Neurofibromatosis

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Were you diagnosed with neurofibromatosis as a child? Or did you just learn you have it? Either way, you probably have questions about how to manage it.

There are three types of this genetic disorder that affect your nervous system. The first usually starts during childhood. The others, not until adulthood. No matter what, managing neurofibromatosis is a lifelong journey.

It can be easier when you work closely with healthcare providers you trust. You’ll find the experts you want on your side at Cleveland Clinic. Our team helps you manage your symptoms and supports you every step of the way. We’re here to treat the whole you — not just your diagnosis.

Why Choose Cleveland Clinic for Neurofibromatosis Care?

Caring approach:

Managing a chronic condition like neurofibromatosis can be a lot to handle some days. You may feel stressed and unsettled — and you may realize you need extra support. Cleveland Clinic’s caring providers can connect you and your family with support groups, counselors and more. Meet our team.

Skilled collaborative providers:

While neurofibromatosis is a nervous system condition, it can affect different parts of your body. That’s why Cleveland Clinic builds unique care teams for every patient. Yours will have providers from the specialties you need — working together to give you highly personalized care with the best possible results.

Patient-centered care:

When you come to Cleveland Clinic, you can rest easy knowing you always stay at the center of your care. We pride ourselves on making sure each person gets the most individualized care for their needs. Our team listens and pays close attention to your symptoms and test results when building your treatment plan.

Innovation and research:

Cleveland Clinic takes part in many research studies to find the best ways to treat inherited nervous system and brain conditions like neurofibromatosis. Our team is also involved in clinical trials that test treatment options and preventive measures for many diagnoses. Ask your care team if you qualify for any current studies.

Trusted experts:

Our neurological care is nationally ranked. And people travel from all over the country — and even the globe — to get neurological treatment at Cleveland Clinic. Our team has hundreds of skilled providers working together to pinpoint your diagnosis, plan your personalized treatment and support you throughout your entire journey.

National recognition:

Cleveland Clinic is a trusted healthcare leader. We're recognized in the U.S. and throughout the world for our expertise and care.

Understanding the Types of Neurofibromatosis

There are three kinds of neurofibromatosis. Each affects different parts of your body:

Neurofibromatosis Type 1 (NF1):This is the most common type. It’s usually diagnosed in early childhood and can affect you throughout your life. Symptoms often cause noncancerous (benign) tumors underneath your skin (neurofibromas) and brown café-au-lait spots on top of it. It can also affect your vision and other parts of your body.
NF-2 related Schwannomatosis (NF2): This type, previously known as neurofibromatosis type 2, is most often diagnosed in adolescence or early adulthood. NF2 affects nerves linked to hearing and balance (auditory and vestibular nerves). Benign nerve tumors (acoustic neuromas or vestibular schwannomas) are common in this rarer type of neurofibromatosis.
Schwannomatosis: This is the rarest kind of neurofibromatosis. Benign schwannomas grow on your body’s nervous system. They can cause pain and affect movement, balance and more.

These conditions can also cause problems with your heart, veins, bones and even your ability to learn.

Diagnosing Neurofibromatosis at Cleveland Clinic

Neurofibromatosis affects each person differently. So that’s why it’s important to confirm a diagnosis with healthcare providers familiar with treating this genetic condition. When you come to Cleveland Clinic, you’ll meet with an experienced provider who’ll go over what to expect from testing and treatment.

What to expect at your first visit

Meeting new healthcare providers can be stressful. So can having an ongoing (chronic) condition like neurofibromatosis. So, it’s not unusual to be a little unsettled at your first appointment. That’s why your provider will take time to get to know you. They’ll ask a lot of questions so they can get a better idea of what’s happening, like:

If you already know you have neurofibromatosis, when were you diagnosed?
What symptoms do you have?
When did you first notice these symptoms?
Have these symptoms been getting worse?
How are your symptoms affecting your life?
Have you been diagnosed with any other health conditions?
Does anyone else in the family have neurofibromatosis?

Your provider will also give you a physical exam to look for signs of neurofibromatosis — like tumors, spots on your skin or problems with your vision, hearing or heart. This may include a hearing test and eye exam.

If you have tumors they can see or feel, your provider may do a biopsy to make sure they’re benign neurofibromas. You may have blood tests to check your overall health and rule out other conditions. You may also have imaging tests like an MRI or CT scan so your provider can look closely at your brain and nervous system.

Because neurofibromatosis is a genetic (inherited) condition, your provider will usually recommend you have genetic testing as part of your evaluation.

Meet Our Neurofibromatosis Team

Our team-based approach to care means you’ll have all the specialty providers you need working together to plan your ongoing treatment, like:

Providers Who Treat Neurofibromatosis

Locations

We offer treatment for neurofibromatosis at the following location in Northeast Ohio.

Treating Neurofibromatosis at Cleveland Clinic

No matter what type of neurofibromatosis you have, you’ll need to manage it for life. Your care team will go over the treatments they feel may work best for you.

Regular checkups and tests

You’ll have regular testing and visits with our care team. These visits are a great time to talk about any troublesome symptoms. We also keep an eye on how or if your condition is progressing. We can track tumor growth, vision and hearing problems and more. These checkups also let us quickly catch and treat any complications.

Your providers can recommend medications to manage pain or physical therapy to help with movement problems. They may also talk with you about hearing aids, glasses and other tools to help with daily life.

Surgery

If you have tumors from neurofibromatosis, they can cause problems with your hearing, balance, movement and more. Your care team may recommend surgery to remove all or part of the tumor depending on its size, location and your symptoms. Some kinds of neurofibromatosis can trigger cataracts that cause vision loss. We may also recommend surgery for those.

Radiation therapy and chemotherapy

We also can shrink tumors using radiation or chemotherapy. One possibility, computer-guided Gamma Knife^® surgery treats tumors with highly focused radiation in a single dose.

Taking the Next Step

When you have a chronic condition like neurofibromatosis, each day involves taking care of yourself in the best way possible. Doing this can be easier when you have the support of compassionate, skilled healthcare providers. Our team is here to help you along the best path with a care plan that meets your needs and goals. We want to help you keep living your life to the fullest.