The National Spasmodic Torticollis Association has started a campaign with Mission Fish to raise funds for Spasmodic Torticollis treatment search.
"Help us continue to provide information, answers questions, help with insurance and Medicare payment problems, and provide hope and moral support," writes the National Spasmodic Torticollis Association in its website.
Spasmodic Torticollis (ST) is a painful and debilitating neurological movement disorder. It is also known as "Cervical Dystonia." and is referred to by many as "torticollis." Approximately 3 in every 10,000 people - about 90,000 people in the United States - are known to suffer from ST.
This movement disorder is caused by a dysfunction of the brain. The symptoms are caused by intermittent or sustained contractions of the muscles around the neck which control the position of the head. This causes the head to lean to one side, or be pulled forward or backward. The shoulders may also be uneven and some patients experience tremors in the head or arms. Spasmodic Torticollis is usually accompanied by constant and extreme pain.
Spasmodic Torticollis can resemble other disorders including Parkinson's disease, epilepsy, muscular dystrophy and wry neck (an acute episode of pain and spasm in the neck that resolves itself in days or weeks.)
Spasmodic Torticollis can limit a person's ability to function. As a localized disability this disorder does not directly affect other body systems. Because it can be more severe during times of anxiety or stress, ST was once thought to be a psychiatric disorder. Research has shown, however, that while ST does indeed seem to originate in the brain, it is clearly a neurological disorder rather than a psychiatric one.
Spasmodic Torticollis is different in every person. If you have spasmodic torticollis, there are others who understand your pain and your frustration. There are people you can talk to without needing lengthy explanations. And there are people who can help: doctors who can provide treatment, patients who can share coping tips and inspiration, and organizations like the National Spasmodic Torticollis Association who can provide information and other forms of support.
NSTA is here to help you whether or not you are a member of our organization! In addition to our office staff, we have support group leaders and special "contact" people around the country - maybe someone close to you--who would be happy to talk to you about Spasmodic Torticollis and how they cope with it.
While there is still no cure, many people with Spasmodic Torticollis can relief from the pain and disability caused by this neurological disorder using a combination of treatments including medications, botulinum toxin injections, physical therapy, "alternative" treatments and stress reduction techniques. If none of those methods work for you, as a last resort, there are two surgical procedures called Denervation Surgery and Deep Brain Stimulation that may help.
First symptoms generally occur slowly or intermittently and are usually noticed when a person tried to keep his or her head straight, for example, while driving. Family or friends are often the first to see the sign, asking questions like, "Why does your head look like it's on crooked?" Within two to five years, progression of the disease reaches a plateau without further worsening. The pain associated with Spasmodic Torticollis is almost always focused in one place, frequently the side of the neck or the back of the shoulders.
There is no uniform treatment for Spasmodic Torticollis, but oral medications are usually the first line of defense. Should these fail, the approved treatment of choice is Chemodenervation which involves Botulinum Toxin injections in the contracting muscles. Over the years, this has proven to be a safe and effective method of relieving pain and lessening spasms.