Spasmodic Torticollis (ST)

What is Spasmodic Torticollis (ST)?

Spasmodic Torticollis (ST) is a neurological condition though 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. Where they meet, spasms occur which cause the head to be pulled either forward (anterocollis), backwards (retrocollis), sideways toward either shoulder (laterocollis) or to remain upright be be turned (rotational collis). Combinations of these positions may occur and tremors may also present themselves. "Torticollis" means "twisted-neck". It is a "focal" form of Dystonia (abnormal muscle tone). Other forms of focal dystonias are blepharospasm (of the eyes), oromandibular (of the jaw, mouth and tongue), dysphonia (of the larynx).

Studies show the average age of onset to be 46; the ratio of those with ST is 3 women to 1 man; and generally, but definitely not always, it will appear in people of Northern European heritage - this includes all of Europe, the Scandinavian countries, England and Ireland. No one has been able to explain any of this.

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What Are the Symptoms and Progression of ST?

ST generally appears very slowly, usually with a small pain in the base of the neck followed, over a period of time, by rotating or pulling sensations. The hand may have to be used to alleviate the pain/or to control the pulling. This is known as an antagonistic gesture.

The pain may become worse and, in many cases, severe. Trying to do any or all of the most common(taken for granted) everyday things such as sitting, standing, walking, eating becomes very difficult. For years many physicians thought of ST as a being psychological. IT IS NOT. Nor is it Parkinson’s disease, nor Wry Neck, nor Cerebral Palsy nor Muscular Dystrophy. This confusion is why ST is often mis and/or undiagnosed.

Symptoms will generally settle on one side of the neck; a shoulder 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 be in the head.

ST will usually plateau in 5 years and there is a chance for remission.

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What Causes ST?

Nobody knows for sure. It is idiopathic in origin (unknown). Although genetic studies are ongoing, heredity, at this time, occurs in no more than 5-10% of those surveyed. An accident, or a trauma of some kind, can trigger its onset. In approximately 50% of the ST population, there is a family history of head or hand tremors (familial or essential tremors).

Some medical people believe ST’rs are born with a predisposition to the torticollis gene and somewhere along life’s path, it is triggered out by aforementioned causes.

ST affects movement only and is not life threatening. It can affect personality changes, however, and much help and support is needed.

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What Treatments Are Available?

Fortunately, much progress has been made over the past several years.

Botox® is now termed the treatment of choice by the medical profession. Injections of this toxin are given to the active muscles of the neck, on average every 3 months. This procedure is called Chemo-Denervation. It is very beneficial in approximately 80% of all ST’rs. Within this group the average degree of success is 50-90%.

When combined with oral medications such as Klonopin or Artane or others, the degree of success may increase, BUT side effects can exist with these.

Antibodies to Botox® can build up in some ST’rs (approximately 15%) and people revert back to their original symptoms. In some cases, after a waiting period, some people are able to retake Botox®.

A surgical procedure which has been perfected is called Selective Denervation. Most neurologists would suggest you try Botox® and oral medications first but that is up to you to decide. Should you opt for this operation, be cautious who you choose as a surgeon as there are less than a handful of qualified ones available. With the right surgeon, results have been positive.

Other methods of treatment would be biofeedback (learning how to relax), physical therapy, stretching exercises, support group attendance, spiritual help, POSITIVE THINKING, but be sure these are done, where applicable, under the guidance of a person knowledgeable about ST.

An IMPORTANT POINT TO REMEMBER is that there are very few trained medical people that understand Spasmodic Torticollis, much less how to treat it. For best results see a neurologist but make sure it is a neurologist who specializes in MOVEMENT DISORDERS.

ST is not a symptom of any other disease. It is a movement disorder. It can be devastating BUT with regular care and attention YOU CAN LEAD A PRODUCTIVE LIFE. You may have to change some of your habits but the "ONLY THING PERMANENT IN LIFE IS CHANGE."

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Information provided by Dystonia, Inc.

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