SPASMODIC TORTICOLLIS (ST)

What is Spasmodic Torticollis (ST)?
Spasmodic Torticollis (ST) is a neurological condition characterized by abnormal muscle movements that can be very forceful and extremely painful, literally taking charge of a person’s life. ST is the most common form of a family of neurological ailments called dystonias. ST is a focal dystonia, one that affects just a certain portion of the body. ST generally appears very slowly, usually with a small pain in the base of the neck and/or a stiff neck followed, over a period of time, by rotating or pulling sensations. The pain can become so severe that trying to do normal, every day activities like sitting, standing, walking or eating may become very difficult. Symptoms will generally settle on one side of the neck; a shoulder may be higher; pain, numbness or tingling sensations may be felt in the arm or hand. If tremors are present, they will generally be in the head. ST will usually plateau in 5 years and there is a chance for remission.

Is ST a psychological or a psychiatric ailment?
No. For many years, physicians thought of ST as being a psychiatric condition. Indeed, some patients have suffered for many years, going from one doctor to another who told them that the problem is “in your head” and that they should see a psychiatrist. ST has also been confused with Parkinson’s Disease, Wry Neck, Cerebral Palsy and Muscular Dystrophy. Unfortunately, this confusion has caused many physicians to misdiagnose and thus ineffective treatments for the problem.

What causes ST?
Unfortunately, nobody knows exactly what causes this condition. It is thought to originate in the basal ganglia portion of the brain. An overabundance of a chemical called Acetylcholine is secreted from the basal ganglia through the nerve pathways to certain muscles of the neck. Although genetic studies are ongoing, heredity is cited in no more than 5-10 percent of cases. An accident or a trauma of some kind can trigger the onset of ST. In about half of the ST population, there is a family history of head or hand tremors (familial or essential tremors). We don’t have a good enough understanding of where and how the condition begins any more than we understand the things that will often fix the problem. For instance, in about 15 percent of cases, patients get better on their own and doctors are not sure why that happens.

How many people are affected by ST?
We are not exactly certain about the number of cases. The best estimates suggest that about 125,000 Americans have ST. But the impact of ST goes far beyond the people who actually suffer from the physical difficulties. When you consider the family members and/or friends who must alter their lives to care for ST patients, the total impact of ST reaches about 500,000 people. There are many victims who simply lock themselves away, being reclusive and not seeking medical attention, especially if they are told the problem is all “in their heads.”

If you have ST, is it possible to develop another form of dystonia as well?
Not only is it possible to develop a particular form of dystonia, but it is relatively common to develop other forms as well. Patients with ST may develop additional symptoms including forms of blepharospasm (involuntary contraction of the muscles controlling the eyelids) and other involuntary movements of various muscles. When the various forms of dystonia occur in the same general vicinity it is termed segmental dystonia.

Is ST life-threatening?
While ST is not life threatening, it can cause personality changes and severe depression that can lead to suicidal tendencies. Much help and considerable diverse support are needed from family and friends while, at the same time, too much “catering” can discourage patients from wanting to help themselves. Many ST patients exhibit anger and denial that can exacerbate the symptoms and make them worse.

What treatments are available?
Fortunately, people who contract ST need to understand that there are a number of treatments available to help them return to a more manageable and normal life. The first thing you should do if you suspect that you or someone you know may have this condition is to find a very good movement disorder neurologist. Working together, you can devise an overall treatment plan that may include oral medications like Klonopin, or injections of botulinum toxin, either Botox (type A) or Myobloc (type B). Additional treatments include physical therapy and massage therapy. In other cases, a surgical procedure called Selective Denervation, in which part of the nerves that go to the overactive muscles are cut, has been proven to be effective. Finally, maintaining a positive attitude can go a long way towards getting back to a more normal and productive life.

How can one find a very good movement disorder neurologist?
Due to the fact there is so little knowledge and sufficient research into ST and other forms of dystonia, there are very few neurologists that truly understand these disorders. Often, physicians innocently misdiagnose the problem as Parkinson’s Disease, Muscular Dystrophy, or other ailments. This is why education about ST is so important. Helping ST patients locate the best treatment available is part of our mission at ST/Dystonia, Inc. If you think you or someone you know has ST, please call us Toll Free at
1-888-445-4588. Our organization has a network of outstanding movement disorder neurologists around the United States to whom we refer new patients. You can also get additional information by visiting our web site, www.spasmodictorticollis.org.