Where can I find a qualified SLP? I live in Nassau County on Long Island, NY. My ENT is sending me to Long Island Jewish Hospital Speech center.

Welcome to the NSDA bulletin board. You will find alot of information here, re what you deal with vocally.

You're lucky that you live where you live. Many experts there in NY, whereas there are not alot of experts in other areas.

To answer your question..."functional dysphonia" means (in medical terminology) that you have a vocal problem which is related to the way you are using your vocal mechanism. "Dysphonia" means a vocalization problem. "Functional" means that your vocal problem is due to mis-use of the laryngeal system. Such as "Muscle Tension Dysphonia."

Spasmodic Dysphonia is not purely a functional mis-use of the vocal system. It's a neurological disorder, also called "Laryngeal Dystonia" wherein the brain sends inaccurate signals to the vocal cords.

Hope you will be seeing a team of experts. Don't believe what the docs tell you until you get to a team of specialists which understands "the voice." You may have SD or maybe you don't. It's important to discover what you have, so that you can get the best treatment. I wish you luck on that.

In addition, there is a Spasmodic Dysphonia patient symposium, in Washington DC, in early March. March 8th. If you really want to find out what you have, and meet other vocal patients, that is the best place to be. You're in the East - thus fortunate to be so close to a major vocal patient conference.

Good wishes with your visits to the new doctors. Keep us posted.

--Lynne (AD/SD; No California)

"....To answer your question..."functional dysphonia" means (in medical terminology)(!) that you have a vocal problem which is related to the way you are using your vocal mechanism. "Dysphonia" means a vocalization problem. "Functional" means that your vocal problem is due to mis-use of the laryngeal system. Such as "Muscle Tension Dysphonia."...."

In a way. But "mis-use" will mean some kind of intentional action to many of the fine folks out there, who are not to blame for their own discomfort.

Richard Callen

You bring up an important subject that we all seem to face, with our medical professionals. So many of us are way ahead of the docs, so we have to educate them. And, clue them into new terminology. So many specialists seem to still use terminology that was replaced years ago.

Much of this plays out on this bulletin board. The subject you brought up (intentional abuse of the vocal system) is something most of us have heard at one time. None of this is intentional. It's just our way of being able to vocalize. Hopefully Marian will get a clearer diagnosis than "functional dysphonia."

In researching my own confusing case over the years, the implication of "doing something wrong" has surfaced periodically. Currently, my docs (who seem to be on top of things at this point) are saying that my false cords have fallen in upon my true cords, due to *compensatory mechanisms.* Probably true. I only have one vocal cord and have severe Spasmodic Dysphonia - thus, in order to talk at all, I probably put stress on various areas of my vocal system, non-intentionally, but it's what has been needed to get any sound out. Add that to age and it gets described as compensatory mechanisms.

Good subject for discussion. We vocal patients are not at fault. We're doing the best job we can to vocalize. Our laryngeal systems just failed (for functional/neurological/various/? reasons) and we need docs to work with us to figure it all out. A clear/accurate diagnosis, from an SD expert, is the best gift to all of us patients. Effective treatment helps alot too. Sure wish SD was easier to figure out.

This seems like a good place to remind you all that more and more "cases" of SD can be diagnosed and thereby helped, by contributing to the NSDA. Many people today can lead less confusing lives thanks to the NSDA and the people who founded it and helped it to grow.

Donations can be sent to the address above, or you can use a credit card online at this site. www.dysphonia.org/nsda/join

On Friday, January 11, I had my "functional" dysphonia evaluated by a CCC-SLP at LIJ Hearing and Speech Center in New Hyde Park, NY. I definitely have dysphonia, and start speech therapy next week. She wouldn't elaborate on what type of dysphonia I have-the ENT told her it was "functional" so I don't expect her to say anything different; but I did ask her to keep an open mind. Her report should be available in another week.

I am very grateful to all of you, and to NSDA, for information on Dysphonia. At least I could ask intelligent questions, and know when I didn't get the response I needed. Thank you for confirming my suspicions of the word "functional;" I've previously had the experience of medical professionals blaming me (the patient) for an illness which they were unwilling/unable to diagnose.

Many of you have written of the struggle for a proper diagnosis. So, I have an appointment on Monday, January 20, with a Neurologist who does treat SD and is listed on the NSDA Healthcare Referral Database. I hope that he will confirm or eliminate a neurological cause for my dysphonia while I work on the speech therapy.

For those of you with Asthma and Dysphonia -

I have found that inhaled and nebulized medications are very, very harmful to my voice and throat; I no longer use them on a daily basis, but take oral Theophylline and Accolate. I also wear a Polartec scarf around my nose and mouth at all times when I leave my house; it warms the air and keeps my throat and lungs from instantly reacting to most triggers. It looks weird, but at least I can temporarily survive outside my house and decrease the Asthma medications.

I also use Proventil HFA for emergencies - the generic Albuterol is much too irritating for my throat, but something in the Proventil makes it less so.

Lastly, Doctors (especially ENT, Pulmonary, and Allergy) have latched on to GERD as the primary cause of everything that they can't immediately diagnose. No doubt GERD does cause some Asthma and Dysphonia. If you do not have the symptoms of GERD, and have been examined and tested by a Gastroenterologist, DON'T ACCEPT GERD AS THE DEFINITIVE CAUSE OF YOUR DISEASE. Keep fighting for a real diagnosis or find another Doctor.

I agree that people need to fight to get correctly diagnosed. But, I would like to say that some types of GERD can be a-symptomatic, meaning, that "heartburn" isn't necessarily present.

The type of "high up" GERD I'm talking about, is LPR (Laryngeal-pharyngeal reflux), and LPR is a huge factor, in causing or worsening:

asthma

sinus problems

voice problems

vocal cord dysfunction (VCD), also known as "laryngo-spasm"

I was quite surprised to find that I had this LPR, as did my husband. Our subtle clues were occasionally having "vomit-y" burps, with no nausea. We never suspected that inhaling the corrosive fumes from this "reflux" material could burn the vocal cords!

Usally, a fiberoptic laryngoscopy done by a Voice expert (ENT/ear, nose & throat doc) &/or an experienced SLP (Speech & Language Pathologist) will show some "objective" signs of LPR, such as (at least):

redness of vocal cords &/or surrounding areas (called "erythema")

swelling of vocal cords

extra mucus, sometimes "stranding" across/between the vocal cords

There's going to be a conference given by a voice expert named Nelson Roy, PhD, this spring, in Baltimore, Maryland. Dr. Roy will include how to tell the difference between Spasmodic Dysphonia & Muscle Tension Dysphonia! He will also teach "manual laryngeal muscle tension reduction techniques", such as "circum-laryngeal" massage. These techniques are briefly described on pages 4, 5, 9 & links pages of my VCD (non-profit) website.

If anyone is interested in attending this important voice Conference, look at page 8 of my website, for a link & phone number, to get details about Dr. Roy's conference. He normally practices & teaches, in Utah.

My website is called, "Can't Breathe? Suspect Vocal Cord Dysfunction!".