Consumer Information

Spasmodic Torticollis

WHAT YOU SHOULD KNOW:

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. No one knows exactly what causes spasmodic torticollis. This condition may happen after an injury or a trauma. 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 is higher if it is present in a close family member.
Signs and symptoms of spasmodic torticollis may include muscle spasms, jerks, or tremors. You may also have pain in your neck or shoulder. Your neck may be larger than usual or the neck muscles may be unequal. A detailed health history and physical exam are needed to diagnose spasmodic torticollis. Tests, such as computerized tomography (CT) scan, magnetic resonance imaging (MRI), or x-rays may also be done. Treatment may include surgery and medicines that help decrease the muscle spasms. With treatment and care, symptoms of spasmodic torticollis may be relieved, and your quality of life improved.

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.

RISKS:

Treatment of spasmodic torticollis may cause unpleasant effects. Botulinum toxin treatment may cause hoarseness or voice changes, dizziness, weakness, and difficulty swallowing. Injection of medicines may cause bleeding or damage to organs. Botulinum toxin may need to be done many times and may have a decreased effect over time. Other medicines may cause dry mouth, constipation (dry, hard bowel movement), and blurred vision. You may have bleeding or get an infection with surgery. If untreated, severe spasmodic torticollis may cause further problems. Your muscles may shorten, become stiff, and be unable to move. Ask your caregiver if you are worried or have questions about your condition, care, or treatment.

WHILE YOU ARE HERE:

Informed consent: You have the right to understand your health condition in words that you know. You should be told what tests, treatments, or procedures may be done to treat your condition. Your doctor should also tell you about the risks and benefits of each treatment. You may be asked to sign a consent form that gives caregivers permission to do certain tests, treatments, or procedures. If you are unable to give your consent, someone who has permission can sign this form for you. A consent form is a legal piece of paper that tells exactly what will be done to you. Before giving your consent, make sure all your questions have been answered so that you understand what may happen.

Medicines: Your caregiver may give you the following kinds of medicines:

Muscle relaxers: This is medicine to help your muscles relax. When your muscles relax, you may move more easily and have less pain.
Pain medicine: Caregivers may give you medicine to take away or decrease your pain. Medicine may be given regularly, or may only be given if you ask caregivers for it. Tell caregivers if your pain does not decrease enough for you to feel better. Do not wait to ask for your pain medicine until the pain is very bad. The medicine may not work as well at controlling your pain if you wait too long to take it. Ask your caregiver for help getting out of bed if you feel tired or dizzy.

Tests: 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 your 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.

Treatment options:

Support: Supportive treatment may be given when other problems occur.
- Feeding tube: A feeding tube may be needed when you are unable to use your mouth to eat. This may happen when you develop swallowing problems after having a botulinum toxin injection.
- Cervical collar: A soft collar (brace) may be placed around your neck. This is done if you have too much neck muscle weakness and cannot hold your head properly. A collar may be put on to support your neck while the effect of the botulinum toxin lasts.
Surgery: You may need to have surgery if other treatments fail. Surgery may be done to cut the nerves that supply the affected muscles. Sometimes, the muscles of the neck may be cut or separated.

The above information is an educational aid only. It is not intended as medical advice for individual conditions or treatments. Talk to your doctor, nurse or pharmacist before following any medical regimen to see if it is safe and effective for you.

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