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Cervical Dystonia/Spasmodic Torticollis

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Cervical Dystonia/Spasmodic Torticollis What is the Cause? What Support is Available? Scientists believe dystonia symptoms result What is Cervical Dystonia? The Dystonia Medical Research Foundation from improper signals in the nervous system Dystonia is a movement disorder (www.dystonia-foundation.org) can provide that cause muscles to contract involuntarily. characterized by uncontrollable muscle educational resources, self-help opportunities, Cervical Researchers and doctors do not yet fully contractions that cause involuntary, contact with others living with cervical dysto - understand the neurological mechanisms often repetitive, body movements nia, volunteer opportunities, and connection Dystonia that cause this abnormal muscle contraction . and/or postures. to the greater dystonia community. DYSTONIA OF THE NECK MUSCLES Cervical dystonia may be isolated (primary) Cervical dystonia is a specific form What is the DMRF? or acquired (secondary). In isolated dystonia that affects the head and neck. Cervical The Dystonia Medical Research Foundation there is no evidence of any identifiable cause dystonia produces excessive muscle (DMRF) is a 501(c)3 non-profit organization for the dystonic symptoms. Isolated cervical contractions in the neck. These muscle that has served the dystonia community since dystonia may be genetic and typically affects contractions cause involuntary move - 1976. The DMRF funds medical research adults. Widespread epidemiological studies ments and awkward positions of the toward a cure, promotes awareness and are needed, but estimates suggest that isolate d head, neck, and sometimes shoulders. education, and supports the well being of cervical dystonia affects no fewer than affected individuals and families. 40,000 people in the United States. Cervical Cervical dystonia may cause the: dystonia may occur in the context of early- • Neck to twist or tilt to the side The DMRF can put you in touch with others onset generalized dystonia, which is often • Head to tip forward or back with dystonia for networking and support. associated with a mutation in the DYT1 gene. • Shoulder to elevate toward the ear • Neck to shift away from the midline Acquired dystonias are caused by specific of the body To learn more about dystonia structural or metabolic causes and are usually and the DMRF, contact: associated with additional neurological Cervical dystonia is among the most Dystonia Medical Research Foundation symptoms. The most common causes of common forms of dystonia seen in One East Wacker Drive, Suite 1730 acquired cervical dystonia are physical movement disorder clinics. Cervical Chicago, Illinois 60601-1980 trauma (about 10% of reported cases) and dystonia is sometimes referred to as Phone: 312-755-0198 drug reaction (less than 10% of reported spasmodic torticollis . Toll free: 800-377-DYST (3978) cases). Drug-induced cervical dystonia is Email: [email protected] most commonly attributed to neuroleptic Web: www.dystonia-foundation.org medications. Acquired dystonia may occur Connect with the DMRF on Facebook, at various ages, depending on the causative Twitter, and YouTube. event or condition. Children with cerebral palsy may have secondary dystonia symptoms Special thanks to Aleksandar Videnovic, MD, MSc including cervical dystonia. for reviewing this publication. © Dystonia Medical Research Foundation 2017 Are There Different Forms or Varieties? What Treatments are Available? Individuals with cervical dystonia may be at How is This Going to Affect Yes. Cervical dystonia symptoms may be Botulinum neurotoxin injections are typically increased risk for depression and anxiety dis - My Daily Life? sustained (“tonic”), causing abnormal postures the first line treatment for cervical dystonia. orders, so addressing emotional and mental Living well with cervical dystonia is possi - of the head and neck, or jerky (“clonic”), causing The injections are given intramuscularly, often health may be an important part of the treat - ble. The early stages of onset, diagnosis, abrupt head movements. Many individuals with electromyography (EMG) or ultrasound ment strategy. Gentle physical therapy with a and seeking effective treatment are often have a combination of sustained and jerky guidance, and must be repeated every three to physical therapist who specializes in neurolog - the most challenging. The symptoms may movements. Jerky movements may resemble six months. ical disorders may preserve/improve range of vary from mild to severe, and symptoms a tremor, and sometimes dystonia may be motion and help reduce pain. For some indi - often fluctuate from day to day. Cervical confused with essential tremor. Although a medication with the word “toxin” viduals, specially constructed cervical braces dystonia often causes significant physical in the name may seem confusing, botulinum may be useful to improve position of the head pain and fatigue. Individuals may have to Cervical dystonia may cause the: neurotoxin injections have decades of research and/or serve as a substitute for a sensory trick learn new ways to accomplish daily tasks. • Neck to twist to the side (“torticollis”) and clinical experience demonstrating that (see below). • Head to tip forward (“anterocollis”) they are a safe and effective medical therapy. Individuals living with dystonia are • Head to tip back (“retrocollis”) Botulinum neurotoxin has been approved for Complementary therapies should be explored, strongly encouraged to: • Head to tilt toward the ear (“laterocollis”) use in the United States since 1989. Several and regular relaxation practices may improve • Seek out the best medical care. • Shoulder to elevate toward the ear brands of botulinum neurotoxin are commer - discomfort, pain, and general well being. • Educate yourself about dystonia and • Neck to shift away from the center of cially available. treatment options. the body How is This Likely to Change or • Develop a multi-layered support system A multitude of oral medications have demon - Progress Over Time? of support groups, online resources, Most people have a combination of the strated some benefit, but no single drug has Symptoms usually plateau and remain stable friends, family, and mental health movements listed above. Estimates suggest proven effective for a majority of patients.The within a few years of onset. The symptoms, professionals, if needed. that up to 75% of people with cervical dystonia categories of drugs reported to help relieve however, may continue to change or fluctuate • Investigate complementary therapies. experience pain in the neck and shoulder area. symptoms include: in severity over time. In approximately one-third • Get active within the dystonia community . Headaches are also frequently reported. • Anticholinergic medications such as of people with cervical dystonia, the symptom s Artane ® (trihexyphenidyl) and Cogentin ® spread to nearby body areas such as the face, How Do I Find the Best Doctor? It is not unusual for individuals with cervical (benztropine) jaw, shoulder, and/or arm. The type of subspecialist with the expertise dystonia to have hand tremors. • Dopaminergic drugs such as Sinemet ® to diagnose and treat dystonia is typically or Madopar ® (levodopa) and dopamine Cervical dystonia symptoms are often partially a neurologist with special training in agonists relieved by a “sensory trick” (also known as movement disorders. • Muscle relaxants such as baclofen geste antagoniste) such as gently placing a hand • Benzodiazepines such as clonazepam on the chin, other areas of the face, or back and Valium ® (diazepam) of the head. A person with isolated (primary) cervical dystonia is more likely to respond to Surgical procedures such as deep brain a sensory trick than someone with acquired stimulation or selective denervation may (secondary) cervical dystonia. be recommended in select cases..
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