I'm making this page about Spasmodic Dysphonia as after being diagnosed with this voice problem in 2007, I wanted to share my story and explain to people about this relatively unknown condition. I also wanted other SD sufferers to know they are not alone in dealing with this problem and they can visit my forum for people with Spasmodic Dysphonia to share views, treatments, exercises etc at Spasmodic Dysphonia Forum
Explanation Of The Condition & My Story
Spasmodic Dysphonia (SD) is a voice disorder that involves involuntary "spasms" of the vocal cords during speech causing interruptions and affecting the voice quality. SD can cause the voice to break up or to have a tight, strained, or strangled quality. SD was first described by L. Traube in 1871 as a spastic form of nervous hoarseness. Traube gave it the name of "spastic dysphonia." but today, the terms "spasmodic dysphonia" or "laryngeal dystonia" are the most current and appropriate terms.
There are three types of Spasmodic Dysphonia - Adductor, Abductor and Mixed.
Adductor - Involves sudden involuntary muscle movements or spasms cause the vocal folds (or vocal cords) to slam together and stiffen. These spasms make it difficult for the vocal folds to vibrate and produce voice. Words are often cut off or difficult to start because of the muscle spasms. Therefore, speech may be choppy and sound hoarse. The voice is commonly described as strained or strangled and full of effort. Surprisingly, the spasms are usually absent while whispering, laughing, singing, speaking at a high pitch or speaking while breathing in. Stress, however, often makes the muscle spasms more severe.
Abductor - Involves sudden involuntary muscle movements or spasms cause the vocal folds to open. The vocal folds can not vibrate when they are open. The open position of the vocal folds also allows air to escape from the lungs during speech. As a result, the voice sounds weak, quiet and breathy or whispery. As with adductor spasmodic dysphonia, the spasms are often absent during activities such as laughing or singing.
And finally Mixed - This involves muscles that open the vocal folds as well as muscles that close the vocal folds and therefore has features of both adductor and abductor spasmodic dysphonia.
The exact cause of spasmodic dysphonia is unknown and it can can affect anyone. The first signs of this disorder are found most often in individuals between 30 and 50 years of age. More women appear to be affected by spasmodic dysphonia than men.The general medical consensus is that SD is a central nervous system disorder and a focal form of dystonia. Dystonia is the general neurological term for a variety of problems characterized by excessive contraction of muscles with associated abnormal movements and postures.
Dystonia disorders are thought to be due to abnormal functioning in the area of the brain called the basal ganglia. The basal ganglia, which are structures situated deep in the brain that help coordinate movements of the muscles throughout the body.
In some cases, spasmodic dysphonia may run in families and is thought to be inherited. Research has identified a possible gene on chromosome 9 that may contribute to the spasmodic dysphonia that is common to certain families. In some individuals the voice symptoms begin following an upper respiratory infection, injury to the larynx, a long period of voice use or stress.
Because the voice can sound normal or near normal at times, spasmodic dysphonia was once thought to be psychogenic, that is, originating in the affected person's mind rather than from a physical cause. While psychogenic forms of spasmodic dysphonia do exist, research has revealed increasing evidence that most cases of spasmodic dysphonia are in fact neurological or having to do with the nervous system (brain and nerves).
At present there is no known cure for spasmodic dysphonia and current treatments available only help reduce the symptoms of this voice disorder. Voice therapy may reduce some symptoms, especially in mild cases.The treatment available at the moment for reducing the symptoms is injections of very small amounts of botulinum toxin (Botox) directly into the affected muscles of the larynx. The toxin weakens muscles by blocking the nerve impulse to the muscle. The injections generally improve the voice for a period of three to four months after which the voice symptoms gradually return. Reinjections are necessary every 3-6 months indefinitely to maintain a good speaking voice. Initial side effects that usually subside after a few days to a few weeks may include a temporary weak, breathy voice and/or occasional swallowing difficulties.
I was official diagnosed by a doctor in March 2007, but had first noticed a problem with my voice in about 2002. I worked in a job where I was on the telephone constantly, all day everyday and had been since 1998. I started to notice that the odd word in my sentences started to sound funny and realised if I repeated that particular word, no matter how hard I tried to make it sound 'normal' it wouldn't. At first, I just ignored it and battled on with my speech. But then people started to notice, which made me even more self conscious about this problem.
Over the following years it was a downward spiral from there and the spasms and breaks in my speech became more frequent, nearly ever other word. I dreaded having to talk to people and hated talking on the phone as it seemed to make the condition worse, the muscles in my throat would just tense up so tight that it felt like I was being strangled by myself! I had to literally force and push the words out, it was extremely tiring having to put all this effort into speaking and by the end of the day I was exhausted.
I started to do some research on the internet to find out what this problem was and I listened to a clip of a patient with SD, I knew instantly that this is what I had got. I first visted a speech therapist and I had a few sessions with her but the exercises didn't seem to initially help my voice. She recommended speaking to the ENT (Ear, Nose & Throat) doctor at the local hospital as he was a specialist in Spasmodic Dysphonia.
So next I was referred to this ENT doctor who inspected my throat using Fiberoptic nasolaryngoscopy, a method whereby a small lighted tube is passed through the nose and into the throat, a helpful tool that allowed him to evaluate my vocal cord movement during speech. He confirmed SD immediately and explained the only current treatment was botox injections into my vocal chords every three months. I tried this method for about a year but I wasn't getting the desired results so I no longer have them.
At the moment I am just practicing with different exercises and my speech does seem to have improved slightly over the past year, so I will keep persevering. I have read and spoke to some people who have largely overcome SD using various techniques, who are a great inspiration and give me the hope that I may one day be able to overcome SD too.
I found SD to be quite a life changing condition, most people take their voice for granted and losing that privilege is something that is hard to come to terms with. So I decided to set up a forum for other SD sufferers so we can chat about it on there, get support / advice from each other and just generally talk to someone else who understands and is in the same boat.
I hope this forum will be a lifeline for other SD sufferers, we can all fight this battle together. It can be found here Spasmodic Dysphonia Forum
