ADDER - Spasmodic Torticollis - An Interim Definition

Action for Dystonia, Diagnosis, Education & Research

A.D.D.E.R.

	Patrons:	Denise Robertson
		Dr Miriam Stoppard
		Vicki Archer

This paper is designed as an assistance to people in defining what Spasmodic Torticollis is, how it can affect people and helping to determine which type you might have. The information is taken from the Epidemiological Survey of Dystonia (ESD), which was completed after six full years of research from 6th May 1993 to 5th May 1999 with 937 people registered in the North East of England and over 1,600 people registered today.

Dvstonia is a previously little known neurological disease of the central nervous system and consists of a group of related movement disorders, characterised by involuntary and prolonged spasms of muscle contraction. It has been classically defined as "a syndrome of sustained muscle contractions, frequently causing twisting and repetitive movements, or abnormalpostures." It can affect the whole body or a single part of the body or some combination between the two. Although it is nearly 90 years since this neurological disorder was first named, relatively little research had been undertaken into dystonia for the first 65 years, apart from the odd periodical review.

Spasmodic Torticollis (Cervical Dystonia) is a form of focal dystonia, which affects the muscles of the neck, causing the head to tilt (laterocollis), or to twist to one side (rotational torticollis), to go forward (anterocollis), or to go back (retrocellis). All these particular forms of dystonia are collectively called "torticollis" and "spasmodic" is the word used to describe it further. It can often result in a trembling sometimes referred to as a "No-No" tremor. Both genders are affected although our research has shown that twice as many woman are affected as men and it is more common in the middle aged. Based on the North East research, 43.4% of patients had a form of Cervical Dystonia and it has been predicted that its prevalence is approximately 1 in 6,000 people.

Treatment varies but the most common is injection of Botulinum Toxin which can give some relief from the often continued presence of pain and discomfiture and has revolutionised the treatment of Spasmodic Torticolfis (ST) in recent years. There is sometimes temporarily relief from spasms by patients going into remission but this is restricted to approx. 10% of patients and is most common only for a few days or weeks. This research has shown that ST is far more prevalent than previously thought and the research will continue in the North East for several years to come.