Once the fact that I suffered from Spasmodic Dysphonia could not have been kept a secret. The minute I opened my mouth and attempted to speak, the condition announced itself.
Spasmodic Dysphonia is a rare disease that causes spasms in the vocal cords. There is definite evidence of neurological abnormality in those suffering from the disease. Stuttering and stammering both result from damage in the same part of the brain. In general, if the disorder occurs in childhood, stuttering is the result. If it occurs in adolescence, stammering results. If the disease is adult onset, it manifests as Spasmodic Dystonia and will eventually cut off speech completely.
THE ONSET
When I was thirty years old I woke up one morning and could barely speak. I wondered how I could have such terrible laryngitis without having a sore throat. My doctor could find nothing physically wrong and diagnosed the condition as stress related. She proscribed valium and within a day, I was back to normal.
Over the next two years, there were recurrences but I knew about and liked the valium solution. Valium was a legitimate muscle relaxer and easy to come by in those days. I self medicated and kept things under control until the disease started to slip past the little blue pills.
THE SEARCH FOR A DIAGNOSIS
During the next eight years I saw over a dozen different doctors including one psychiatrist, in an attempt to diagnose and get treatment for my ailment. The general consenses was that my condition was psychogenic (mental) rather than neurogenic (neurological) but there was never any effective treatment or even a definitive diagnosis.
After a particularly frustrating three month course with a delusional speech therapist who believed there was nothing he couldn’t cure, I started to withdrwal and accept the disease. I could no longer work a regular job so I turned to book scouting which I’d dabbled in since college, to earn a living. Most of my clients were booksellers who had known me before the affliction. I lived a reclusive life with a telephone left mostly off the hook.
In the days before personal computers and the internet, Spasmodic Dysphonia was a well hidden disease. It is now believed that the disease itself may not be so rare as it once appeared. Victims of this disease were certainly not vocal and they almost always receded from mainstream life. Spasmodic Dysphonia is a disease of lonliness and isolation and I learned to live with that before I even knew the name of the affliction.
THE CORRECT DIAGNOSIS & HELP
At about this time, I was waiting in line at a grocery store and reached for a supermarket tabloid to pass the time. My efforts to avoid chat with strangers in store lines often made me fan of National Enquirer. This time the tabloid’s bombshell was dropped on me.
There in black and white was the story of my disease and struggle. It was being told by a woman in California but the words could have been my own. Someone else had the same mysterious affliction and it had a name. It was called Spasmodic Dsyphonia. Even more miraculous, there was an innovative new treatment that could restore speech. According to the tabloid, only three places in the country offered the treatment. The treatment center for Spasmodic Dysphonia closest to me was the Columbia Presbyterian Medical Center in New York.
The next day I called Columbia Presbyterian Medical Center and struggled to get the words out. The woman’s voice on the other end of the line was music to my ears. She told me she knew I had Spasmodic Dysphonia. She worked a lot with people who had the disease and she could understand. I was to just take my time and answer a few questions. I burst into tears. I’d waited ten years to hear words like hers from a medical professional.
Armed with a new report from a laryngologist at a Philadelphia hospital and a phychological write up, I called back for an appointment but was told that there was now a hospital in my own community that was doing the new procedure for Spasmodic Dysphonia. I immediately made an appointment and a week after the initial consultation I had an appointment for my first treatment.
Spasmodic Dysphonia could not be cured but there was a method to restore normal speach to those who suffered from this debilitating disease. Small amounts of botulinum toxin injected into the vocal cords weaken the spasms by blocking the nerve impulse to the muscles. These were the same botox injections used by plastic surgeons to remove wrinkles. The difference was that the needle was injected through the cartlidge of the neck into the vocal chords. It was not a comfortable procedure but it only took about twenty minutes. After four or five days, the results were spectacular. In my case I regained totally normal speech and it was impossible to tell from my voice that I suffered from Spasmodic Dysphonia.
After three to four months the results gradully wore off and the injections had to be repeated. For the last ten years I’ve received about three botox treatments a year which have been covered by my medical insurance but would otherwise cost $750 per injection.. The results are usuallly excellent although there have been a few snags. Occasionally the serum is too weak and the treatment has to be repeated. Once the national supply of botox which is made in batches and stored, ran out and I had to suffer through a month of speechlessness until there was a new batch. I have also developed scar tissue on one vocal chord which makes the treatment on that side extremely uncomfortable and which may have a negative effect on the results eventually.
NEW HOPE & NO MORE SECRETS
Overall, I have been pleased with the results but the treament is not a cure and the long term effects are unknown. There have been rumblings for awhile that acupuncture was being experimented with as a treatment for Spasmodic Dysphonia and other movement disorders, but there was no conclusive evidence. My doctor discouraged considering this but I continued to search the internet from time to time.
Recently, the first scientific test using acupuncture as a treatment for Spasmodic Dysphonia was completed and the results were published along with the protocol on the internet. It is not an invasive procedure and the results are very promising. I copied the protocol and intend to make an appointment with a doctor who is an accupuncturist.
Bringing the method to the doctor might be an unorthodox way to seek treatment but conventional medicine offered me little in the way of a diagnosis or a treatment for Spasmodic Dysphonia. I was correctly diagnosed through a supermarket tabloid and have been successfully treated with poison injections. If there is a better treatment or a cure, it can come from anywhere and I consider it my responsiblility to seek better treatments.
If there is one thing I’ve learned from having Spasmodic Dysphonia, it is that modern medicine is compartmentalized and secrets abound. If there is a better treatment out there as there appears there might be in the case of Spasmodic Dysphonia, it is not the doctors or the drug companies that will point the way. It is now up to the victims of the disease to seek new treatments and to get the word out. Much as I’ve enjoyed not having to announce my Spasmodic Dysphonia at every turn, having a rare disease is not something that should ever be kept completely secret.
