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What is Cervical Dystonia?
Cervical Dystonia often referred to as spasmodic torticollis, is a particular type of focal dystonia that affects the muscles of the neck. It presents in different forms as follows: torticollis, laterocollis, anterocollis and retrocollis.
Spasmodic Torticollis is the term commonly used to describe all forms of cervical dystonia. You may find other terms being used to describe your condition and this can be confusing. An explanation of these terms and explanatory diagrams are given below.
Many people will have more than one type of cervical dystonia. For instance, an individual with torticollis may also suffer from anterocollis.
As the muscles of the neck are overactive, the sufferer’s posture may be affected causing pain and stiffness in other muscles not directly affected by the dystonia.
Information in the USA suggests that as many as 30 in 100,000 people have cervical dystonia. Accurate statistics are difficult to report because of those sufferers who continue to go undiagnosed in the community. The figure, therefore, may well be higher.
Cervical dystonia is reported as more common in females and affects people of all ages though it usually occurs in the 40-50 age-group.
There are many different degrees of disability. Where some people with cervical will have few symptoms and little pain, others may suffer a high degree of disability and chronic pain, requiring treatment. Similarly, some sufferers have much fewer symptoms in the morning, particularly early in the disease, and symptoms return as the day goes on allowing more function early in the day.
There is no known cure for cervical dystonia. However, treatments that can improve life for the sufferer do exist.
What are the Different Forms of Cervical Dystonia?
The most common of the cervical dystonias. The chin and nose rotate to one side and may stay in this position (tonic) or may turn to the side only intermittently and then released (clonic). A tremor of the head may also be seen. The muscles most commonly involved are the splenius capitis, trapezius and levator scapulae on the same side and the sternocleidomastoid on the opposite side.
This is the second most common cervical dystonia. The head is pulled to one side and down to the shoulder. Sometimes one shoulder lifts up. The muscles most often responsible are the splenius capitis, scalene, trapezius, levator scapulae. In this instance the sternocleidomastoid of the same side may be involved. The individual has difficulty maintaining the head in a central position and has even more difficulty turning the head to the other side.
The chin is pulled down towards the chest. Both sternocleidomastoid and scalene muscles are often involved. This may cause problems with swallowing, speaking, socialising and vision.
The head is pulled backwards towards the spine. The muscles usually involved are the neck extensors. Again communication, vision and swallowing may be affected.
Living with Cervical Dystonia
Quality Of Life Factors
Some people with a mild form of cervical dystonia may have little in the way of day to day problems, but for some sufferers their condition has an impact on many aspects of their life. Since the treatments available for Cervical Dystonia rarely solve all of the problems, it’s largely up the individual to find solutions which improve their comfort.
Make sure your workplace is as safe and comfortable as possible for you, by making changes to equipment and furnishings. Take into consideration your limitations in mobility and vision. Choose someone you can confide in comfortably and tell them about your condition. Whether you tell others or not is a personal choice. Do not be embarrassed if you should bump into things a little more frequently than others. A simple apology will suffice. Show a good work ethic and that you are willing to work with others and you will be admired for who you are.
Families can provide an effective support system for the sufferer. Remember that they need you to confide in them or they will not be able to recognise your needs. Share the good times as well as the bad and consider their feelings regarding the changes to your lifestyle. Discuss the changed roles in the household relative to your condition.
Consider your needs as well as the needs of others. Take all measures to keep yourself in good physical and mental health. It is important to keep pain under control and reduce your symptoms wherever you can. As is the case with any long-term illness, a positive attitude will enhance a sufferer’s quality of life.
The symptoms of Cervical Dystonia can be more obvious when walking, holding a particular posture, or when the person is feeling anxious or stressed. This poses problems in the social setting. Sufferers often feel that all eyes are upon them, but this is rarely the case. It is more likely true that they are more aware of their body than an observer. People must learn to cope with this problem in their own way. Some people prefer to ignore their disability while others prefer to tell people of their condition at the first meeting. It is important that social activities be maintained in such a way as to prevent social isolation.
Cervical Dystonia can adversely affect an individual’s ability to drive safely. However, modifications can often be suggested, for instance adjustments in mirrors or additional mirrors or a change in the seating position. This is well worth pursuing as driving equals independence for many sufferers.
‘Sensory tricks’ or ‘gestes’
Many sufferers have trigger spots, usually on the face or head, which they can touch and their neck and head will return to normal, or near normal posture for a time. Sometimes even just thinking about the gesture will achieve the same objective. It is not known how or why this mechanism works, but it can assist the sufferer in both comfort and in social situations. There is promising research about the potential of using ‘sensory tricks’ for future treatments. Some people find that posturing and positioning themselves in a certain way will also help them regain control of their necks and hide their disability. Ensuring you always sit in a position that is advantageous to you, whether at the theatre, a dinner party, or engaged in general conversation, will help your confidence in a social situation and allow you maximal vision. This also minimises spasm as you do not have to adopt a forced posture.