Were you diagnosed with neurofibromatosis as a child? Or did you recently learn you have it? Either way, you probably have questions about your symptoms — and how to manage them.
Three types of this genetic disorder affect your nervous system. The first usually starts during childhood, while the others don’t surface until adulthood. No matter what, managing neurofibromatosis is a lifelong journey.
Working with healthcare providers you trust can make things easier. At Cleveland Clinic, you’ll find experts who will be on your side. Our team offers complete care for neurofibromatosis, from diagnosis to ongoing treatment. We’re here to care for all of you — your body, mind, and emotions.
Neurofibromatosis can affect different parts of your body. A care team of providers from different specialties will provide highly personalized testing and treatment. Your MyChart account connects you and your care team to all your health information — including appointment notes, test results and medications. Meet our team.
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People travel from all over the country — and the world — for our nationally ranked neurological care. Our team has hundreds of skilled providers working together to pinpoint your diagnosis, plan your care and support you across every step.
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There are three kinds of neurofibromatosis. Each affects different parts of your body:
Neurofibromatosis and schwannomatosis show up differently for each person. That’s why it’s important to get a diagnosis and treatment from experienced healthcare providers. When you visit Cleveland Clinic, you’ll have an expert team to help you understand what to expect from tests and treatment.
When you come for your first appointment, your provider will take time to get to know you and understand your condition. They’ll ask a lot of questions so they can get a better idea of what’s happening, like:
Your provider will also do a physical exam to check for signs of neurofibromatosis, like tumors, skin spots or heart problems. You might also have a hearing test and eye exam.
If you have tumors you can see or feel, your provider take a small sample (biopsy) to check if they are cancer. You may also have blood tests to check your overall health and rule out other problems.
Our team may also order imaging tests like an MRI or CT scan to get a closer look at your brain and nervous system.
Because neurofibromatosis is passed down through families, your provider will likely suggest genetic testing as part of your care.
Our team-based approach to care means you have all the specialty providers you need working together (and with you) to plan and manage your treatment, like:
Depending on your needs, you may also see specialists in fields like pain management, fertility and mental health.
We offer treatment for neurofibromatosis at the following location in Northeast Ohio.
No matter what type of neurofibromatosis you have, it’s something you’ll manage throughout your life. Our team cares for the many symptoms that come with NF, including:
Treatment can look different for each person, so your care team will help create a plan that’s right for you. This might include medicine, surgery, or regular checkups to keep an eye on things.
You’ll have regular testing and visits with your care team. These visits are a great time to share an update on your symptoms and any other concerns. We’ll use these checkups to track tumor growth, vision and hearing problems, and more. These visits also allow us to treat any complications quickly.
Sometimes, your provider may choose to keep an eye on your symptoms rather than start treatment right away. This may be the case if they’re stable and aren’t interfering with your daily life.
Your providers can recommend oral or IV (through a vein) 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 everyday living.
Tumors from neurofibromatosis can cause problems with hearing, balance, movement, and more. Your care team may suggest surgery to remove all or part of a tumor, depending on its size, where it is and your symptoms. Some types of neurofibromatosis can also lead to cataracts, cloudy areas on your eyes’ lenses that can cause vision loss. We may recommend surgery for those too.
We also can shrink tumors using radiation or chemotherapy. Computer-guided Gamma Knife® surgery treats tumors with highly focused radiation in a single dose.
Living with a long-term condition like neurofibromatosis can be stressful — and you may decide you need extra help. Our caring providers can connect you and your family with counselors, support groups, and other resources.
Taking care of yourself when you have neurofibromatosis means making good choices every day. Having compassionate and skilled healthcare providers by your side can make this easier. Our team will work with you to create a care plan that fits your needs and goals. We want to support you in living your life to the fullest.
Getting an appointment with one of our neurofibromatosis experts is easy. We’re here to help you get the care you need.
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