This page contains information about cervical dystonia (neck dystonia) for medical professionals. For information on cervical dystonia for patients and carers please click here.
Cervical dystonia (often referred to as spasmodic torticollis) is the most common form of focal dystonia and and affects an estimated 18,000 adults in the UK. Cervical dystonia is characterised by involuntary often painful muscle contractions in the neck area causing abnormal movements and awkward posture of the head and neck.
Cerivcal dystonia is classified as a focal dystonia which means it affects only one region of the body. In the majority of cases the dystonia does not spread to other areas. However, in a minority of cases, other regions of the body also become affected and the dystonia is classified as a multifocal or segmental dystonia.
Cervical dystonia is usually an idiopathic dystonia. This means that torsion dystonia is the only clinical sign (apart from tremor) and there is no identifiable exogenous cause or other inherited or degenerative disease.
Cervical dystonia usually appears in mid-life but sometimes affect younger or older people. It is therefore classified as a adult-onset dystonia.
Cervical dystonia causes abnormal muscle contractions in the neck which can lead to the head and neck twisting (torticollis) or being pulled forwards (antecollis), backwards (retrocollis), or sideways (laterocollis). Symptoms may vary from mild to severe and the muscular spasms may result in pain and discomfort. Cervical dystonia often worsens during periods of stress or whilst walking and typically improve with rest, sleep or sensory tricks (geste antagoniste). For example people with cervical dystonia may find that placing a hand on the side of the face, chin, or back of the head, momentarily relieves the abnormal dystonic posturing.
Cervical dystonia is often misdiagnosed by GPs. Conditions that cervical dystonia is commonly mistaken for include neck damage, pulled muscle / muscle strain, slept the wrong way, head trauma and a psychological problem. It is a very under-recognised condition, with patients still reporting that it can take three or four years before a diagnosis is made by referral to a neurologist.
Indicators for a GP that the diagnosis may be cervical dystonia rather one of these other conditions include:
- Does not respond to physiotherapy or pain killers
- Does not clear up over time
- Symptoms sometimes ease with sensory tricks (such as putting a finger on the chin)
- Movement still present when patient unaware of being observed
Treatment for cervical dystonia usually involves regular injections administered by a neurologist. Some people also find oral medication helpful. Sensory tricks (e.g. touching a part of the head with a finger) and relaxation techniques may also be helpful as coping strategies.
Unfortunately there is not yet a cure for cervical dystonia. However, in the vast majority of cases, dystonia does not impact intelligence or shorten a person's life span. Most people do manage to develop successful strategies for living with dystonia combining treatment with pain control and sensory tricks to help with social situations.
For focal dystonias, the use of rehabilitative physiotherapy is well developed and structured. It aims
to give patients as much independence as possible. The objective of physiotherapy is to correct the affected function through specific interventions. This type of therapy is demanding for both the patient and the therapist (Bleton (2007)). Studies have shown that physiotherapy also enhances the effectiveness of BoNT in treating cervical dystonia but, at present, they have not identified which techniques are the most beneficial. In a Dystonia Society survey, among those referred to specialist neurophysiotherapy, 74% of patients with cervical dystonia reported it as being helpful.
Due to the specialised nature of dystonia, this treatment needs to be provided by a neurophysio-therapist familiar with the condition.
Dystonia is not a mental health condition but it can cause depression and anxiety due to the pain, stigma and social isolation of the condition. The overall rate of psychiatric symptoms amongst individuals with dystonia is often higher than that seen in the general population, with onset of the psychiatric symptoms prior to the physical symptoms of dystonia in some cases.
Psychological therapies such as cognitive behavioural therapy (CBT) and counselling can therefore play an important role. In addition, as stress and anxiety can exacerbate the physical symptoms of dystonia, effective management of these can also improve the outcome of managing the physical symptoms.
Mindfulness (autogenic training or meditation) can also be helpful. In a Dystonia Society questionnaire, mindfulness was reported helpful by 65% of those who tried it.
Pain resulting from dystonia can be in the muscles affected by spasms, or in joints where bone surfaces rub together due to twisting of posture. Sometimes, the resulting intractable pain can dominate a patient’s life and may be unresponsive to medication including that used to manage dystonia. Among those with cervical dystonia, a high prevalence of substantial pain is reported. Pain is also reported for other types of adult onset dystonia in some cases. Referral to pain management programmes has been shown to be effective for management of chronic pain caused by conditions such as dystonia.
A number of types of dystonia can affect nutrition. Dysphagia can also sometimes be a side effect of botulinum toxin injections for cervical dystonia. It is usually a short lived problem but can be frightening when it happens.
Dystonia can also lead to an inadequate diet:
- Those who have excessive movements may also find it almost impossible to keep still whilst eating, making hand to mouth feeding very difficult. As a result, finger foods and feeding cups are often used but these may not provide enough nutrition.
- Texture modified diets (e.g. puree diets) may be recommended due to dysphagia and can have negative impact on nutritional status due to their poor nutritional content.
Nutrition can be monitored using a screening tool (e.g. MUST) during home/clinic visits or inpatient admissions. A referral to the dietitian should be made if weight loss has occurred or if malnutrition is a concern. A dietetic referral is also required when dysphagia is present.The dietitian can suggest appropriate use of texture modified diets, food fortification and nutritional supplement drinks (e.g. Build Up™, Complan™, Ensure Plus™ and Fortisip™) to supplement diet.
Last reviewed March 2012
The Dystonia Society provides the information on this page as general information only. It is not intended to provide instruction and you should not rely on this information to determine diagnosis, prognosis or a course of treatment. It should not be used in place of a professional consultation with a doctor.
The Dystonia Society is not responsible for the consequences of your decisions resulting from the use of this information, including, but not limited to, your choosing to seek or not to seek professional medical care, or from choosing or not choosing specific treatment based on the information. You should not disregard the advice of your physician or other qualified health care provider because of any information you receive from us. If you have any health care questions, please consult the relevant medical practitioner.