Dystonia

Dystonia is a group of conditions that cause your muscles to tense up or squeeze when you don’t want them to. This can cause parts of your body to twist, tremor or contract unnaturally. And this can be uncomfortable or even painful.

Types of dystonia

There are several types of dystonia that can affect different parts of your body:

• Focal dystonia happens in only one part of your body, like your neck, foot or hand.
• Segmental dystonia affects two or more body parts that are next to each other (adjacent).
• Multifocal dystonia affects two or more body parts that aren’t next to each other.
• Hemidystonia affects one side of your body (left or right).
• Generalized dystonia affects your trunk (main part of your body that is not your arms, legs or head) and other body parts.

We still don’t know exactly how or why dystonia starts. But we think some types come from changes in your genes (genetic mutations) or conditions or injuries that can mess up how your brain works. The causes of dystonia are organized into three categories:

• Primary dystonia: If we say you have primary dystonia, it means it’s your main condition. And it usually starts for an unknown (idiopathic) reason — like something genetic (but not always).
• Secondary dystonia: This type happens when another condition or problem causes the dystonia, like a brain tumor, stroke or exposure to toxins.
• Dystonia plus: This means dystonia is the main symptom of a neurological condition, but not the only symptom.

Sometimes, dystonia can be a short-term problem. Other times, it can be chronic (lifelong). Most of the time, it’s treatable. It depends on what triggers it and where it’s happening in your body.

Diagnosing Dystonia at Cleveland Clinic

Many other conditions can have the same symptoms as dystonia. So, a diagnosis needs to rule out these other problems, too — and this can be challenging. To do this, your care team will take a multistep approach to confirm your diagnosis. Then, they’ll work together to craft a highly personalized treatment plan.

What to expect at your first appointment

We’ll go over your health history and ask when you first noticed your dystonia symptoms. We’ll also want to know if your symptoms have gotten worse and how they’re affecting your life.

We’ll ask about your family’s health history, too, because some types of dystonia run in families (inherited). Feel free to ask questions and share any concerns — we’re here for you.

Next, you’ll have a physical exam to check your overall health and a neurological exam so we can see how your brain and nervous system are working. And we’ll likely have you do more tests so we can dive deeper into why you’re having dystonia.

Blood tests

Doing bloodwork can help us rule out conditions that cause symptoms like dystonia or test for specific genes that can cause dystonia.

Brain imaging

Imaging tests let us check for structural abnormalities in your brain that may be contributing to your symptoms. These tests can include:

• CT scan (computed tomography scan).
• MRI (magnetic resonance imaging).
• PET scan (positron emission tomography scan).

Electromyogram (EMG)

An EMG checks to see how your nerves and muscles are working. Your provider will place small discs on your skin and insert a tiny needle into one or more of your muscles. The discs and needles send signals to a computer, which records your nerve activity.

Genetic testing

If we think you may have an inherited type of dystonia, we may recommend genetic testing. Our genetic counselors will go over the pros and cons of testing with you so you can make an informed decision. When we receive your results, we explain how they affect you, your family and your treatment options.

Meet Our Dystonia Team

If you come to Cleveland Clinic for dystonia care, you’ll get a team of expert healthcare providers from different specialties who focus on treating movement disorders like dystonia using the latest research and newest therapies. In most cases, a neurologist will lead your personalized care team, which could also include:

• Neurosurgeons.
• Radiologists.
• Psychiatrists.
• Psychologists.
• Geneticists.
• Genetic counselors.
• Physical therapists.
• Occupational therapists.
• Speech therapists.
• Nurse practitioners.
• Physician assistants.

Creating a dystonia treatment plan can be like building a custom puzzle — we need to look at all sorts of pieces from your health history, symptoms, test results and lifestyle. Considering all of this helps us create a personalized care plan that works for you and treats your specific symptoms.

Medications

Some medications treat dystonia symptoms by acting on certain chemicals in your brain. Your providers will carefully decide which medications may work best for you. They may also combine medications with other therapies to make the treatment as effective as possible.

Botulinum toxin 

Botulinum toxin injections (Botox^®, Xenomin^®, Dysport^® and Myobloc^®) are a highly effective treatment for focal dystonia and even some segmental dystonia symptoms. These injections (shots) help relax affected muscles and relieve spasms by blocking nerve signals for weeks, or even months.

Physical, occupational or speech therapy

Physical, occupational or speech therapy can help you better understand how your body moves and even get more control over your affected muscles. Therapists who understand dystonia will work with you to create a custom plan that can include exercises, relaxation and stress management techniques.

Neurosurgery

Brain surgery may be an option in severe cases if your symptoms don’t get better with other treatments. Our world-leading neurosurgeons treat all forms of severe dystonia, including the most complex and delicate surgeries. If we feel surgery is needed, we’ll explain your options and walk you through what to expect before, during and after surgery.

Deep brain stimulation (DBS)

DBS involves placing small electrodes (leads) in your brain. Your providers connect the leads to a battery-powered stimulator (pulse generator) implanted under the skin in your chest. The pulse generator sends mild electrical currents to the leads, which act like a “pacemaker” for your brain. The leads disrupt faulty nerve signals in the parts of your brain that control movement.

Our expert neurosurgeons can do DBS surgery while you’re awake so you can respond to commands. We can also do DBS while you’re asleep under general anesthesia. Our neurosurgeons attach the brain stimulators and wires, then use an MRI to map the lead locations while you’re asleep. This lets us know exactly where the leads are without asking you to follow commands.

Mental health care

When dystonia affects certain areas of your brain, it can also affect your mental health. You might feel depressed, have anxiety or mood changes. Or you could also have sensory issues or a sleep disorder. If you experience any of these things, we’ll connect you with specialists who can treat these conditions.

Taking the Next Step

Dystonia may be part of your life, but it doesn’t have to keep you down and sitting on the sidelines. When you get the right personalized treatment, you can start feeling better — physically and mentally. We’re here to help make that happen. With an expert healthcare team on your side, you can spend less time thinking about your dystonia and more time enjoying life.