong with my voice" I was diagnosed about three years ago by a dr. who called it Spastic Dysphonia. And when he said "Botox" I said, "Botox" I need that for my whole body but especially my face"!!! It took me another year and I finally toke the pluge for Botox. And am I happy I did that. It is a little uncomfortable but only takes about ten minutes.
My voice was very, very soft (just above a whisper) but after about four days it got progressively better---which took a few more days. I feel lucky and so happy and grateful for my "normel" voice.
Sylvia, follow your dreams . I am 74 and have been teaching piano all through my SD voice---(I'm a late bloomer). My students all understand me. When I first sounded strange I was embarrassed and didn't say anything but then decided to be honest and that really helped. I still play, practice, learn and belong to a workshop group---wouldn't give it up SD or no SD. So Sylvia, you have come to the right place. Keep having your dreams and finding your passion it is what life is all about.
Much luck to you,
Wilma Lone Pine, CA.
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Posted by: Mary Bifaro ®
01/08/2004, 21:48:09
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Dear Sylvia,There is help and there is hope for those struggling with spasmodic dysphonia. Research, awareness raising and support is being given in large numbers to people affected by spasmodic dysphonia. There is so much work being done through our national organization, National Spasmodic Dysphonia Association, which sponsors this bulletin board. Many SD support groups exist around the world so that people won't feel helpless and alone. Botox injections are one of the treatment options available. Many physicians and universities offer treatment for SD patients. Be encouraged by the thousands of SD patients who live successful lives while coping with SD. You can do this too! Sincerely, Mary Bifaro
Charlotte, NC
Abductor SD since 1987
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Posted by: Keith ®
01/09/2004, 08:19:28
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Hi Sylvia:
When I first read your post, I knew you would get many wonderful responses that would be of help and encouragement. I don't have much to add that wasn't already mentioned, but I would still like to add my own wishes for your best luck. I was only diagnosed with AB-SD this past September and have been undergoing speech and voice therapy since that time. My therapy has helped greatly, although my ENT feels I would also benefit from botox injections, so I am in the process of scheduling my first appointment. Hopefully you are working with a good physician that will provide the best treatment for your situation. If you consider therapy, I may add that (from my experience) the skill and experience of therapists in dealing with SD varies greatly. I have been to a few that did not help much, but the people I am working with since September are excellent. Again, best of luck to you and keep in touch. Keith
Pennsylvania AB/SD
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