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Frequently Asked Questions

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WHAT IS SPASMODIC TORTICOLLIS?

Spasmodic Torticollis (ST) is a neurological disorder that affects the muscles of the neck, causing the head to pull, turn, lean or jerk to one side, backwards or forwards, sometimes with shaking movements.  Pain in the neck is often associated with it, and in some cases this is severe enough to be disabling. 

It is generally a chronic condition which can begin at any age and may last a lifetime.  About three people in 10,000 are affected, meaning more than 6,000 people in Australia have the condition, many of whom would not be diagnosed as having it. 

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WHAT ARE THE SYMPTOMS?

ST can begin gradually or suddenly, with the head tending to rotate or turn to one side, sometimes with a slight tremor.  It will usually reach a plateau after two to five years. 

For up to 10 per cent of people with ST there is a spontaneous recovery usually within five years of onset, and other people may experience an easing of symptoms. 

Remission seems to be more common for those in whom the condition has occurred in a milder form, or began before 40 years of age.  It can recur after this remission. 

Many people with ST are unable to work while other may find it difficult or impossible to drive, eat, read or watch television.  It is generally a localised disability that does not affect any other body functions, including the mind. 

Touching the face may cause the spasms to cease, and sleep also brings a stop to spasms.

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THERE ARE DIFFERENT FORMS OF ST

ST, also known as cervical dystonia, belongs to a family of disorders called dystonia in which muscles spasm involuntarily, often leading to unusual movements or postures. 

Various dystonias can separately affect: muscles around the eyes, causing them to shut for up to several hours at a time; the jaw, tongue and mouth, causing the mouth to pull open or shut tight, sometimes affecting swallowing and speech; speech muscles, causing strained or forced speech; or muscles in the forearm or hand, causing cramps when writing. 

While it is unusual, people with ST can experience one or more of these other dystonias. 

There are three different types of ST:

  • Tonic: causing sustained turning of the head to one side;
  • Clonic: causing shaking movements of the head; and
  • Mixed: a mixture of tonic and clonic. 

Although it can resemble other disorders, ST is NOT:

  • wry neck (an acute episode of pain and spasm of the neck muscles that disappears in days or weeks);
  • a form of Parkinson’s disease (a chronic neurological condition causing shaking, stiffness and difficulty with movement);
  • a psychiatric illness (the movements of the neck are often more severe during times of anxiety, but anxiety itself does not cause the movements);
  • a form of epilepsy or seizures;
  • a muscle disease such as muscular dystrophy. 

  

ARE THERE AGGRAVATING FACTORS?

Generally, patients experience fluctuations in the severity of symptoms.  ST may sometimes be aggravated by writing, emotional stress, menstruation, pregnancy, reading, walking or trying to do things with two hands.

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WHAT CAUSES IT?

ST like other dystonias, is believed to be caused by a chemical imbalance in a part of the brain called the basal ganglia. 

The basal ganglia is thought to act like a computer, sorting messages from the brain and then telling the muscles how to carry them out.  The chemical imbalance confuses the messages, causing some muscle groups to contract involuntarily. 

Extensive research is being carried out into the condition and new leads about the cause are being investigated.  These include genetic errors and the possibility that different parts of the brain are causing the incorrect movements and posture. 

Although the condition can begin at any time in life, it most often starts in the 40-50 year age group.  About three women develop it to every two men. 

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IS DIAGNOSIS EASY?

Most medical practitioners and other health professionals fail to recognise the symptoms of ST and as a result sufferers often pursue a long and tortuous route in seeking a diagnosis.  In this quest, most sufferers seek a cure from family doctors, psychiatrists, physiotherapists, chiropractors, acupuncturists and through alternative medicine, with little or no effect, before they are eventually diagnosed with the condition.  The most skilled help will usually come from specialist neurologists. 

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IS THERE ANY TREATMENT?

At present the condition remains poorly understood and not easily recognised. 

Up until the late 1980s, treatment usually involved high doses of drugs which often produced unpleasant side-effects and are generally ineffective. 

Some drugs can offer limited help.  They include: Clonazepam, Artane, Lioresal, Tegretol, Haloperidol, Sinemet, Valium, anti-depressants, Lithium and Reserpine, however what one person finds helpful might not help another. 

Wearing a cervical collar or other orthopaedic device to straighten the neck or control the spasms is rarely useful. 

Physiotherapy and exercise may be helpful when taken in conjunction with medication. 

A more recent treatment involves the injection of tiny amounts of botulinum toxin into affected muscles.  This blocks the unwanted nerve impulses which cause the muscle spasms. 

Treatment with the toxin is still under trial but results are promising and the side-effects are few.  Treatment needs to be repeated every few months as the effect of the toxin wears off. 

Patient response to the treatment varies from total remission to no discernible benefit, however up to 80% of people undergoing this therapy enjoy some relief. 

Selective peripheral denervation, a surgical procedure in which some nerves in the affected muscles are isolated, can provide some relief in selected cases.  It is usually only considered if other forms of treatment are ineffective, not as a first choice treatment. 

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IS HELP AVAILABLE?

The information on this page was written by people with ST and specialist doctors.  You are not alone. Coping with the condition is usually always a problem until you come to accept it and learn to live with it.  ST won’t kill you, but it can interfere with your quality of life. Support groups can help some people to better cope with it. 

It is quite natural when you learn the nature of the condition to go through stages of shock (why me?), despair and depression, then acceptance.  This evolution may take time. 

One of the distressing things about the condition is that, depending upon severity, it can make you look different.  It is natural to be embarrassed by it, but much of your fear may be in your own mind rather than in other people’s.  Your friends and acquaintances know who you are.  Explain what you have and they will soon accept it.  Also, meeting new people may be difficult at first, but explaining your situation will make it easier.

 

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