Prognosis and duration
Focal dystonias
Blepharospasm
This condition is likely to stabilise after a few years and not improve or get worse. Regular treatment will be required to preserve useful vision. If treatment fails at any point then needs are likely to arise in a severe case.
Oromandibular dystonia (cranial dystonia)
This condition is likely to stabilise after a few years and not improve or get worse. In a minority of cases it will be reasonably controlled with regular treatment. If uncontrolled, needs may arise from the effect of the condition on mental health.
Spasmodic dysphonia or laryngeal dystonia
Even when severe there are no care or mobility needs associated with this condition. Needs may arise from the effect of the condition on mental health.
Spasmodic torticollis or cervical dystonia
This condition is likely to get worse over several years and stabilise. Those cases with significant pain that are uncontrolled by treatment are most likely to have needs and these needs are likely to persist. Those with milder symptoms who are of young age and are not likely to have needs are most likely to recover from the condition, although permanent remission is rare.
Hemifacial spasm
This dystonia behaves like other dystonias, it get worse over several years and then becomes stable. In most cases it can be controlled with regular botulinum toxin injections and rarely curative surgery is used. Without surgery ongoing treatment is needed to control symptoms. The condition does not tend to go away by itself.
Writer’s cramp or hand dystonia
This condition tends to persist, particularly if severe. If needs are identified either because a person has personal care needs requiring manual dexterity or because the condition is exceptionally severe these are likely to be enduring.
The next sections cover other types of dystonia, which are less common but which can be very disabling.
Generalised dystonias
Idiopathic (primary) generalised Torsion dystonia
This condition is enduring and is unlikely to respond well enough to drugs for walking to be resumed. There may be needs associated with mental health problems related to having a severe physical disability in addition to any physical needs identified. Significant change in level of disability is unlikely unless Deep Brain Stimulation surgery is undertaken. It may take a long time after such surgery for maximal reduction in disability to be achieved. If DBS is used disability is likely to be reduced in most cases and dramatically so in many with resumption of normal walking ability and the ability to use the upper limbs normally with minimal or mild Dystonic movements. A stable condition is likely to be reached around 2 years after surgery.
Dopa-responsive dystonia-parkinsonism (Segawa’s Syndrome)
The partial condition responds very well to drug treatment with levodopa. In the typical case there is likely to be severe disability prior to diagnosis that resolves with diagnosis and treatment. Long term effective treatment with none of the expected side effects associated with levodopa is anticipated.
The homozygous type severe case is likely to be and remain severely disabled with mental retardation, seizures and enduring physical and mental impairment related to severe developmental delay.
Rare dystonias
Myoclonus dystonia
This condition stabilises after a few years. Other dystonia conditions may develop later in life in addition to Myoclonus.
Tardive dystonia
This condition usually resolves when the causative drug is stopped. If not stopped the condition gets progressively worse and may be permanent. The condition is unlikely to improve very much once present for a year.
Tardive dyskinesia
This condition usually resolves when the causative drug is stopped. If not stopped the condition gets progressively worse and may be permanent. The condition is unlikely to improve very much once present for a year.
All information must be taken into account when considering the duration of disabling effects and the duration of disabling effects must be based on the particular circumstances of the individual claimant.
Amended May 2009
