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What to Expect
To request an appointment with our clinic, please call 617-643-6997. Our unit coordinator will ask you for general and medical history information and try to schedule an appointment with the physician who best fits your needs.
Before your appointment, you will receive a medical history form to fill out and return by mail. This form collects further details about your health history and current medications.
You and your physician review this information at your first visit. You also undergo a physical examination in which the physician may ask you to perform tasks such as toe tapping, writing and walking. Our physicians are quite experienced in identifying dystonia, which can be notoriously difficult to diagnose.
When the evaluation is complete, you and the physician discuss recommendations and agree on a suitable treatment regimen based on your current symptoms. We customize each patient's treatment plan—and make adjustments over time as necessary—to optimize symptom management.
The Dystonia Clinic takes a team approach to patient care. Our four neurologists regularly collaborate in diagnosing, evaluating and treating patients with dystonia. If we suspect a patient has a different neurologic disease, we can refer him or her to a subspecialist elsewhere within the Department of Neurology for further assessment.
In order to address all aspects of the patient's well-being, we may call on colleagues throughout Mass General, including physical therapists, speech therapists, social workers and psychologists. We strive to develop a long-term treatment solution that allows the patient to control this disorder and lead an independent, active life. Many of our patients are able to continue working until a normal retirement age.
Genetic Counseling & Testing
Genetics can play a strong role in children who develop dystonia and may also be a significant risk factor for adults. When appropriate, we refer patients for genetic counseling and testing to determine if a genetic mutation that causes dystonia is present. Tests take place primarily through the Mass General Neurogenetics DNA Diagnostic Laboratory. For patients who have symptoms, genetic testing helps to ensure an accurate diagnosis.
For individuals at risk for dystonia, predictive genetic testing may help with making informed decisions about issues such as family planning. (These records are kept confidential in accordance with HIPAA law and the privacy policies of Mass General.) The testing process always includes pretest genetic counseling. In most cases, test results are delivered in person, and follow-up care is available as needed.
Our team has highly specialized experience in caring for patients with cervical dystonia, generalized dystonia, writer's cramp and other forms of dystonia. Whereas most hospitals have one neurologist seeing all patients with movement disorders, we have four neurologists with expertise in dystonia.
Our staff also includes Lisa Paul, RN, NP, a board-certified family nurse practitioner, and Trisha Multhaupt-Buell, MS, a genetic counselor and research coordinator.
A Full Range of Therapies for Dystonia
Dystonia can affect any part of the body, such as limbs, hands, the torso, eyelids, face, neck and/or vocal cords. This chronic condition has no cure, so we focus on symptom management to improve the patient's quality of life and ability to function.
Because each patient has a unique set of symptoms, we develop individualized treatment plans. Patients may respond to oral medications, botulinum toxin injections, braces, physical therapy or a combination of these treatments. We preach patience because finding the most effective treatment regimen for the patient can sometimes take months.
If oral and/or injected medications don't achieve the desired results, the patient may benefit from deep brain stimulation (DBS). This surgical procedure, which involves implanting an electrode (i.e. stimulator) in the brain to interrupt neural activity, can alleviate symptoms in carefully selected patients with severe dystonia.
Mass General was one of the first hospitals to perform DBS and has used the procedure extensively to treat movement disorders such as dystonia and Parkinson's disease.
Committed to Treatment & ResearchThe Dystonia Clinic is one of four entities comprising the Mass General Movement Disorders Unit. Although our clinic's primary mission is to treat patients, we also lead robust research efforts into dystonia and other movement disorders.
In 1997 Mass General researchers identified and cloned the gene responsible for early-onset dystonia, a discovery that has led to a better understanding of the disease and possible preventative treatments. Today, Dr. Sharma is aiming to find other genes that cause dystonia and using functional MRIs to explore how the brain works in people with this condition.
Our patients may be eligible to take part in clinical research and/or clinical trials exploring new and promising treatments for dystonia. Please review the Department of Neurology's clinical trials and studies for more information.
X-linked Dystonia Parkinsonism
To learn more about X-linked Dystonia Parkinsonism (XDP), a rare form of dystonia affecting men of Filipino descent, please visit the Collaborative Center for XDP site.
Dystonia is a movement disorder that causes involuntary muscle contraction and forces certain body parts, such as limbs, hands, face and/or neck, into abnormal positions.
Parkinson's disease (PD or, simply, Parkinson's) is a slowly progressing, degenerative disease that is associated with symptoms such as tremor or trembling of the arms, jaw, legs and face, stiffness or rigidity of the limbs and trunk, bradykinesia (slowness of movement), postural instability or impaired balance and coordination.
Spasmodic dysphonia, also called laryngeal dystonia, is a voice disorder. It is characterized by involuntary spasms or movements in the muscles of the larynx, which causes the voice to break, and have a tight, strained, or strangled sound.
Torticollis, also known as wryneck, is a twisting of the neck that causes the head to rotate and tilt at an odd angle.
The "Parkinson's Disease and the Family" book is a guide for people with Parkinson's disease, and their friends and family. It provides medical and practical information in an approachable, easy-to-read manner.
Movement disorder and dystonia related organizations for patients & families, including deep brain stimulation, belpharospasm, Spasmodic Dysphonia and Torticollis, Dopa-Responsive Dystonia, Bachmann-Strauss Dystonia and Parkinson's disease.
Neurology residents, program graduates, faculty members, and the education director talk about training at Mass General Hospital and Brigham and Women’s Hospital.
Charles River Plaza, Building 165
Neurology, Dystonia ClinicMailcode: CRP 165-8Massachusetts General Hospital 55 Fruit Street Boston, MA 02114
Clinic HoursThe Dystonia Clinic is held on Thursdays.Deep Brain Stimulation
Deep Brain Stimulator adjustments are done on Wednesdays at the Wang Ambulatory Care Center.Lisa Paul, RN, NPClinical Coordinator: 617-724-9234
Wang Ambulatory Care Center, 8th floor15 Park StreetBoston, MA 02144
Research Coordinator & Genetic Counselor: Trisha Multhaupt, MS
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