Posted by: Susan L. ®
05/31/2006, 13:15:56
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welcome to the group. My words and speech started like yours, with one word, a few words, then gradually got worst. Took 3 years to get properly diagnosed. Yes, it is depressing..... we do understand that........ It does change one's life, in not wanting to talk so much any more, as people either do not understand you or do not hear you. I tried speech therapy which helped for awhile when in small groups, but didn't help when i was at work and on the phone all the time. It continued to get worse, then went back to my ent & was diagnosed w/ sd. He did botox, which helped, but i had strained my voice for so long, my false vocal cords then covered my vocal cords and strangled me. I was then given botox in the false & real vocal cord which stopped the strangulation. This was just done 3 weeks ago. But I have noticed a big difference. I do not have much volumne yet, but hope it continuew to improve. You need to try the speech therapy first, then the botox, try the different procedures to see what works best for you. Good luck. Sorry, I do not know a dr in ca. I'm from indiana
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Posted by: Mary Bifaro ®
05/31/2006, 15:02:09
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Dear Kristen,Welcome to the NSDA. I'm sorry to hear that you have an SD diagnosis. However, you will find alot of helpful people in our membership. Go to NSDA's website at www.dysphonia.org. Under healthcare referrals, you will find medical professionals who have identified themselves as treating SD. Also on our website is a section called "support". You will find contact information there for volunteer leaders who are willing to help you find the information that you are looking for. As for voice therapy, many SD patients use it initially. It helps with learning breathing techniques and the basic knowledge and understanding of the anatomy and physiology of voice production. Many SD patients use it together with Botox injections. Good luck to you, Kristen. Sincerely, Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: Narelle ®
05/31/2006, 19:54:14
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HI,I first got Adductor spasmodic dysphonia when I was 17 and was told it was a nervous problem and put on some very serious drugs for anxiety which never worked! I was like you, outgoing, talkative, captian of debating, choir leader etc etc. All I can say, now i'm 20 years older and wiser (?!), is don't let it stop you! I was (once I got a proper diagnoses) always up-front about the problem and told people straight out. I got depressed for sure, but once I accepted that this was a part of me I moved on. I tried botox and it was wonderful (until I started to develop immunity - worse luck!) One tip - when teling people what you've got don't try to say "spasmodic dysphonia" - it's a killer on the voice - too many vowels. I used "Vocal Cord problem"- much easier to say and much easier for them to understand! Sometimes I think Doctors make up these names for voice problems just so we can't say them - like saying Lisp with a Lisp = a cruel plot!! Then I had surgery after several botox tries after the birth of my daughter in 1998 - so by 2000 I was speaking rather well. Try not to think of the "outgoing, outspoken" part of your personality as being in the past - you are still there, you have a voice problem - and there are lots of options for you now as opposed to back in the "dark ages" when I first got it!! Before the surgry I had, when I used to tell people I had a vocal cord diorder, they used to laugh at me - I never stopped talking, just pushed on through. People don't notice it half as much as you do, and belive me they get used to it so quickly that they forget about it. Try saying "Yes" before you say "hello" on the phone - putting the sss sound in front of the vowel got me through many a fearful phone pick up!! Good luck and if you ever want to e-mail me feel free. You are not your vocal cords! Cheers
Narelle, Adelaide South Australia, AD/SD 20 years
Successful Thryoplasty Type II Surgery 2000.
Modified by Narelle at Wed, May 31, 2006, 19:55:45
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Posted by: Renee ®
05/31/2006, 23:02:55
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If you have adductor spasmodic dysphonia, the botox will probably be the most effective. It takes more of a skilled physician to administer botox for abductor SD. Speech therapy can, also, be effective. Several people in our speech support group use it is conjunction with botox and say that it works rather well. You need to get a speech therapist that is well-trained in SD, though. This might be a problem. If you have adductor spasmodic dysphonia probably the botox will be your best bet. Good Luck!!!Renee ADSD/ Austin, TEXAS
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Posted by: ki ®
06/01/2006, 01:23:13
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Hi Kristin!I am also fairly new and haven't posted much. However, reading posts has been very helpful and you can go back through archives and search on particular topics. I saw a speech therapist for about three months and did not have great luck. I describe the experience as somewhat like being instructed how to "push" by someone who had never been through childbirth before. I wonder if there are any Speech Therapists out there who suffer from SD??? That would be the speech therapist I'd want because they would understand what I have to go through! I am sure there are good speech therapists out there and the gal I saw probably was good too, just not for me. I had my first shot of botox March 20th. The first three weeks were not great. The "breathy stage" for me made me sound like Minnie Mouse on helium. I could barely whisper at times. I didn't have much volume for most of that three weeks. When I tried to raise my voice, it was more like Mickie going through puberty. It made my two little boys giggle. The fourth week was better and weeks 5-9 were great. While I considered never doing botox again in weeks 1 & 2, having good voice for several weeks was totally worth it. Now, my "old" voice is starting to come back here and there but I have another shot scheduled in 3 weeks. I had a bilateral injection the first time and believe I'll request a one-sider this next time so give that a try. Everyone will tell you that it's different every time and/or takes a while to find what's right for you. For me, botox has worked (once, anyway!) and going through the few weeks of "breathy" was worth the few weeks of absolute voice bliss. :) Good luck in finding what works for you! I find I use email and in-person meetings alot more than the phone now. I also throw in more humor in general conversation because I find if I am animated or laughing or just coming off a laugh my voice is better. Take care!
Kiley
ADSD Washington (state)
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Posted by: gol ®
06/01/2006, 02:14:00
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I use a lot of voice exercises and they seem to help me a bit. not a cure by any means, but helpful.The most helpful for me is to laugh a lot and my voice seems to get higher. and say uhummmm, uhummmm, and yes, yes,, sooo, to lead into other words.
Modified by Moderator-WB at Thu, Jun 01, 2006, 07:46:42
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Posted by: Barbara S. White ®
06/01/2006, 09:43:36
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Well, you have many with you. We have all struggled with this things, come for many years. I actually went undiagnoised for 30 years and just found out wht it was three yrears ago. We are all with you and welcome you to the BB. There is some good information one here from others who have had various treatments. Still so little is know aboout SD but hopefully we will catch the attention of the researchers, doctos etc soon. Three area a few that know about us but even the docots are just learning. I had botox for two years with great success and had surgery (SLAD-R) about 6 months ago. Botox worked great but it was a two hour drive each way and surgery has been a big success but surgery does not work for everyone, and even botox does't work for everyone. We are all different so its's worth it to check all options and decide what will work best for you. Let me or one of the others know if there is anthing we can do to help you, encouage you etc. It's a hard road but there are good things happening for us so keep smiling and keep asking questions. Read the posts of the BB here and see what others have done and are doing. I wish you good success in whatever you do. Be of good cheer, good things are in store. Be blessed.
Barbara / god4me@comcast.net
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Posted by: kmoore ®
06/01/2006, 19:12:08
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I know a great doctor at UCLA in California. Dr. Mark Courey was my doctor for five years when he was at UVMC in Nashville (a 7 hour drive for me from Mississippi) but he was worth it. Now he's been in LA for a little over a year. I would still go to him if I could afford a flight every 3 or 4 months! I see a doctor closer now but not as happy with him. Good Luck!Kaye
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Posted by: Bonniebelle ®
06/03/2006, 18:28:12
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I had problems saying words beginning with "h" and the word "one." Even though my voice has returned to conversation tone, there are times when I use the intercom announcing "line one," my voice shuts off the air supply before I can finish saying the word one.My ENT referred me to a speech therapist who assigned a listing of words and phrases to help me with easy onset. About 3 years after diagnosis, I was referred by my oral communicator instructor to the local vocational rehabiliation agency that helped me get equipment to amplify my voice. The impact of SD can be frustrating to one's life privately and professionally. After the initial shock of such a diagnosis, you start to get ideas on how to adjust to SD in your life. Much success to you! Bonnie Simmons
ADSD 1999
Vocal Therapy
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Posted by: Linda Cannon-Mott ®
06/04/2006, 08:19:42
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Hi Kristen,
I too am sorry that you have SD but you will find much support, encouragement & understanding here. I was 23 when I developed ADSD.I think we all go throught the stages of grief when we are diagnosed; anger, denial, etc. & finally acceptance. We have lost a part of what we used to be. I experienced the same thing you are experiencing, didn't want to leave my home or speak in front of anyone, even in a check out line at a grocery store because people stared & I was self conscious. Ahhhh then comes acceptance & you think I can still lead a very productive life & I am not defined by SD. I would recommend that you carry the tri-fold wallet cards with you. I have found that people are just as uncomfotable as we are because they don't know if they should ask us what is worng or just say nothing at all. This gives us the wonderful opportunity to raise awareness about SD. 85% of the people I speak with are so interested in hearing about SD. If I am in a room of people for the first time I reduce my anxiety by telling them up front I have a speech disability & we are all more comfortable. I have cervical dystonia also & receive Botox for it but I have never received Botox for SD nor have I tried speech therapy. Take care of the voice you do have & don't abuse it. Best of luck to you,
Linda Cannon-Mott
ADSD/1973
CD/1989
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Posted by: Lynne ®
06/04/2006, 19:04:34
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Hi Kristen,Welcome to the SD bulletin board. You will receive alot of support and information and caring here, from others who have been through it. I'm also in California (Northern version) and have had voice problems for over 50 years. First vocal tremors very young (age 6), in elementary school, and then full-blown SD 17 years ago. Couldn't say my own name. If you are in Orange County and don't want to travel far for Botox (and if your insurance works with this option), Dr. Truong in Fountain Valley does excellent Botox shots. He is a neurologist, as opposed to an otolaryngologist, but (up here in Northern California) several SD patients have traveled down South to be successfully treated by him. Dr. Berke at UCLA is obviously an expert too. Someone mentioned Mark Courey being at UCLA. Dr. Courey is actually at UCSF (a day's drive North - 400 miles) and we in Northern California really appreciate him transferring here from Vanderbilt. There are so many options now (diagnosis, research, treatment, support, etc.), which were not available to SD'ers in the past. Best wishes --- you are not alone. The most important thing is to get a very clear diagnosis, and do NOT settle for anything except the best doctor OR the best, experienced vocal therapist. Professionals who fully understand SD. Good luck. We're all on your side, and keep us posted. Lynne (AD-SD; RLN surgery; PVFM - breathing; Northern California)
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