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Spasmodic Torticollis

GENERAL INFORMATION:

What is spasmodic torticollis? Spasmodic (spaz-MOD-ik) torticollis (tor-ti-KOL-is), also called cervical dystonia, is a condition where the neck muscles contract (tighten) abnormally. This contracting causes the neck to twist and the head to tilt to one side, forwards, or backwards. Spasmodic torticollis may occur on and off or continuously. It often gets worse with stress.

What causes spasmodic torticollis? No one knows exactly what causes spasmodic torticollis. This condition may happen after a trauma or an injury. It may also be caused by a disorder affecting a system in the body. The body system may include the muscles and bones, spinal cord, brain, eyes, or the vestibular (balance) system. The risk of having torticollis may be higher if it is present in a close family member.

What are the signs and symptoms of spasmodic torticollis? You may have any of the following:

• Abnormal posture of the head with twisting of the neck.
  
  
• Large or unequal neck muscles.
  
  
• Muscle spasms, jerks, or tremor.
  
  
• Neck or shoulder pain.

The signs and symptoms of spasmodic torticollis may go away during sleep. These may return after waking up. Sensory tricks or special positions that ease the symptoms may be present. These may include touching or holding the chin, leaning the head against the wall, bending forward, or lying down.

How is spasmodic torticollis diagnosed? Your caregiver will need to take a detailed health history from you. A physical exam will also be done. Your caregiver will carefully check the parts of your body to look for abnormal changes or movements. He may do things to check how your brain and nerves are doing. These may also include checking how well you feel and how strong your muscles are. Certain tests use a special dye to help organs and structures show up better. Tell caregivers if you are allergic to iodine or shellfish (lobster, crab, or shrimp), as you may also be allergic to this dye. Any of the following tests may be done:

• Computerized tomography scan: This is also called a CT scan. An x-ray machine uses a computer to take pictures of your neck. It may be used to look for problems in your bones, muscles, brain, and blood vessels.
  
  
• Magnetic resonance imaging: This test is called MRI. During the MRI, pictures are taken of your neck. An MRI may be used to look for problems in your muscles or bones which may be causing the condition. You will need to lie still during his MRI. Never enter the MRI room with an oxygen tank, wrist watch, or any other metal objects. This can cause serious injury.
  
  
• C-spine x-rays: You may need cervical spine (c-spine) x-rays to check for broken bones or other problems in your neck. Several pictures may be taken of the bones in your neck. These neck bones are called vertebrae.
  
  
• Electromyography (EMG): Electromyography is a test that measures the electrical activity of your muscles. Your muscles are tested at rest and while you are using them. An EMG test may also check the nerves that control your muscles.

How is spasmodic torticollis treated? You may have any of the following:

• Medicines: Medicines that help decrease muscle spasm may be given. These include different medicines taken by mouth or given as shots. Botulinum toxin injections are often used for treating spasmodic torticollis.
  
  
• Surgery: Surgery may be needed if other treatments fail. The nerves that supply the affected muscles may be cut. Sometimes, the muscles of the neck may be cut or separated.

Where can I find support and more information? Having a spasmodic torticollis may be life-changing for you and your family. Accepting that you have this condition may be hard. You may want to join a support group, which is a group of people who also have spasmodic torticollis. Contact the following for more information:

• National Institute of Neurological Disorders and Stroke
  P.O. Box 5801
  Bethesda, MD 20824
  Phone: 1-800-352-9424
  Web Address: http://www.ninds.nih.gov
  

• National Spasmodic Torticollis Association
  NSTA
  9920 Talbert Avenue
  Fountain Valley, CA 92708
  Web Address: www.torticollis.org
  

• Worldwide Education and Awareness for Movement Disorders
  WEMOVE
  204 West 84th Street
  New York, , NY 10024
  Web Address: www.wemove.org
  

CARE AGREEMENT:

You have the right to help plan your care. To help with this plan, you must learn about your health condition and how it may be treated. You can then discuss treatment options with your caregivers. Work with them to decide what care may be used to treat you. You always have the right to refuse treatment.

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