Is DBS for me? - Dystonia
Affecting approximately 300,000 people in North America of all ages, dystonia causes uncontrollable twisting and jerky movements. Deep brain stimulation (DBS) may be considered for dystonia patients who have not responded to oral medications or Botox injections. DBS for dystonia was approved by the FDA under a Humanitarian Device Exemption (HDE) in 2003 for individuals 7 year of age and older. A study in the New England Journal of Medicine found DBS surgery reduced medication use to treat dystonia.
Dystonia results in uncontrolled twisting or slow movements and jerky movements of the head, limbs, or neck. The condition can be reduced or disappear during sleep and can worsen with stress. Scientists have pinpointed two causes of dystonia – generalized (inherited) or focal (affecting only one body part).
Dystonia may be caused by other health conditions such as cerebral palsy, encephalitis, liver disease, and Huntington’s chorea. Sometimes two conditions interact to cause dystonia when neither one by itself would cause a problem; for example, medication and a brain injury.
Dystonia can affect one or more different parts of the body. Patients may notice:
- Foot cramps
- One foot dragging
- Uncontrolled turning or pulling of the neck
- Handwriting that decreases in size
- Rapid, uncontrollable blinking
- Voice or speech difficulties
Patients and their families may only notice symptoms after a long period of exertion, stress, or fatigue. Over time, symptoms may become more widespread and easier to recognize.
Your doctor will perform a physical exam that may focus on the nervous and muscular systems. You may be asked questions relating to family and personal health history along with questions about injuries, illnesses, and stress. Diagnosis may require ordering of lab tests or imaging studies to rule out other causes:
- CT or MRI
- CSF analysis
- Genetic studies
- Blood or urine analysis
While there may not be a cure for dystonia, there are a number of treatment options available. There is not one regular course of treatment – the schedule should be customized to each patient’s condition. The goal of dystonia treatments is to lessen the symptoms of muscle spasms and awkward postures, helping you function with the fewest side effects possible.
Dystonia is frequently treated with medication - there are a number of drugs that improve the condition. These medicines can be used alone or with others, depending on what combination works best for your condition. A common treatment uses Botox injections to block nerve signals that cause dystonia.
One common stop along the treatment course is the therapy room. Whether it’s physical, occupational, water, speech, or voice – these therapies help patients gain greater control over their body. Similar complimentary therapies may also be recommended, including relaxation techniques, yoga, meditation, Pilates, or acupuncture.
Treatments often begin with the least invasive method, moving on to more complex surgical procedures, like DBS, if symptoms do not improve.