Need neurofibromatosis care for a child?Diagnosed with neurofibromatosis as a child? Or schwannomatosis more recently? Either way, you probably have questions about how to manage your symptoms.
Several types of these genetic disorders can affect your nervous system. Neurofibromatosis usually starts during childhood, while schwannomatosis often doesn’t surface until adulthood and may include ongoing pain, or changes in hearing, balance or movement. Regardless, managing neurofibromatosis or schwannomatosis is a lifelong journey, and care often focuses on managing symptoms and protecting your quality of life.
Working with healthcare providers you trust can make things easier. At Cleveland Clinic, you’ll find experts who are on your side. Our team offers complete care, from diagnosis to ongoing treatment. We’re here to care for all of you — your body, mind and emotions.
Neurofibromatosis and schwannomatosis can affect different parts of your body and at various times in your life. Our care team understands that and has expertise across many different specialties. That means you get targeted, highly personalized testing and treatment. Your MyChart account connects you and your care team to all of your health information — including appointment notes, test results and medications. Meet our team.
Cleveland Clinic leads and takes part in many research studies to advance patient care by exploring new drugs, surgery techniques and other treatments. Through clinical trials, you may be able to help test new treatments before they’re widely available. Ask your care team if you qualify for any current studies.
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. Cleveland Clinic is designated as a Comprehensive NF1 Center and a Comprehensive Schwannomatosis Center by the NF Clinic Network. This reflects our expertise, broad patient population and focus on research and education.
Whether you need a new patient evaluation or a quick check-in with your provider, a virtual visit could be an option. Meeting with providers online from home can eliminate hassles like travel, parking and waiting to be seen.
Cleveland Clinic is a trusted healthcare leader. We’re recognized in the U.S. and throughout the world for our expertise and care.
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 an eye exam.
If you have tumors you can see or feel, your provider will take a small sample (biopsy) to check if it’s cancerous. You may also have blood tests to check your overall health and rule out other issues.
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 these are genetic conditions — neurofibromatosis and schwannomatosis are passed down through families — your provider will also 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, such as:
Depending on your needs, you may also see specialists in fields like pain management, fertility and mental health.
Our healthcare providers see patients at convenient locations throughout Northeast Ohio.
Neurofibromatosis and schwannomatosis are long-term conditions that require ongoing care. Treatment focuses on managing symptoms, monitoring tumors and addressing complications that affect your daily life. Symptoms and concerns we commonly help manage include:
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 check-ups 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 check-ups 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 symptoms are stable and aren’t interfering with your daily life.
Your providers can recommend oral or IV (intravenous, through a vein) medications to help 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.
If you have schwannomatosis, these visits are also an important time to talk about pain — what’s helping, what’s not, and whether treatment adjustments could improve comfort and function.
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 can also 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 or schwannomatosis can be physically and emotionally challenging — 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 or schwannomatosis 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 and schwannomatosis experts is easy. We’re here to help you get the care you need.
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