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NATIONAL SPASMODIC TORTICOLLIS ASSOCIATION
OUR MISSION IS
To support the needs and well being of affected individuals and families;
To promote awareness and education;
To advance research for more treatments and ultimately a cure.
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. ST is usually accompanied by constant and extreme pain.
ST 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.)
ST 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.
ST 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 ST and how they cope with it.
While there is still no cure, many people with ST 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.
After you've had a chance to explore our website, please contact us if you have more questions, need more information, or if you would just like to talk.