Dystonia - Brain Reorganisation After Surgery | Action Medical Research | Children's Charity

Dystonia - brain reorganisation after surgery

This research was completed on 31 July 2010

Published on 6 October 2006

A breakthrough in brain surgery is offering hope to the estimated 2,500 people in the UK with generalised dystonia.1 These people endure prolonged muscle spasms that contort their bodies into awkward and painful positions. While surgery brings huge benefits to some, it has no effect on others. Researchers are trying to find a way to identify who is most likely to benefit, so surgeons can offer treatment to the right people.

What's the problem and who does it affect?

Dystonia causes life-long disability

People with dystonia suffer prolonged muscle spasms that they can’t control. Part of their body may writhe or twist, or become contorted into an abnormal posture, making it difficult, or even impossible, to move normally. One of the most well-known, though least severe, types of dystonia is writers’ cramp.

The researchers working on this study are trying to help people with the more severe form of generalised dystonia, which usually starts in childhood and affects muscles all over the body. Sufferers endure exhausting and painful muscle spasms that are often so severe they cause serious lifelong disabilities. Drug treatment can help, but its effects are often limited and side effects are common.

Surgeons lack vital information

A new surgical technique called deep brain stimulation is revolutionising the treatment of severe dystonia. It can substantially reduce disability and give people more control over their movement.

But surgery doesn’t work for everyone and surgeons can’t always predict who will benefit most. It’s also expensive and labour intensive. The uncertainty surrounding who is most likely to benefit is threatening to limit the use of this exciting new procedure.


What is the project trying to achieve?

Predicting who will benefit from surgery

Dystonia may be inherited in the genes or acquired as a result of brain injury, such as that caused by a lack of oxygen at birth. Deep brain stimulation seems to benefit almost everyone who inherited their disorder, but its effects are extremely variable in people with brain injuries. In this project, researchers are searching for a way to predict who will benefit.

They suspect that deep brain stimulation works by encouraging the brain to reorganise, or ‘rewire’, into a better configuration. Researchers are testing their hypothesis that the patients who respond most to treatment have the highest capacity for this rewiring.

The team is studying the effects of deep brain stimulation on 20 patients with inherited or acquired dystonia. They are monitoring changes in the brain using electrical recordings from muscles, magnetic brain stimulation, and MRI scans. They are looking for any correlation between the degree of rewiring and improvements in symptoms.

What are the researchers' credentials?

Project LeaderProfessor J C Rothwell, MA, PhD
Project team
  • Professor Kailash P Bhatia MD FRCP
  • Professor Marwan Hariz MD PhD
  • Dr Patricia Limousin MD PhD
  • Dr Stephen HD Tisch MBBS FRACP
  • Professor Tarek Yousry
  • Dr med Habil
LocationSobell Department of Motor Neurosciences and Movement Disorders, Institute of Neurology, London
Other locations
  • School of Medicine, Health Policy and Practice University of East Anglia
  • Department of Orthopaedics, Norfolk and Norwich University NHS Trust
  • Occupational Therapy Department, Norfolk and Norwich University NHS Trust
DurationThree years
Grant awarded6 July 2006
Start date1 September 2006
End date31 July 2010
Grant amount£174,814.00
Grant codeAP1068

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The project leader, Professor John Rothwell, is an internationally renowned expert in the physiology of movement disorders, with over 400 peer-reviewed publications to his name.

Dr Steve Tisch, who is principally responsible for undertaking the research, is a neurologist and researcher with experience of using deep brain stimulation to treat dystonia. He published pilot studies that laid the groundwork for this project. The other members of the research team are all internationally recognised leaders in their respective fields.

The Institute of Neurology, where the research will take place, is a centre of excellence for research in neuroscience and has been awarded the top 5*A ranking. It houses one of the largest referral centres in the UK for people with movement disorders.

Who stands to benefit from this research and how?

Making sure the right people get the chance of surgery

Researchers hope their studies will lead to new tests that will allow surgeons to predict who is most likely to benefit from deep brain stimulation. They envisage that these tests will work by measuring the brain’s capacity for rewiring.

The team hopes its work will mean that surgeons can offer the potentially life-changing benefits of deep brain stimulation to the right people. It may allow surgeons to identify patients who might otherwise have been considered unsuitable for surgery. It would also mean that people who are least likely to benefit don’t have to undergo surgery unnecessarily.

People who undergo deep brain stimulation can experience remarkable improvements. For example, some learn to walk again after needing a wheelchair. Improved methods of patient selection would also ensure a more cost-effective delivery of treatment.

Looking further into the future, a deeper understanding of the role of brain rewiring in treating dystonia may give researchers the information they need to develop other new therapies, so they can help even more people.


  1. Butler AG, Duffey PO, Hawthorne MR, Barnes MP. An epidemiologic survey of dystonia within the entire population of northeast England over the past nine years. Adv Neurol. 2004;94:95-9.
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