What is dystonia?

Dystonia is a movement disorder which involves sustained involuntary muscle contractions. This often causes twisting and repetitive movements, or abnormal postures.

Under normal circumstances, when some muscles contract, others need to relax in order to allow a smooth and controlled movement of the particular part of the body. In dystonia, different muscles contract in opposition to each other in an uncontrolled way.

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What are the main types of dystonia?

Dystonia can affect many areas of the body (generalised dystonia), or it can only affect a particular region (focal dystonias).

Types of focal dystonia include cervical dystonia ('wry neck'), writer's cramp, and golfer's 'yips'. If dystonia begins in childhood there is a significant risk that it may spread to other parts of the body.

Most cases of dystonia occur spontaneously or are genetic (primary dystonia), however, some are due to cerebral palsy or certain medications (secondary dystonia).

How is dystonia treated?

Dystonia is usually treated with medications and/or Botox injections, however many patients continue to progress despite these therapies.

Some specialists offer a destructive procedure, known as denervation, however such procedures carry significant risks.

In patients with primary dystonia, particularly generalised dystonia and spasmodic torticollis, deep brain stimulation (DBS) offers a high chance of benefit with a low risk of complications. DBS is also used in some cases of secondary dystonia, such as post-traumatic dystonia and cerebral palsy.

What are the alternatives to surgery?

At present, the only alternatives to surgery are medications and Botox.

You should check with your neurologist to ensure that you have tried all of the appropriate medications before seriously considering surgery. Your neurologist may choose to refer you to another neurologist with expertise in the management of such conditions.

What are the reasons for surgery?

When medications and Botox no longer work well or their side effects are too severe, surgery may be of value. The procedure most commonly used to treat Dystonia is Deep Brain Stimulation (DBS). This traditionally targets a part of the brain known as the pallidum (‘globus pallidus internus, or GPi’), however very recently there has been good quality data showing that the subthalamic nucleus (STN) may also be an excellent target for deep brain stimulation to treat dystonia. 

What happens before surgery?

Several weeks before surgery you will have an MRI scan of your brain. This will be used to plan and conduct your operation. You will also be seen by a neuropsychologist and by one of our movement disorder surgery neurologists. We will arrange all of this for you.

What do you need to tell the doctor before surgery?

  • It is important that you tell your surgeon if you:
  • Have blood clotting or bleeding problems
  • Are taking aspirin, warfarin, or anything else (even some herbal supplements) that might thin your blood
  • Have high blood pressure
  • Have any allergies
  • Have any other health problems

Who may benefit from surgery?

Patients with generalised dystonia or spasmodic torticollis have a high likelihood of success following DBS. Patients benefit the most if surgery is performed early, before rigid deformities have set in.

What are the benefits of surgery?

Reduction or abolition of abnormal dystonic movements, improved mobility, reduced pain, and improved quality of life are the most important benefits of surgery. These benefits typically take around 6-12 months to reach their maximum. Pain is the first symptom that usually improves after deep brain stimulation, and this often occurs within days.

What are the risks of surgery?

There is a very small risk of infection, haemorrhage (bleeding), stroke, and seizures (epilepsy). The risk that the surgery could cause death is extremely small (much less than 1 in 100). Over 95% of patients come through surgery without significant complications.

How successful is surgery?

Surgery for dystonia usually results in a fewer symptoms and an improvement in quality of life. Some patients can return to their previous occupation following successful treatment. Overall, around 70% of patients will significantly benefit. The magnitude of this benefit is typically 50-70%. Pain is typically the first symptom to improve after deep brain stimulation.

How long will the benefits last?

Benefits vary from patient to patient. Benefits are typically long-lasting, and many patients have been followed up for longer than 6-8 years with ongoing benefit. You will need to have your battery changed (this takes around 20 minutes and is done under local anaesthesia) every 18 months or so.

What happens when you go home?

You will need to take it easy for 6 weeks. You should do an hour of gentle exercise such as walking, every day or two.

Your GP should check your wounds 4 days after discharge. You should not sign or witness any legal documents until you have been seen by your GP. You will be given instructions about when the staples need to be removed (this is done by your GP or the Precision Neurosurgery Practice Nurse).

You will be reviewed after a number of weeks by your neurologist and neurosurgeon. You should not drive a motor vehicle or operate heavy machinery until they give you the go ahead.

If you have had deep brain stimulation you will also be given some detailed information about things you must avoid, such as metal detectors at airports. It is critical that you read this information thoroughly.

What should you tell your doctor about after surgery?

  • Tell your doctor if you are experiencing:
  • Increasing headaches
  • Fever
  • Swelling or infection of the wounds
  • Leakage of fluid from the wound
  • Fitting (seizures)
  • Abnormal sensations or movements in your face, arms or legs
  • Weakness or numbness
  • Drowsiness
  • Any other concerns