The KBS Dystonia Foundation

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The Kurt B. Seydow Dystonia Foundation

WHAT IS DYSTONIA? Dystonia is a neurological movement disorder characterized by involuntary muscle contractions that cause slow repetitive movements or abnormal postures. The movements may interfere with daily activities, and some forms of dystonia may be painful. Some individuals with dystonia may have a tremor or other neurologic features. Dystonia is not a psychological or psychiatric disorder. There are several different forms of dystonia that may affect only one muscle, groups of muscles, or muscles throughout the body. Some forms of dystonia are genetic but the cause for the majority of cases is not known. Dystonia is the third most common movement disorder after essential tremor and Parkinson’s disease. Dystonia affects men, women, and children of all ages and backgrounds. WHAT CAUSES DYSTONIA? The cause of dystonia is not known. Researchers believe that dystonia results from an abnormality in or damage to the basal ganglia or other brain regions that control movement. There may be abnormalities in the brain’s ability to process a group of chemicals called neurotransmitters that help cells in the brain communicate with each other. There may also be abnormalities in the way the brain processes information and generates commands to move. In most cases, no abnormalities are visible using magnetic resonance imaging or other diagnostic imaging. WHAT ARE THE SYMPTOMS OF DYSTONIA? Dystonia can affect many different parts of the body, and the symptoms are different depending upon the form of dystonia. Early symptoms may include a foot cramp or a tendency for one foot to turn or drag—either sporadically or after running or walking some distance—or a worsening in handwriting after writing several lines. In other instances, the neck may turn or pull involuntarily, especially when the person is tired or under stress. Sometimes both eyes might blink rapidly and uncontrollably; other times, spasms will cause the eyes to close. Symptoms may also include tremor or difficulties speaking. In some cases, dystonia can affect only one specific action, while allowing others to occur unimpeded. For example, a musician may have dystonia when using her hand to play an instrument, but not when using the same hand to type. The initial symptoms can be very mild and may be noticeable only after prolonged exertion, stress, or fatigue. Over a period of time, the symptoms may become more noticeable or widespread; sometimes, however, there is little or no progression. Dystonia typically is not associated with problems thinking or understanding, but depression and anxiety may be present. WHAT TREATMENTS ARE AVAILABLE? Currently, there are no medications to prevent dystonia or slow its progression. There are, however, several treatment options that can ease some of the symptoms of dystonia, so physicians can select a therapeutic approach based on each individual’s symptoms. In most cases, the type of doctor who is typically trained to diagnose and treat dystonia is a movement disorder neurologist. Otolaryngologists, neuro-ophthalmologists, physiatrists and ophthalmologists may also treat focal dystonias that fall under their practice and specialties. The most commonly used treatments may include one or more of the following: • Botulinum toxin. Botulinum injections often are the most effective treatment for the focal dystonias. Injections of small amounts of this chemical into affected muscles prevents muscle contractions and can provide temporary improvement in the abnormal postures and movements that characterize dystonia. First used to treat blepharospasm, such injections are now widely used for treating other focal dystonias. The toxin decreases muscle spasms by blocking release of the neurotransmitter acetylcholine, which normally causes muscles to contract. The effect typically is seen a few days after the injections and can last for several months before the injections must be repeated. The details of the treatment will vary among individuals. • Medications. Several classes of drugs that affect different neurotransmitters may be effective for various forms of dystonia. These medications are used “off-label”, meaning they are approved by the U.S. Food and Drug Administration to treat different disorders or conditions but have not been specifically approved to treat dystonia. The response to drugs varies among individuals and even in the same person over time. • Deep brain stimulation (DBS) may be recommended for some individuals with dystonia, especially when medications do not sufficiently alleviate symptoms or the side effects are too severe. DBS involves surgically implanting small electrodes that are connected to a pulse generator into specific brain regions that control movement. Controlled amounts of electricity are sent into the exact region of the brain that generates the dystonic symptoms and interfere with and block the electrical signals that cause the symptoms. DBS should be conducted by an interdisciplinary team involving neurologists, neurosurgeons, psychiatrists, and neuropsychologists, as there is intensive follow-up and adjustments to optimize an individual’s DBS settings. • Other surgeries aim to interrupt the pathways responsible for the abnormal movements at various levels of the nervous system. Some operations purposely damage small regions of the thalamus (thalamotomy), globus pallidus (pallidotomy), or other deep centers in the brain. Other surgeries include cutting nerves leading to the nerve roots deep in the neck close to the spinal cord (anterior cervical rhizotomy) or removing the nerves at the point they enter the contracting muscles (selective peripheral denervation). Some patients report significant symptom reduction after surgery. • Physical and other therapies may be helpful for individuals with dystonia and may be an adjunct to other therapeutic approaches. Speech therapy and/or voice therapy can be quite helpful for some affected by spasmodic dysphonia. Physical therapy, the use of splints, stress management, and biofeedback also may help individuals with certain forms of dystonia. IS THERE A CURE FOR DYSTONIA? There is currently no cure for Dystonia, however research is being performed around the world to find better and less invasive treatments with the ultimate goal of finding a cure. The Kurt B. Seydow Dystonia Foundation is committed to funding awareness campaigns, education and clinical research. For further information about Dystonia and The KBSDF, please visit our website at www.kbsdystonia.org