Posted by: Hoarse Whisperer ®
08/04/2007, 13:05:14
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I have AB/SD and I've been in speech therapy for more than 4 years. While it's not a cure, I've found that it certainly helps me make the best use of the voice that I do have.You don't say exactly what kind of SD you've been diagnosed with, but if yours "comes and goes" depending on stress, it sounds more like you may have Muscle Tension Dysphonia (MTD). If so, then it's my understanding that speech therapy is supposed to be the best treatment option. If you go to the National Spasmodic Dysphonia Association website at www.dysphonia.org and click on Healthcare Referral, you should be able to find a good speech therapist with experience treating these type of voice disorders. If you do have MTD, then you should be able to recover your voice with proper treatment as MTD is not a neurological disorder. Best of luck to you. Lori
AB/SD since 2003
Dallas, Texas
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Posted by: Laurie ®
08/04/2007, 16:26:03
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Hi, there,Welcome to the NSDA bulletin board. Sorry to hear you have SD but you've found a great source of information. Since SD has nothing to do with the way you speak, there's really no way to "unlearn" it, unfortunately. The problem is in the central motor control of your vocal folds. I worked with a well known SD speech therapist in NYC and it was nice to learn more about the condition but I can say that it did absolutely nothing whatsoever for my voice. Botox has, however, given me my normal voice back and there are so many excellent MDs in NYC. A list can be found on NSDA's website at www.dysphonia.org by clicking on healthcare referral. Some speech therapists are listed there as well. It might be nice stress relief to attend some clinic and commiserate w/ others w/ vocal difficulties but unfortunately these other folks won't be able to help the underlying SD. I know that Toastmaster's International is a good organization to enhance your public speaking abilities. Again, it'll do zilch for the SD but if you want to be comfortable speaking in public again with your SD, it's supposed to be excellent. Good luck and welcome to the BB,
Laurie
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Posted by: mariaa ®
08/04/2007, 23:06:19
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I had success years ago with speech therapy, but had to do the exercises every day no matter what or the spasms got worse. Also, I did still have spasms but could control my breathing better when I spoke and was able to sort of camoflage it. I found out that botox works well. My normal voice does come back. I sound good after the breathy period, with no spasms and no tremor. I dont understand why your voice never came back like your old voice before SD
Can you elaborate on that?
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Posted by: CarlaS ®
08/05/2007, 19:25:55
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thanks for your response. to clarify, I believe i have adductor type SD. my ENT did diagnose me with SD, i'm just not positive which kind. after listening to a recording sample of ADSD, I've come to the conclusion that that's the kind i have. and to elaborate on your comment about my old voice not coming back after the botox, i have to say that it just never felt or sounded to me like the way i used to sound. it sounded like a smoothed out, somewhat sedated version of my old voice. there's a numbness I always felt when speaking, like i was getting an audible voice out easily, but it wasn't really mine or as full as it used to be. does that make sense? of course now that i think about it more, perhaps i just got so used to my harsh sd voice that i'm not remembering clearly what my old voice felt or sounded like. i just didn't like the results of the botox enough to continue. for me, it's comparable to the kind of artificial energy you get from lots of caffiene. it's like i'm there, but not really. sure it made life easier for a couple of months, but i guess i just don't want to have to depend on any drug for the rest of my life. And that's what it felt like to me because after the botox wore off, it was back to the tremors and spasms. i know that's how it's supposed to work but i just can't accept that botox is the only hope for treating SD. plus, for me, it was so dreadful a procedure and caused me such enormous tension when I had to get the injections that i usually fainted. then there is that breathy period which for me lasted 10-14 days in which my coworkers couldn't hear me and i just felt so vulnerable without a voice that could project for 2 weeks. luckily, i don't have the worse case of SD and can still manage without the botox. but i would like to look into voice therapy and also acupuncture and herbal medicines. any experience with this? Do you still continue with the speech therapy and/or exercises and how is your voice these days?
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Posted by: izzybella ®
09/01/2007, 13:43:41
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Carla, I am in the process right now. I have been through accupuncture, voice therapy, massage, etc. I am doing better every day. If you have any specific questions, feel free to ask me. Isabella
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Posted by: ChokedUp ®
08/06/2007, 13:29:20
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Hi there. I know we can all empathize with your situation. SD is a terribly frustrating rollercoaster.Just thought I'd comment on a few things. As for voice rehab or speech therapy, I'd absolutely try it. As I am sure you know, no one has been able to definitively identify the cause of SD, so no one can conclusively say what will or will not help any one individual. In fact, you'll learn that most SD patients have different "tool boxes" of techniques and treatments that help bring their SD under control. I was determined to avoid or delay Botox for my AD/SD for years. I first treated with a speech therapist who knew little about SD, so the results were not very effective. Eventually, I treated with 2 SLPs who knew very much about SD and the techniques they taught me are invaluable (insist on a SLP who has treated AD/SD). While the techniques did not control my SD to a point that was acceptable to me, they did help. I decided to try Botox because I was desperate and nothing else was helping enough. My first attempt failed, my second one worked. I agree the procedure is not pleasant, but for me, the benefit far outweighs the cost. I am still in what I call a trial-and-error period. I am about 8 weeks post Botox and some of my symptoms are slowly creeping back. Here is the interesting part…at least to me. What I have found, that I did not expect, is that those techniques I learned in voice rehab are serving me better now than when I was Botox-free. As my symptoms come back, if I elevate my pitch slightly (a technique you’ll find is used in voice rehab for SD), I can eliminate the spasms. I guess what I am saying is try all of the “tools” that are available to you and find the best answer for you. I also do not like the idea of being Botox-dependent, but I have to live my life today and Botox has increased the quality of my life by controlling my SD. My voice isn’t perfect, but it is worlds better. My dose was only 1.5 units per side which did result in some breathiness, but it was fairly minimal from what I have read. Another thing you can do-- if you ever consider Botox again-- is work with your physician to achieve the best dose for you. People are highly variable in their responses. Lastly, there are people who have been physician-diagnosed with SD who have reported they've overcome it through voice rehab alone. Now perhaps some didn’t have SD in the first place, but their voices sure sounded like they did. Or, maybe some went into a period of remission (along my journey, my symptoms inexplicably disappeared for nearly a year). But, it is possible that some retrained their voices to the point that their SD is now undetectable. I do believe these outcomes to be rare but who are we to say what will work for any given person. You are your own best advocate and keep fighting until you find the “tools” that are right for you. Good luck.
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Posted by: bonniebelle ®
08/06/2007, 20:39:50
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In July 1999, I was diagnosed with AD/SD. After searching for treatments, medicine and surgery was not an option for me though it was available. I was not convinced to use Botox because success rates varied with each individual, and didn't want to risk being the individual with fatal results. Testimonials I read about surgery had similar reports that the voice did not improve to their satisfaction.I tried vocal therapy around the beginning of 2000. I was not consistent, in the beginning, with using the vocal therapy because the results were not appearing fast enough for me. I was impatient with the process until my voice got worse, and I called my speech pathologist who advised I should come in for an evaluation. After 2 more laryngoscopies to verify there were no growths or cancers, I got serious about getting my voice back. All the material given me on the second time around, I practiced with a conscious effort to remind myself to be patient. I didn't want to risk losing my voice due to impatience. Around April 2003 (and after much prayer), my good-voice days began to increase and remain. Today, my voice has returned, I say, at 98%. The 2% ADSD may occur on days when my body is tired. If I try speak above a conversation level, the ADSD symptoms may manifest. I notice when I say "one" at times that throat muscles still spasm. Another SDer gave me tip on how to master that. Also, in mid-sentence, my throat muscles still spasm. You should see the look on the faces of people with whom I'm speaking, I have to assure them I'm all right and it does not hurt. Vocal therapy is a tall order on patience, but anything worth having (such as one's voice return) is worth the effort. Much success to you. Bonnie "Belle" Simmons
ADSD 1999
Vocal Therapy
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Posted by: Keith ®
08/11/2007, 18:43:50
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Hi Carla:
It is my understanding that AB is more treatable with speech/voice therapy than AD. When I was diagnosed, I was literally spiraling out of control with my AB and just didn't know what to do to make things better. I was fortunate to have met 2 excellent therapists who helped me - showing me how to maximize, with various types of speech/voice exercises - some of which dealt with proper breathing techniques - the use of my voice so as to minimize the effects of the vocal spasms that were taking place. Without them, I think I would have had to change careers. If you have not tried therapy, I think it'd be worth it. Be advised, however, that there are therapists out there - just like physicians - who are not well versed in treating SD patients. It was my experience that those therapists not well trained in working with SD were of limited help. So, I would ask right up front if the SLP (speech and language pathologist) is experienced in working with SD. If he/she isn't, I'd move on to someone who is. My one therapist moved up to the Boston area. She is so excellent, and would undoubtedly be able to help you, but I would imagine this is way out of your area. The other therapist I worked with, also excellent, moved to NYC but I have not been able to contact her for some time. From your description of 'only being able to whisper' following botox, I would imagine you have AD - which is more difficult to treat with therapy, BUT is higly treatable with botox. Again, perhaps the physician you went to just didn't arrive at the right dosage and location to achieve a benefit. Have you considered going to Andrew Blitzer in NYC? He was one of the first to begin treating SD with botox and has had excellent results. My doctor is up in Rochester, and is just excellent being that he trained under Dr. Robert Bastian - who is among the best in the world for treating SD with botox. If you are interested in more info about my ENT, please let me know. I have 100% confidence that he could help you. AND....his injection method is basically painless!! I went to one ENT who was supposed to be very good with botox, in Philadelphia, and it was among the most painful ordeals I ever experienced in my life, and went on for around 45 minutes. With the doctor I go to now, he has a way of numbing the injection area from the inside and outside so you hardly feel the needle pass through at all. He places a tube through the nose (just like an The big difference, I suspect, from what you had done, is that my ENT goes right through the center of the throat....not on the side of the neck. Painless, and really quick. I go in there, and, if all goes well as it usually does, I'm done in 15 minutes. Then, I get a benefit that lasts for about 15-17 weeks, during which time I have really fine voice. As I said, I have AB, but I suspect his consistent results are also achieved with AD patients, since he treats both. Sorry to be long winded, but, as I said....there is a difference between the success that various physicians achieve. I am so happy with my doctor up in Rochester. I just cannot recommend him enough, especially if you are close by. I fly about 760 miles (total roundtrip) for my appointments, but I think it's worth it. If I can be of more assistance, just let me know, or email me off the board. I'm a public school teacher, and so constant use of my voice is critical. I was ready to give up on botox following my first few experiences, but I was so higly fortunate to have met a patient of the doctor up there in Rochester here on the board, and then I contacted him and went from there. In fact, I go up there again in 2 weeks, since it's been 15 weeks and I can feel that I need another shot. Take care and hoping to hear from you. Best,
Keith
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Posted by: Keith ®
08/11/2007, 20:14:27
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Carla:
I had a big of a typo in my message - I meant to say that he passes a tube through the nose just like is done with any endoscopy - the thin nasolaryngescope. He then uses this to view (on a monitor) where the needle is so that he can correctly place it into the muscle prior to administering the botox.
Also, I don't believe my email address will show up on my previous post - it is keisym@hasdhawks.org
Regards,
Keith
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Posted by: Hoarse Whisperer ®
08/12/2007, 22:09:28
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Hi Keith,Do you get bilateral or unilateral injections? What dose? I also have AB and have had two unilateral injections, which didn't help that much. Next month, I'm trying bilateral injections, which have been more successful for some people with AB. Thanks! Lori
AB/SD since 2003
Dallas, Texas
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Posted by: Keith ®
08/13/2007, 08:55:43
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Hi Lori,
I always get a bilateral injection - both PCA's are injected with a single needle insertion. He does one PCA muscle, backs the needle out partway, redirects the needle around to the other side, and then hits the other one. Like I said, the needle goes through right at the center - right through and into the voicebox. The exception to all this is in the event that the needle gets clogged with soft cartilege on the way through. This sometimes happens, and then he has to try another needle to finish the other side.
The dosage that seems to help me the best is 3.6 units per side. I've found the bilateral to work very well. I know that there is a potential breathing risk associated with injecting both sides of the windpipe at one sitting, and for this reason some ENT's will not even do both sides at the same appointment, but my doctor started with a very small dosage and then we titrated our way up. I would not be interested in going back to a unilateral injection, but this is something you have to discuss with your own doctor to see if you would both be comfortable with it. Please let me know how things work out for you post-injection. Feel free to email me anytime if you want to talk about this some more. Regards,
Keith
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