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Dystonia is a chronic and often progressive neurological disorder that causes muscles to contract involuntarily.

These contractions cause repetitive twisting movements into abnormal positions that sometimes are painful.

Typically, dystonia is not life threatening, but it can be disabling. The involuntary movements can cause tendons to shorten and lead to permanent physical deformities.

Dystonia: what you should know

  • Sometimes dystonia affects only a specific group of muscles, other times many groups. Dystonia is classified by the group of muscles it affects, including the following:
    • Cervical dystonia (twisting the neck)
    • Blepharospasm (closing your eyes)
    • Writer’s cramp (hand cramping during writing)
    • Limb dystonia (twisting an arm or leg)
    • Generalized dystonia (involuntary movements throughout the body)
  • Childhood-onset dystonia often begins in the limbs, then progresses to other muscles. Adult-onset dystonia typically affects only one group of muscles, often your neck or face.
  • Often dystonia does not have a clear cause. Other causes include the following:
    • Several forms are inherited, especially childhood-onset dystonia. Not everyone with the gene develops dystonia, and environmental factors may play a role.
    • Environmental or other damage to the brain, including injury, drugs, infections or trauma, can cause dystonia. Sometimes dystonia can be a symptom of another disease, like Parkinson’s disease

How can I get help for dystonia?

Early signs of dystonia can be subtle. See your primary care doctor if you have any of the following:

  • Trembling of limbs, hands and face (tremor)
  • Voice problems
  • Rapid blinking or involuntary eye closure
  • Foot turning when walking
  • Twisting of a specific group of muscles

Care for dystonia at Rush

Dystonia has no cure, and there is no medication proven to slow its progression; however, with treatment, patients can get relief from their symptoms and lead active, full lives.

Specialists at the Rush Parkinson's Disease and Movement Disorders Center see a high volume of patients with dystonia and related diseases. They use this expertise to determine which treatment approach is right for each patient. Your customized plan may include one or more of the following:

  • Botulinum toxin injections are injected directly into affected muscles to control involuntary movements. This treatment weakens the injected muscles, which can decrease contractions and pain for several months. Specific types of dystonia respond well to these injections:
    • Dystonia of the face or eyes
    • Cervical dystonia, affecting the neck
    • Limb dystonia, affecting the arms or legs
    • Truncal dystonia, affecting the abdomen, back
  • Medications taken by mouth can influence certain brain chemicals that affect movement. Talk to your doctor about any side effects to manage the dosage and usage.
  • Deep brain stimulation (DBS) is a surgical approach that may help when medication cannot control fluctuations of your dystonia symptoms. In DBS, a neurostimulator delivers tiny electrical signals to areas of the brain that allow for more consistent movement control in patients.
  • Physical therapy and speech therapy can help you cope with the symptoms of dystonia. Sometimes, doctors suggest using splints, stress management and other treatments to supplement medical care.

Why choose Rush for dystonia care

  • Neurologists at Rush were the first in Chicago to offer botulinum toxin injections to patients as a treatment for neurological disorders, including dystonia.
  • The Rush team of neurologists and neurosurgeons have extensive experience in deep brain stimulation. These programs are consistently ranked among the best in the nation by U.S. News & World Report.
  • The Dystonia Study Group, a national group of dystonia experts, resides at Rush. This group also collaborates closely with the Dystonia Medical Research Foundation.
  • At Rush, you have access to clinical trials for therapies not otherwise widely available. Doctors at Rush are leaders in investigating new and better ways to help people with dystonia.

Departments and programs that treat this condition