Cervical dystonia, also called spasmodic torticollis, is a painful condition in which your neck muscles contract involuntarily, causing your head to twist or turn to one side. Cervical dystonia can also cause your head to uncontrollably tilt forward or backward.
A rare disorder that can occur at any age, cervical dystonia most often occurs in middle-aged people, women more than men. Symptoms generally begin gradually and then reach a point where they don't get substantially worse.
There is no cure for cervical dystonia. The disorder sometimes resolves without treatment, but sustained remissions are uncommon. Injecting botulinum toxin into the affected muscles often reduces the signs and symptoms of cervical dystonia. Surgery may be appropriate in a few cases.
The muscle contractions involved in cervical dystonia can cause your head to twist in a variety of directions, including:
- Chin toward shoulder
- Ear toward shoulder
- Chin straight up
- Chin straight down
The most common type of twisting associated with cervical dystonia is when your chin is pulled toward your shoulder. Some people experience a combination of abnormal head postures. A jerking motion of the head also may occur.
Many people who have cervical dystonia also experience neck pain that can radiate into the shoulders. The disorder can also cause headaches. In some people, the pain from cervical dystonia can be exhausting and disabling.
In most people with cervical dystonia, the cause is unknown. Some people who have cervical dystonia have a family history of the disorder. Researchers have found gene mutations associated with cervical dystonia. Cervical dystonia is also sometimes linked to head, neck or shoulder injuries.
Risk factors for cervical dystonia include:
- Age. While the disorder can occur in people of any age, it most commonly begins after age 30.
- Your sex. Women are more likely to develop cervical dystonia than are men.
- Family history. If a close family member has cervical dystonia or some other type of dystonia, you are at higher risk of developing the disorder.
In some cases, the involuntary muscle contractions associated with cervical dystonia can spread to nearby areas of your body. The most common locations include the face, jaw, arms and trunk.
People who have cervical dystonia may also develop bone spurs that may reduce the amount of space in the spinal canal. This can cause tingling, numbness and weakness in the arms, hands, legs or feet.
While a physical examination alone can often confirm a diagnosis of cervical dystonia, your doctor might suggest blood tests or magnetic resonance imaging (MRI) to rule out any underlying conditions causing your signs and symptoms.
There is no cure for cervical dystonia. In some people, signs and symptoms may disappear without treatment, but recurrence is common. Treatment focuses on relieving the signs and symptoms.
Botulinum toxin, a paralyzing agent often used to smooth facial wrinkles, can be injected directly into the neck muscles affected by cervical dystonia. Examples of botulinum toxin drugs include Botox, Dysport, Xeomin and Myobloc.
Most people with cervical dystonia see an improvement with these injections, which usually must be repeated every three to four months.
To improve results or to help reduce the dosage and frequency of botulinum toxin injections, your doctor might also suggest oral medications that have a muscle-relaxing effect.
Sensory tricks, such as touching the opposite side of your face or the back of your head, may cause spasms to stop temporarily. Different sensory tricks work for different people, but they often lose effectiveness as the disease progresses.
Heat packs and massage can help relax your neck and shoulder muscles. Exercises that improve neck strength and flexibility also may be helpful.
The signs and symptoms of cervical dystonia tend to worsen when you're stressed, so learning stress management techniques also is important.
Surgery and other procedures
If less invasive treatments don't help, your doctor might suggest surgery. Procedures may include:
- Deep brain stimulation. In this procedure, a thin wire is guided into the brain through a small hole cut into the skull. The tip of the wire is placed in the portion of the brain that controls movement. Electrical pulses are sent through the wire to interrupt the nerve signals making your head twist.
- Cutting the nerves. Another option is to surgically sever the nerves carrying the contraction signals to the affected muscles.
Coping and support
Severe cases of cervical dystonia may make you feel uncomfortable in social situations or even limit your abilities to accomplish everyday tasks such as driving. Many people with cervical dystonia feel isolated and depressed.
Remember that you're not alone. A number of organizations and support groups are dedicated to providing information and support for you and your family — whether you have the disorder or you have a friend or family member who does.
Your doctor may be able to suggest support groups available in your area, or there are a number of good sites on the internet with information about local support groups.
Preparing for an appointment
While you might first discuss your symptoms with your family doctor, he or she may refer you to a neurologist — a doctor who specializes in disorders of the brain and nervous system — for further evaluation.
What you can do
Because appointments can be brief, plan ahead and write a list that includes:
- Information about the medical problems of your parents or siblings
- All the medications and dietary supplements you take
- Questions you want to ask the doctor
What to expect from your doctor
Your doctor may ask some of the following questions:
- When did your symptoms start?
- Have your symptoms worsened over time?
- Does anything seem to help relieve your symptoms?
- What medications do you take?
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