Spasmodic Dysphonia Bulletin Board

just checking
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Posted by: motherof2 ®
09/06/2004, 12:18:20
These are the current problems I have: neck pain, throat pain, popping feeling in throat, feeling of muscles moving in throat, burning feeling when eating something spicy, pain while talking, more I talk the more I lose my voice and the more pain I have, the pain in my throat hurts worse the more I move my neck and if I am stressed or too hot I will lose my voice and only be able to speak about every other letter. Does any of this match someone else?



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Re: just checking
Re: just checking -- motherof2 Top of thread Archive
Posted by: sbayle ®
09/11/2004, 23:10:36
Hello-
These symptoms do not closely match classic SD symptoms. Although SD can be devilishly difficult to manage- I do not ever experience any physical pain associated with my voice disability.

Please make sure that you have this checked out by a physician. Pain is not the chief complaint from SD persons.

Sarah Bayle AB/AD SD



Modified by sbayle at Sat, Sep 11, 2004, 23:11:53

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Re: just checking (physical pain and SD)
Re: just checking -- motherof2 Top of thread Archive
Posted by: Lynne Martinez ®
09/13/2004, 16:14:24
Hello motherof2,

Haven't been on the BB for awhile, so just caught both your threads and will confirm what sbayle says.

Your symptom description doesn't match SD. Pain in various areas and various situations, popping, burning, etc. are quite different from classic SD symptoms, so I hope you will be able to find a specialist who can diagnose what you are dealing with, based on your symptoms. It's obviously something that needs attention from an expert and I hope we are helping you zero in.

Symptoms of typical SD don't include physical pain, especially the amount of physical pain you describe.

There are two main forms of SD (with variations and permutations). Both of the main forms of Spasmodic Dysphonia (ABductor and ADductor) include distinct vocal spasms, among other things, which sound different in each form. "Pain" is not a symptom of "typical Spasmodic Dysphonia."

Good luck in finding an answer to what you are dealing with, as it sounds very life-affecting, in your situation. The Internet has been so helpful for so many of us, in discovering what we have and how to deal with it.

Best wishes in your search.

--Lynne (AD-SD; Northern California)




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Re: just checking (physical pain and SD)
Re: Re: just checking (physical pain and SD) -- Lynne Martinez Top of thread Archive
Posted by: FOSTERKAPPY1 ®
09/20/2004, 00:03:19
I have ABSD and also have the popping, like muscles moving. When my voice is real tight, it pops, like I can feel the vocal cords stretching and popping. I asked the doctors about thi and they really didn't have much to say about it or if it was a usual symptom. The neck pain I have radiates up the back of my neck and into the back of head. Botox treatment bi-lateral has eliminated these symptoms, finally some relief... Hope you get better and get answers for your problem.



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Re: just checking (physical pain and SD)
Re: Re: just checking (physical pain and SD) -- FOSTERKAPPY1 Top of thread Archive
Posted by: Lynne Martinez ®
09/20/2004, 09:52:40
There is such a thing as "Typical SD" (AB or AD) - symptoms described in the research over the past decades - and "Atypical SD." Most SD'ers have a "Typical" case but many SD'ers often manifest an "Atypical" set of symptoms.

As an example, back before I had neurological vocal surgery for AD, I had what was termed "Extremely Severe Typical/Classic AD-SD." The diagnostician was a 30-year expert, in dealing with SD'ers. We discuss Dr. Herbert Dedo's research/findings at every SD symposium.

Currently, due to having an atrophied cord (surgically impacted), and other severe symptoms (collapsed arytenoids and false cords compromising my larynx, due to over-compensation in trying to communicate, with an atrophied cord and huge glottal gap and no volume), several other world-class SD docs have described my case as "Severe Atypical AD-SD, with PVFM."

As you, I experience severe physical pain (headaches, dizzy spells and severe sore throats/painful throat lumps - coudl be called "popping," etc.) in trying to talk, breathe and swallow.

For "Typical SD," (both AB and AD, without anything else going on) physical pain is not a symptom. However, there are many cases of SD on this BB and elsewhere, which are clearly "Atypical." As we all discuss our symptoms on this forum, it's good to remember how different some of our symptoms are, and how our larynxes behave differently.

Frankly, it's been my experience that "atypical" symptoms are more readily written off by SLP's and otos, because the symptoms are more difficult to diagnose and deal with. "Atypical" cases of SD are extremely confusing for the professionals - not to mention the patients who are trying to figure out how to describe them.

IN such cases, there is often something else, other than pure SD, going on. The more things going on, the more it becomes confusing to a specialist. Patients in an HMO are even more readily written off. HMO's tend to deal with the simplistic. They don't deal with complexity, especially with a severe or atypical case when it's up to the patient to ask for a certain level of attention (testing, etc).

Good luck,

--Lynne (AD-SD; Northern California)




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