Spasmodic Dysphonia: What Treatment Options Are Working?

For my last post in this series on Spasmodic Dysphonia, I will report on treatment options and currently available, controversial alternative viewpoints and will offer my further thoughts as a vocal coach:

WHAT ARE THE TREATMENTS FOR SPASMODIC DYSPHONIA?

The first thing we need to know is that medical treatments now available will only manage symptoms in true SD cases. That is the major diagnostic difference between SD and MTD (muscle tension dysphonia) disorders; MTD cases can be cured by re-training vocal habits and eliminating physical and psychological tension. Please note: MTD cases are much more common than SD.

Medical options pretty much boil down to two things: Botox and surgery.

First of all, several experimental surgical treatments involving such things as paralyzing nerves and splitting the thyroid cartilage to make more room for vocal cord stretch have been found to be ineffective. These surgeries also cannot be reversed, and are not now recommended.

One surgery reporting better success is called "selective laryngeal denervation-reinnervation"(SLAD/R), which is suggested for some with the AdSD type of Spasmodic Dysphonia. Patient response has been reported to be 85 - 90% positive, with life-long results of improved vocal function instead of eventual re-occurring symptoms, as has happened with other surgeries.

What has been reported to be more than 90% effective for SD patients is Botulinum toxin (BTX or Botox) injections, which involves injecting a very small amount of the toxin directly into the overactive vocal muscles. It weakens these muscles so that spasms are diminished and the speaking voice is improved. Patients experience best results more often having one side at a time injected instead of hitting the whole set of overactive spasming muscles.

The drawback to Botox therapy is that it is only temporarily effective, and must usually be repeated every three to six months. It is important to find a doctor who is skilled in delivering this injection because a needle must be inserted into the vocal muscle affected, frankly a tricky spot to hit. The treatment is expensive and can be painful, but is the method of choice by most SD sufferers at this point because surgery is considered a last resort.

ALTERNATIVE/SUPPORTIVE TREATMENTS

I would be remiss in my three-part series look at SD not to tell you that there are also reports of this disorder being overcome with vocal and breathing therapies and re-training. The website www.spasmodicdysphonia.us discusses these alternatives, reporting that many vocal coaches including Roger Love and Gary Catona report success treating SD patients with vocal training. Another such viewpoint comes from Connie Pike, CCC-SLP. A quote from Connie's website:

I have come to view SD as a mindbody disorder; not psychological or neurological, but both. I believe we cannot separate the mind and body functions, including the function of the brain... The track record for voice therapy is a poor one. I believe this is because speech therapists are not properly trained to administer voice rehabilitation with the intensity and the holistic nature that SD therapy requires. The emotional piece of SD is huge and there are breakdowns not just in voice production, but in breathing, voice image and more.The “feeling” of proper voice production is lost in a case of SD and must be rediscovered.

Chiropractic, Alexander Technique and Feldenkrais Method can provide symptomatic help in certain cases, and a breathing technique is discussed here.

MY THOUGHTS FOR VOCAL COACHES

The medical professionals I heard and spoke to at the Nashville symposium last week all say that much about spasmodic dysphonia remains a mystery. They wanted me to know as a vocal coach that if I run into a frustrating case I can't cure with my vocal training, I should send them to get evaluated for vocal damage or spasmodic dysphonia, which of course I have done and will continue to do. They also affirmed that patients with SD can, especially if they have mild to moderate severity of the disorder, be helped to a limited degree with vocal therapy and retraining.

However... an SD sufferer was the person who invited me to the symposium, because she had been so frustrated by seeking help from drama and vocal coaches with no positive results. She quite rightly wanted to get the word out about SD to vocal coaches so they would know to recommend medical evaluations instead of continuing ineffective training if they suspect this condition in a student.

Could alternative treatments cut out the need for Botox injections? Are the above websites just selling false hope to suffering people? I don't have the personal experience to form an opinion.

Vanderbilt Voice Clinic suggests the following website for the most accurate information on spasmodic dysphonia: www.dysphonia.org .

My course of action:

• If a student comes to me with signs of spasmodic dysphonia, I will not tell them I think they have it, because I know you can talk someone into manifesting a disorder just because they believe it.

• I will try using the training that so far has helped everyone I work with, at the first lesson. If I cannot get quick results moving in the right direction with vocal improvement, I will suggest a medical evaluation from experts in the voice such as Vanderbit Voice Center to rule out physical vocal damage or conditions such as spasmodic dysphonia which might require medical intervention.

• If spasmodic dysphonia is diagnosed, I will consult with the medical professionals concerning any vocal training that I could try which could mask or better the symptoms of the particular client.

• I will keep up on the research into spasmodic dysphonia, which I believe is vitally important for all vocal coaches everywhere.
  

May a cure be found ... and soon... for all sufferers of spasmodic dysphonia.

Spasmotic Dysphonia: Causes and Diagnosis

So how do you get spasmodic dysphonia? How is it even diagnosed? There are currently unsolved mysteries in the answers to both these questions.

WHAT CAUSES SPASMODIC DYSPHONIA?

Here's the current state of research... no one really knows for sure. Somehow improper and inappropriate signals are sent from the brain to the vocal cords that produce spasms of the muscles controlling the vocal cords. Estimates are that 5 in 100,000 people are affected, twice as many women as men. Onset it usually mid 30's to 50's, but can begin in teens.

Sometimes the onset occurs after a viral illness or psychological trauma, sometimes after some kind of physical vocal damage. Sometimes the person has been poisoned by taking a medication or being exposed to heavy metals. Sometimes there is family history of some kind of dystonia, or muscle spasm disorder. And sometimes it seems to come out of thin air, someone just wakes up one day and the voice has a strange uncontrollable sound to it. And sometimes the voice is normal!

What is known is that SD is exacerbated by stress, fatigue, pressure and tension. An SLP at the symposium explained it to me like this: the threshold for vocal dysfunction is much lower in SD patients, and the stress that can trigger a worsening of the symptoms can be mild. There is usually gradual onset, it gets worse, then levels off.

HOW IS SPASMOTIC DYSPHONIA DIAGNOSED?

Many times the voice disorder called Spasmodic Dysphonia is ignored until it interferes with a person's lifestyle or employment. Often the first help sought will be from a vocal coach. That's a huge reason for all vocal coaches to be familiar with SD.

The presenting symptoms occur with the SPEAKING VOICE! If the speaking voice is fine, spasmodic dysphonia is extremely unlikely to be a problem, in fact I would dismiss the possibility outright, and suggest re-training the singing voice which is likely to have problems with "muscle tension dysphonia" (MTD) instead. IMPORTANT: if vocal lessons and re-training does NOT result in quick progress, the presence of SD should be considered.

Symptoms run the gamut:

• You have trouble speaking, sounding chronically hoarse.
  
• You are frequently asked if something's wrong with your voice.
• Your speaking voice sounds tight, strained, strangled, breathy or whispery.
  
• Spasms in your larynx often interrupt sound, causing words and sentences to be broken up.
• But...breathing and swallowing feel normal.

Here is a video illustrating the sound of a voice plagued with variations of spasmotic dysphonia. Here are some audio file illustrations from a different source.

Getting an accurate diagnosis of SD is difficult. It can take months o r at least weeks to get a definitive diagnosis, because the symptoms of SD and MTD are very similar, and other vocal issues must be ruled out. Diagnosis IS important, however, because treatment is different and must be tailored to the disorder, or the combinations as listed in my previous post defining SD and its various types.

What to do if you suspect spasmodic dysphonia or any other voice disorder? If in doubt, get checked out- by a medical team expertly familiar with SD such as the Vanderbilt Voice Center. As vocal coaches, choir directors and drama teachers, if we suspect a physiological or neurological disorder like SD, we should always suggest a medical examination.

At your check up, you will have your vocal cords "scoped" to see if there is any physical problems that can be found in your larynx. You will be asked, probably by a speech language pathologist (SLP) in the medical team to speak certain phrases such as

• "Aaron eats apples & oranges",
  
• Help me hold this hoop, pet the pound puppy"
  
• and sustain certain vowel sounds like "ee" and "ah", among other speaking and singing tasks.

But there is no brain scan or blood test for definitively identifying this disorder. The two evidences most relied upon for diagnosis of true spasmodic dysphonia are -

1. ...the sound of the voice (vocal nuances can tell an experienced clinician with a good ear whether or not to suspect SD)
2. ...and whether or not a round of speech therapy and/or vocal training will work. The experts at the SD symposium suggest that if re-training offers limited or no success, the problem must originate in the wiring of the brain, possibly the basal ganglia, which cannot be re-trained. I will discuss this theory as well as report on alternate theories in my next post about treatment options for SD patients.
   

After various stages of testing, treatment options for spasmodic dysphonia are offered. I'll discuss these in my next post.

Spasmodic Dysphonia: What Is This Mysterious Voice Disorder

I had the pleasure of attending a conference on Spasmodic Dysphonia (known as SD) sponsored by the Vanderbilt Voice Center this week. Instead of being a dry, boring medical recitation of things I already knew, it was fun, full of kindness and caring... and truly illuminating. I'm so glad I went.

This will be the first post in a series on this disorder with information gleaned from the doctors, speech pathologists and speakers with SD at this event. These experts included Charlie Womble, NSDA Board Director, Jennifer Muckala, M.A. CCC-SLP, C. Gailyn Garrett, M.D. (Medical director at Vanderbilt Voice Center), Fenna Phibbs, M.D., Amy Zeller, Ms. CCC-SLP, Brienne Ruel, Gwen Sims-Davis, Jill Van Vliet and several NSDA support group members who have SD.

First, before you self-diagnosis and scare yourself, let me state this firmly:
In all probability- YOU DON'T HAVE THIS! But if you did... or knew someone who did... you'd want it to be properly diagnosed and be pointed towards something that could actually help instead of frustrate. So here goes my first post...

WHAT IS IT?

Spasmodic Dysphonia (SD) is a voice disorder which is part of a family of neurological disorders called dystonias. Dystonias cause muscles to contract and spasm involuntarily.

Here are five forms of SD:

• Adductor spasmodic dysphonia (AdSD), which is by far the most common, is where the adductor vocal muscles (thyroarytenoid or TA muscles) are too active and spasm frequently on voiced speech sounds like vowels in the words "eat, back, in, I, olives, nest". The voice has a strained, strangled sound.

• Abductor spasmodic dysphonia (AbSD) occurs where the adductor vocal muscles (crycothyoid or CT muscles) are too active and spasm on voiceless speech sounds like "f, K, c, t, h, th." The voice is very breathy and the person feels short of breath when they talk. It is also often accompanied by chronic constriction... grabbing and holding of the vocal folds.
  

• Mixed... where symptoms of both AdSD and AbSD are present.

• SD with tremor... where there is also a tremor in the voice. In this case, the SD problem is compounded and accompanied by a separate disorder... tremor. The voice will have a rhythmic fluctuation when sounding vowels if a tremor is present.

• And lastly... SD may be mixed with... or misdiagnosed as... muscle tension dysphonia (MTD). This sometimes happens when a person with AdSD tries to control their vocal folds, holding them too tight and causing a chronic tension to occur. MTD, unlike SD, is functionally based and can be cured by modifying behavior (vocal re-training).
  

SD is maddenly consistently inconsistent... that is, it doen't necessarily happen all the time, or happen in the same way. Sometimes you can fake it out for a while by speaking in a pitch or accent you don't normally use. One of the panel members with SD demonstrated in a hilarious Swiss accent that she could speak without spasm when she did this. A speech therapist expert in this field said that this would only be a temporary fix; if the person began speaking the new way all the time, the spasm would return.

The speakers at this conference were unanimous in saying that SD is NOT a psychological disorder, it is a neurological one. What's the difference? A psychological disorder can be treated by learning different thought patterns. A neurological one is physiological... re-training treatment is limited in effectiveness. There is something wrong in the wiring of the brain itself... which manifests in the end-organ, in this case, the larynx.

Posts to come: What Causes SD? How is SD Diagnosed? What are the treatments for SD? What can a vocal coach do to help?