Posted by: Lynne Martinez ®
04/20/2005, 13:06:14
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Hi Dave,Good question, so I'll be glad to throw in my two cents. This was my 6th SD symposium (plus I've been to several International and Regional Dystonia symposiums and worked three voice-related medical conferences) so "new things" can be few and far between; but, there were two presentations having to do with treatment and diagnosis which I and several other "symposium vets" found quite intriguing, as the information was new to us. Those two presentations are separate from Dr. Ludlow's reports on study findings at the NIH (specifically about brain mapping), which are always interesting (and illustrate why SD is so difficult to understand) but are not complete as yet. Just got back from Portland yesterday and haven't reviewed my notes or listened to my audio tapes as yet, but to the best of my memory: -- Dr. Allen Hillel and Dr. Nicole Maronian (University of Washington) presented results of their extensive studies on Fine Wire EMG, which documented small but very distinct differences in the responses of individual laryngeal muscles, which has led to much clearer diagnosis and Botox treatment in their practice. From a lay person's perspective (mine), their work effectively explained why some Botox shots are more effective than others (mostly in AD patients, where the TA muscle is injected but the activity might be in the IA muscle) and why some Botox shots are not effective at all. They presented a much more comprehensive explanation of why a shot doesn't take than "it missed the muscle." -- Dr. Marshall Smith (University of Utah) gave an extensive presentation on studies of MTD v. SD, and the treatment methodology for MTD'ers. I thought I understood the difference but his studies (and videotapes of numerous cases, before and after treatment) made it much more clear. Alot of the MTD cases actually sounded like SD to the ear, but in detailed studies (such as Dr. Smith conducted/presented) they could be identified as MTD. Also, when treated with high quality vocal therapy, they often responded quite well. The differences were as distinct as the before-and-after tapes of some Botox and surgical patients. He mentioned that MTD is much more common than SD (approximately 10% of patients in a typical voice practice might have MTD) so I took that as a sign of hope for the many patients who think they have SD, but actually have MTD. Also, the presentation made it clearer how MTD and SD could go hand-in-hand. Pictures really do help. Some of this information was so fresh (new) to those of us veteran symposium attendees in our local Northern California support groups that we will be sharing it with group members at our meeting this coming Sunday. In both cases, the presentations reinforced the concept that patients who have given up on Botox treatment might want to consult another (more-experienced) doctor. Hope this helps. It was an outstanding symposium, full of great information (and fun fellow SD'ers) so it will be interesting to see other reports on this BB within the next few days. Also, if someone has a better memory than I do on these two presentations (or has reviewed their notes), I'd like to see additional perspectives on those fine presentations. Next symposium is scheduled for Chicago in about a year, so "no time like the present" to start planning! We didn't get exact details since Jimmie Rodgers was so awesome that he went through into the "Closing Remarks" slot, but "Chicago in Spring, 2006" is probably enough for now. --Lynne (AD-SD; RLN surgery; PVFM; Northern California)
Modified by Lynne Martinez at Fri, Apr 22, 2005, 02:56:40
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Posted by: acewood ®
04/20/2005, 14:06:40
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Thanks for your reply Lynne. Did Dr. Smith say whether or not MTD can sound like AB/SD?Dave
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Posted by: Mary Bifaro ®
04/20/2005, 18:15:03
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Dear Dave,I want to echo Lynne's fine comments in response to your post. Portland was my fourth annual SD patient symposium. I have attended 3 DMRF symposiums in the past. All of them have been educational and uplifting. There is nothing like the camaraderie of being with fellow patients. In re-reading my notes taken during Dr. Smith's presentation on MTD, I see that he was referring to Adductor SD in most of his comparisons. Dr. Christy Ludlow of the NIH said that they would be doing further studies on abductor SD with MTD. You may want to contact her at NIH at: ludlowc@ninds.nih.gov. The annual SD symposium will take place in April, 2006 in Chicago. The exact date is being worked on. Sincerely,
Mary Bifaro
Abductor SD since 1987
Charlotte, NC
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Posted by: Marilee ®
04/21/2005, 18:50:27
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I , too, appreciated your reply, Lynne, as well as Mary's.
I was interested in the part about not "missing the muscle"
because that is what happened to me with my last Botox -
it's worked before (I have ad/SD) but not AT ALL this
past time, 6 wks. ago. I am very short of breath most of
the time, in addition to bad speech. Did they talk any
of the breathing problems? Thanks for sharing!!
Marilee
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Posted by: Lynne Martinez ®
04/22/2005, 01:43:47
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Hi Marilee,I understand your concern about breathing. The larynx is the most complex organ in the human body, for its size --- and its most critical function is breathing. Swallowing is second. Talking is third (even though we voice patients often think of "talking" as the most important laryngeal function). My AD-SD case was treated by surgery almost 10 years ago and left me with a paralyzed (now atrophied) left cord, with a huge glottal gap (my cords never come together, thus all functions/anatomy of the larynx are affected) and other complications. Means "breathing" is currently a much more severe issue for me than phonating. I know I'm not alone in this issue, as there are many "atypical" SD cases. There was no specific symposium presentation on the subject of "breathing" (such as there were on subjects such as history/MTD/EMG/surgery/Botox/studies, etc.) but breathing is ALWAYS discussed (especially in the panel discussions)at SD symposiums, as most patients have that issue at some time in the history of their case. Its a big concern. Most of us can go much longer without talking than without breathing. If you are short of breath most of the time, you might want to work with your doc to figure out what is going on in your larynx around your Botox cycle, since that's not the goal of Botox treatment. As we all know, some shortness of breath is expected (when the shot is kicking in) but "most of the time" is not the standard, or the object, of treatment. It was clear to me last Saturday (since I know people in this situation) that a pure case of AD-SD (with spasms exclusively in the TA muscles and directed shots into those muscles), may go through a normal breathy phase at the beginning (depending on doseage, etc.) but should usually get to the point where you are not short of breath. Can you talk to your doctor about this situation, to adjust your injection placement or doseage? Your breathing concerns are valid. Good luck. I hope some of this helps. --Lynne (AD-SD; RLN surgery; PVFM; Northern California)
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Posted by: Marilee ®
04/23/2005, 15:59:43
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Thank you so much, Lynne, for your caring reply!! Sounds as if you and others are worse than me, perhaps,
so I especially appreciate your concern!I have been to 2 neuros who acted like they never heard
of breathing problems, but I should talk more with my
ENT and see what he thinks. It just helps to know that
others have experienced it. That is what these bb's are
so good about - to reassure us we are not alone. I went back and read some of your other posts, since you
are always so knowledgeable, and see that you gave
someone else nearly the same message some time back.
It also reminded me to send in a contribution to the
NSDA. Just want to assure you your efforts are not in
vain. :) Best wishes to you! Marilee (in Indiana)
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Posted by: John S. Beeman ®
04/22/2005, 07:54:59
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I was interested if there was any discussion about how to fix those who have suffered from a failed SLAD procedure? I know some have tried the thryoplasty, but I wondered if there is anything else or what the track record has been with the thryoplasty? Was that discussed at all? John
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Posted by: Mariann in Spokane ®
04/28/2005, 12:54:17
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Hi Dave,I thought the Symposium was excellent. This is the first NSDA Symposium I've attended, tho' I've been a member for years (diagnosed in 1990 with AD SD)and have read all the materials I could get my hands on. I didn't expect to hear too much new, but the Muscle Tension Dysphonia was new to me. I liked hearing and seeing patients with the disorder before and after speech therapy. The improvement was tremendous after only 45 minutes of speech therapy. Also a first for me, was the use of so-called "voiceless" sentence to help diagnose the Muscle Tension Dysphonia as opposed to AD SD. I didn't get the whole sentence...started something like: "He saw a mystical shape........sister Kathy's house." If anyone could fill me in with the entire sentence, I would appreciate it. Those with AD SD had much less difficulty with the voiceless sentence, while those with MTD had equal difficulty with it as with other sentences. Mariann in Spokane
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Posted by: Marilyn M. ®
04/29/2005, 07:30:49
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Lynne, I have always appreciated when you share your knowledge and experience. Same to everyone else, also.I am intrigued with this voiceless sentence used to help diagnose MTD. My case was determined (by me) to be MTD, based on the fact that it responded to TMJ treatment. My symptoms were apparent AD SD. I no longer have dibilitating voice and breathing problems, although a few weeks ago I missed about a week of work because it seemed the breathing difficulties were returning. I saw my ENT who announced after looking at my vocal cords that I had reflux. I am on Prilosec twice a day now (been there, done that before) and go back to see him in a couple of weeks or so. I also saw my dentist who checked my bite splint. There were signs that I had been clenching and grinding while wearing it at night, but the splint was NOT out of alignment. The thing that seemed to help me the most with my breathing this time was breath work based on a recording by Dr. Andrew Weil. He advocates the use of Yoga style breathing exercises. Through the execises I realized how irregular and shallow my breathing probably is on a regular basis. I think this is probably due to compensation for the breathing problems I have had in the past - along with general stress and anxiety. Enough about me. I am really interested in hearing more about MTD and breathing difficulties. I will be checking the board! -Marilyn Morrison
South Texas, USA
Modified by Marilyn M. at Fri, Apr 29, 2005, 08:02:25
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Posted by: Lynne Martinez ®
04/29/2005, 18:00:50
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Hi Marilyn,Good to see you posting again. You would have really enjoyed the recent symposium in Portland. Dr. Marshall Smith's presentation was fascinating on this subject, as is becoming more evident on this thread. As you know, SD vs. MTD has been one of the issues we've discussed for many years on this BB since many people find the BB prior to being diagnosed and treated by an experienced SD physician/SLP. It's certainly not a crystal clear distinction. Still have to listen to the audio tapes of Smith. The voiceless sentence information (mentioned in his presentation, but clarified in the panel) was key. Hope that shows up in the notes of the symposium. I think I'll write to Smith for more information. When I first started going to an SLP (NOT experienced in SD) back in 1991, she had me doing those types of things (voiceless/voiced sentences and phrases) yet couldn't figure out what I had --- she said it was not SD. Four years later, Dedo (SD pioneer) said I had one of the worse AD-SD cases he'd ever seen, and his RLN surgery on me proved it was severe AD-SD. Seems we all have to live with the concept that many cases will always be confusing, even to people experienced with SD and MTD and other vocal disorders. Even to ourselves, and we live with them! As with many presentations of the nature that occur at SD/Dystonia Symposiums, it really helps to also have the powerpoint presentation to go along with an audio feed. And also (in Smith's presentation), there were multiple video tapes of patients with both SD and MTD. He asked the audience to determine which was which. What a test! Wonder if any of us got it 100% right? I didn't, and neither did anyone sitting around me. That entire presentation was comprehensive and thought-provoking! What was especially fascinating is how similar the SD-MTD cases seemed (to the ear) but how distinctive they actually were, in the effect of treatment. Also, when he said that about 10% of cases in a typical voice practice could be MTD (with SD being much more rare), it makes you wonder how many of us actually have MTD or a combination of SD and MTD (or something else that hasn't been connected to SD-MTD yet). In my opinion (if time were not an issue) this subject could have been discussed by the medical panel for a long time. There was plenty of material. I use "yoga breathing techniques" also (the ones that Weil describes plus what I've learned in doing yoga 20 years ago and also from my SLP, who specializes in voice/SD - they are all similar). It's the technique that works best for me, with my Paradoxical Vocal Fold Motion symptoms (an odd "atypical case of SD" since my RLN surgery already addressed the AD spasms but not the other neurological issues in my larynx). As you indicate, breathing problems often go hand-in-hand with voice problems (since it all exists in the same small organ - the larynx, and one can easily impact the other). You might also be interested in knowing that one of the questions addressed to the panel (which Dr. Thomas addressed to the room of attendees, by request of whoever wrote the question) is "how many of us have been diagnosed with GERD?" A large percentage raised their hand. I take Aciphex --- doesn't really matter which "pill" it is (it's the only one my insurance would approve). GERD didn't cause my SD (since SD started years ago) but a large % of the aging (over 45 or so) population has GERD so I figure it doesn't help to have that acid coming up into my sensitive laryngeal tract, which is already compromised by surgery and collapsed arytenoids. When the reflux is controlled, I sleep better and breathe better. Whatever works. Also, similar to you, I'm a life-long "grinder and clencher" and shallow breather (My dentist and chiropractor both say I tend to hold alot of stress in the head/jaw/shoulder/neck area so have to continually remind my body to do otherwise). That didn't cause my SD either but the meds (Aciphex), the breathing exercises and semi-regular neck/shoulder massage seem to help. I'll write you off the BB. I'm rambling too much here. Good to see you posting on a subject which hits close to home, with what you've endured with the TMJ treatment. Hope some of this helps others as well. Good to know we're not alone. --Lynne (AD-SD; RLN surgery; PVFM; Northern California)
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Posted by: Sherill ®
05/02/2005, 20:38:58
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I understand the recent Symposium in Portland was very successful. I am wondering if there will be any transcriptions and or video tapes available as there were in previous years. Those of us who were unable to attend are always yearning for any news that relates to our affliction. That includes new, old or otherwise. :-)
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