For spasmodic dysphonia

By Connie M. Pike, MA, CCC-SLP

When I embarked on my career as a speech-language pathologist in the early 1980s, I never imagined my life as it is today. Over the years I worked with clients of all ages, from neonates to the elderly, and in a variety of settings, including hospitals, rehabilitation centers, nursing homes and private practice. I had found my calling in life.

I received so much joy watching my clients succeed in their goals. I was impressed by the bravery and effort I observed in my patients with stroke, head injury, autism, apraxia and severe language impairments—all fighting for improved communication and quality of life week after week.

I never imagined I would one day experience a similar fate, one that would challenge my ability to work hard and be brave in order to regain my ability to communicate.

My personal saga began in April of 2004, when a severe throat infection and laryngitis failed to resolve, leading to a diagnosis of spasmodic dysphonia (SD), a disorder that applies to a family of strained voices produced by spasms of the vocal folds arising from different causes.

Treating the symptoms of SD with injections of botulinum toxin-A (Botox), introduced by Andrew Blitzer, MD, in 1984, has become the gold standard. While dramatic in some patients, the results are highly variable, always temporary, and require indefinite follow-up injections at four- to six-month intervals.

"It appears that best results occur in patients who underwent intensive voice therapy before injection," stated Joseph Stemple, PhD, who advocated that patients be informed that Botox "does not cure the disorder nor does it guarantee a good phonatory voice. Also, the period of relatively normal and symptom-free voice may be short, and full symptoms may quickly and suddenly recur after the injection."¹

I was formally diagnosed with SD three months after the onset of symptoms. As is the current popular model, the diagnosing therapist informed me that therapy was unlikely to help much, at best masking my symptoms only slightly. I was referred to a physician at a Botox clinic. When I questioned whether my diagnosis might be psychogenic or muscular tension, I was assured by a team of 12 professionals that I appeared to have neurogenic SD that would probably get worse.

The year following that diagnosis profoundly changed my life. It was a time of confusion and uncertainty, especially in the early months of searching for the channel for my breathing and voice and the right way to practice; but the reward did come. In time, I recovered my voice using a holistic approach that included sensorimotor retraining of voice and breathing patterns, stress and muscular tension reduction, psychotherapy, lifestyle changes, auditory and visual feedback, singing exercises, and hours of practice. The time from diagnosis to resolution was approximately six to eight months.

After recovering my voice, I wrote a book about my experience. However, it was not enough just to tell my story because I knew that overcoming SD was not something a layperson could be expected to accomplish with self-help measures alone.

I proposed a model of rehabilitation as I had experienced it and offered an intensive voice rehabilitation clinic as an experimental treatment model. The initial clinic, which had five participants, was a wonderful success. Significant gains were achieved over a four-day period, and all five reported improved voice production.

A clinic can set into motion a specific program to improve voice production through compensatory strategies, minimizing symptoms and home follow-up.

I hope the new generation of speech-language pathologists will reject the notion that we have nothing to benefit those with SD. We must experiment and take risks in order to further our mission of providing appropriate and quality therapy.

Voice rehabilitation is a viable means of treating this disorder. With proper techniques and dedication to the process, it has the potential for more predictability and permanence than our current model.

References

1. Stemple, J. (2000). Voice Therapy: Clinical Studies. Clifton Park, NY: Delmar Learning.

Connie Pike is the owner of Free to Speak Voice and Speech Therapy in Tampa, FL. She can be contacted at (813) 984-0191, by e-mail at cpike200@tampabay.rr.com, or online: www.freetospeakvoicetherapy.com.