Welcome to the NSDA bulletin board. Glad you found this forum.

Many can relate to your post (alot of folks are off the BB on vacation this week though, I think?). You've brought up pertinent issues. Docs who don't understand or are unskilled, etc.

You seem to already know, if you have SD, that you need to see an expert. Experts tend to be in the big hospitals, as opposed to a generic ENT. I went 5 years without a diagnosis (seeing ENT's and SLP's) and finally dx'd myself, many years ago, just by reading books in several libraries, prior to the Internet.

As with you, I faced the "challenge" of the *rarity* of SD. After researching for many years and getting nowhere with *specialists*, even with a severe/classic case, I finally figured out what I had and got the nerve (though I couldn't be understood on the phone) to call my SLP and tell her that I thought I had Spasmodic Dysphonia. I actually called her twice and she told me the same thing both times. This was in 1994. Both times she blew me off and said I was wrong.

I said to her..."I think I have something called Spasmodic Dysphonia." And, she said to me, "NO...there is NO WAY you could possibly have Spasmodic Dysphonia. Some kind of dysphonia, yes...but NOT Spasmodic Dysphonia." I believe she was also dealing with the concept that Spasmodic Dysphonia was *SO RARE* that she would never see a case in her lifetime.

Well...guess what! There are alot of us out there and it's not as rare as was thought in the past.

Those were her exact words. She ignored me and said I was wrong. I worked with her for a couple of years previously in speech therapy. I had all the classic symptoms (verified two years later by Dr. Herbert Dedo in San Francisco - the physician who invented the RLN surgical treatment for SD in 1975). I identified my own case and described it to her. And, my SLP still said I could NOT possibly have Spasmodic Dysphonia.

I probably need to go confront her now, and re-train her.

Bottom-line - get a new SLP. Also, if any ENT or otolaryngologist ever looks into your throat or down your nose with a flexible nose scope (laryngoscope) or a videolaryngoscope into the back of your throat and doesn't ask you to vocalize at the same time, fire them. They don't understand the science or what they are doing.

People with Spasmodic Dysphonia have completely normal-looking vocal cords. We don't have nodes, cancer or any other observable abnormality of the cords. The ONLY way any doc can diagnose Spasmodic Dysphonia (laryngeal dystonia), which is a "brain disorder" manifesting in the vocal cords, is to have you phonate and vocalize, WHILE using the equipment. It's an abnormal muscle activity in the cords (signals from the brain). Nothing wrong with the vocal cords themselves. True experts, such as Dr. Dedo, can diagnose it just by listening.

Please contact Dick Stuart at "rstuart@together.net." He's the NSDA Regional Coordinator in your area and can help you find support in your local area. Also, on the NSDA site (www.dysphonia.org), there's a doctor in Rutland who might be a contact. I'm a bit skeptical of docs who give Botox shots for everything though. As we've found over the years, vocal docs are separate from neurologists. Vocal patients need to see experienced otolarngologists - located frequently in the large medical centers, such as where NSDA symposiums take place.

You're in the East and there is an NSDA patient symposium in Washington, DC on March 8th, 2003. There will be many skilled medical professionals, speaking to patient voice issues. Also an opportunity to meet other SD'ers dealing with similar issues. Hope you can make it.

Good luck, Kristen. Write me if you need more info on the DC symposium. I've been doing patient-support for many years and this one will be the best so far. Hope people in the East don't miss it. Symposiums like this DC-one don't come along very often.

Happy 2003.

It sounds like you are in a position to travel - I'll join with Lynne in saying I hope we see you at the Washington symposium on March 8. It's a great opportunity to learn more about SD (speech pathologists for example also attend because they know the information is at the leading edge) and also to meet new friends who have SD.

Here's the link off the NSDA's website for more information:

http://www.dysphonia.org/nsda/events/event.asp?id=317

Welcome to the NSDA BB, and I'm pleased you've found us.

Good Post! Your experience with Speech therapists sounds like mine as I was also told I was crazy and wrong when I tried to explain what was happening to me. I was viewed with a scope by an ENT and he commented that it looked like a dysphonia but both he and the speech therapist that was present just kinda shrugged their shoulders as if they didn't know where to go from there. I am guessing that the knowledge of this disorder has come a long way since then(1988).

I have been referred by a member of this BB to a doctor in Philadelphia, Dr. Blumin who has treated many cases of SD and I have an appointment to see him next Tuesday. You said it was a 'no-brainer' Lynne and I was a bit skeptical but I think I'm starting to come around.

You are so right. The knowledge of our disorder has increased by leaps and bounds since 1988. Use of Botox for SD began around that time and the NSDA started up shortly thereafter also, with it becoming a professionally-managed (as opposed to a purely volunteer org working off their kitchen tables) non-profit in 1997.

Great strides have been made in the last 14 years or so. My case began in 1990. Thus, like you and many others, we sure benefit from those leaps. One of the things I've found, since beginning research on my own vocal case in 1992, is that *I think* there are more of us SD'rs out there than the docs first realized. Not as rare as previously thought (that's my theory anyway).

The Internet has provided us vocal-patients a breakthrough, in both offering information and offering mechanisms of support, such as this NSDA bulletin board. Previously, people would get SD in their middle-years (late 30's to 50's, in general ~ but not always) and then go off and hide. Thus, it's difficult for the medical professionals to learn about our disorder if we go off somewhere and keep our mouths shut, even though that's sometimes what we want to do when we get this.

Didn't mean to imply any of this is a no-brainer. Not at all. I spent years searching, as many people on this BB have. The most important thing though is to educate the doctors and vocal specialists. Spasmodic Dysphonia (*Laryngeal Dystonia*) is the most complex level of a dysphonia. But, SLP's study many dysphonias. Prior to Botox, SD was the hardest dysphonia to treat. "Dysphonia" is a generic term indicating "something wrong with vocal production." There are numerous dysphonias - including nodes, stuttering, vocal cord paralysis, etc.

I've met many doctors and Speech Language Pathologists who were trained in the *old school,* prior to the Internet and patient-activism, who never imagined that they would see a case of Spasmodic Dysphonia in their lifetime. That's what they were told in school. One of them was my college roommate and another interviewed me for a middle-management job in Corporate America two weeks after I had RLN surgery in 1996. I still had the bandages on my neck. When I explained my low volume voice, in the interview (saying I'd just had vocal surgery), she asked what for? She said she had a degree in Speech Pathology from a large California university. When I told her what I had and what type of surgery I had, she nearly passed out while interviewing me. No exaggeration. She told me that they were told at the University that Spasmodic Dysphonia (called "Spastic Dysphonia" in the early 70's, when she graduated) was so horrible and so rare that none of them would ever see a case in their professional career.

It's up to all of us to educate the public and the professionals (and, the students in universities) to pull them into the 21st century. Yeh...SD is no fun, but it's treatable and we've made great strides in the last few years.

Your referral to Dr. Blumin is a good one. Many people on this BB have been treated by him. Others of us met Dr. Blumin in Miami two months ago. His background, working with Dr. Berke at UCLA, and the studies they have done on the anatomy of the larynx, makes him an excellent partner in pursuing your own case. Coincidentally, my new otolaryngologist worked with Berke and Blumin several years ago himself.

The acronym "ENT," means *ear, nose and throat.* For us on this bulletin board, we look for experts in the "throat" category, specifically those who specialize in "VOICE." It makes a large difference, having an expert in our own disorder. The first question we should always ask of an ENT is "what's your expertise"? If it's the "ear?"...go someplace else. Second question is..."how many cases of Spasmodic Dysphonia have you treated?" My doc treated over 1,000.

BTW, we need to train the insurance companies on this also. If we have a voice problem, we need to see a voice expert and the insurance companies need to understand the difference. A generic ENT is not good enough for a patient with Spasmodic Dysphonia. We need experts.

Best of luck, Bob. Let us know how it goes. (I enjoyed your description of the "shrugged shoulders"...I can visualize it. LOL).

--Lynne (AD/SD; Northern California)

In response to Mitch.... I, too, found 2 docs in VT listed on the National web page. I personally know one of them, and his speciality was physiatry, and lately he's been in general practice. Looks like he uses Botox for everything. He's not an otolaryngologist at all... I would wonder about the other doc listed given my knowledge re Mark Bucksbaum and my ability to get a diagnosis from either one.

Since I posted my message, my SLP has made contact with one other woman in my area with SD who sees an ENT in Burlington, VT who reportedly has 13 patients that he is actively treating. I have an appointment with him on Jan. 21. Hopefully, he knows what he's doing... I do have a little hesitation about it since I had to spell spasmotic dysphonia for the secretary I made the appointment with, she had no clue what I was talking about...

And now for several others questions... What questions should I be asking this doc? What kind of exam should I expect him to do? The last ENT I went to did a videolaryngoscopy, with no vocalization or phonation, he just looked, and pronounced me with normal cords, therefore no SD.

Thanks for all your support!