Overcoming a rare voice disorder

Overcoming a rare voice disorder

These days, Botox is more than a wrinkle reducer. Injections of the cosmetic botulinum toxin are also being used to treat a rare voice disorder, called spasmodic dysphonia. This condition has affected celebrities like Robert F. Kennedy, Jr. and Scott Adams, the creator of “Dilbert.”

Spasmodic dysphonia is a neurological disorder, affecting nearly 50,000 people in North America, according to the National Spasmodic Dysphonia Association (NSDA), in which the muscles of the larynx involuntarily spasm. This causes the voice to sound gravelly, crackle, sound breathy or drop out completely while speaking.

Because of its rarity, the NSDA reports that people with dysphonia are often untreated and go their whole lives with broken sentences and quizzical looks from others.

“The vocal folds are pressed together, periodically cutting off words or giving the voice a constant strained or strangled quality,” says Dr. Robert Bastian, an otolaryngologist at Advocate Good Samaritan Hospital in Downers Grove, Ill.

Fortunately, there is a treatment that reduces the spasms and helps the larynx relax, he says. While not offering a complete cure, it helps people affected by this disorder speak without fear of losing control of their voice.

The treatment, used by Dr. Bastian, is an injection of botulinum toxin into the throat. These injections work to relax the muscles of the larynx and thereby minimize the spasms and their impact on the voice. However, patients must receive injections, on average, every four months, he says.

“Spasmodic dysphonia almost always seems to adapt to permanent treatments and reassert itself,” Dr. Bastian says. “But with the Botox injections, the disorder appears to be more bewildered by the fluctuating effects, as if they present a moving target.”

Often known as the voice box, the larynx’s job is threefold: breathing, protecting the trachea by closing during swallowing and facilitating cough for lung health, and voicing. However, spasmodic dysphonia can make the larynx’s seemingly easy job of producing voice nearly impossible, he says.

Because the larynx’s tasks are done without a second thought, it is easy to take this tiny organ for granted. If you are questioning maybe your shaky voice is something more than a sore throat, Dr. Bastian recommends you speak with your physician.

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  1. I suffered from Spasmodic Dysphonia in the late 1980’s, and was treated successfully, without any drugs or surgery, by Dr. Morton Cooper. Dr. Cooper is now retired, but I believe he still offers consultations over the phone. Medical doctors err when they attribute Spasmodic Dysphonia to a neurological disorder. I am living proof that SD is nothing more than a deep-seated, destructive vocal habit that can be completely cured through a competent, consistent application of vocal rehabilitation therapy. Dr. Cooper’s website is http://www.voice-doctor.com

    • Mairead Reilly April 12, 2017 at 4:15 am · Reply

      Hi but why does the whole world not know about this method?Has he cured every patient. No such treatment in Europe.Why does the global medical world claim real Spasmodic Dysphonia is incurable? Why were doctors not trained in this method?

  2. I am so frustrated with my diagnosis & the fact that there is no cure help

  3. In reply to Mairead Reilly- Your suspicions are valid. This Morton Cooper “method” does not cure Spasmodic Dysphonia, which IS a neurological disorder. It may help those with very mild dysphonia to a point, but it can’t magically stop a neurological spasm. For most SD sufferers, this kind of “treatment” is snake oil and robs them of both hope and money.

    There’s a lot written about SD and its causes. Scientists have isolated a specific gene that plays an important role in the development of SD, and there are other physical causes to consider as well. People need to self-educate and never let anyone tell you “it’s all in your head”, or that there’s a simple cure.

    Anyone with a vocal problem should seek out an ENT, otolaryngologist, neurologist (and perhaps a speech/voice specialist too) for a proper diagnosis and realistic treatment options.

  4. Dolores Claesson September 6, 2017 at 6:24 pm · Reply

    I have seen this in many folks with lyme disease. I do not know which pathogen or pathogens are causing it. Please get a full western blot for lyme and check for co infections.

  5. When someone is cold it is not just an allergy.. Cigarettes should not be sold to minors..

  6. Maybe it wasn’t spasmonnic dysphobia you had Mr. Green. I mean, Robert Kennedy Jr. has it and if there’s a cure for it then I think someone like Robert Kennedy Jr. would get himself cured.

  7. I saw Dr Cooper in 1999. $500 consult. He wanted $12,000 for one month of vocal coaching. I was diagnosed by an ENT, by the Mayo Clinic, and Oregon Health Sciences University. They all said it was neurological. It seemed to me that stress was a trigger. I have two aunts with voice tremors. I had botox 3 times, but prayer apparently healed me in the year 2000. I speak normally and have for the last 22 years.

  8. I have had severe voice issues for approximately 35-40 years now. I was diagnosed with severe Spasmodic Dysphonia by an ENT and then an Otolaryngologist three years ago, and have been being treated with Botox injections every 10 weeks, with very limited (if any) success. I find the process very painful and traumatizing, but the specialist said that receiving the injections on a regular, 10 week basis, will lengthen the amount of time that I will still have my voice. Can anyone confirm this? I am currently 65 years old.

  9. Kim Morrow-Bell August 19, 2023 at 7:58 am · Reply

    Hello I was diagnosed with SD by Dr. Gerald Berke at UCLA in 1994 after seeing 4 other doctors/specialists. He administered the botox injections until they started having very limited success with my symptoms. He performed the surgery to correct my condition in 1999 and it has been successful. There are times that I still lose my voice. Environment smoke and stress impact the health of my voice. I still can lose my voice for several days or weeks if under an undue amount of stress but it is a rare occasion. I havent checked in a while to see if Dr. Berkeley is still practicing at UCLA Head and Neck Dept. Please seek his services if he’s still there. He was a Godsend; a true blessing. God Bless You!!

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health enews Staff
health enews Staff

health enews staff is a group of experienced writers from our Advocate Health Care and Aurora Health Care sites, which also includes freelance or intern writers.