Duke neurofibromatosis experts provide comprehensive medical and surgical care to children, adolescents, and adults with all forms of neurofibromatosis including NF1, also called Von Recklinghausen’s disease, a rare form called NF2, and schwannomatosis. We help control your pain and lead a normal life.
Expert care for neurofibromatosis
Neurofibromatosis is a genetic disorder that causes tumors to grow in nerve tissue in the skin, brain, and spinal cord. While the tumors are typically not cancerous, they can cause several complications including hearing and/or vision loss, learning disabilities, and severe pain. Our team includes a range of specialists who work together to treat the symptoms and complications of neurofibromatosis, including disfigurement.
Most cases of NF1 - the most common form of neurofibromatosis - appear in children before the age of 10. Because your child’s symptoms may evolve over time, we develop a close relationship and monitor your child, so we detect changes and quickly respond to any complications that arise. While there is no cure for neurofibromatosis, our treatments control pain and help you or your child lead a normal life.
Choose Duke for your neurofibromatosis care because we offer:
- National reputation. Our neurology and neurosurgery programs are ranked among the nation’s best by U.S. News & World Report. Our faculty and staff set the standard for excellence, and provide family-centered care.
- A team of specialists. Your care team includes specialists in neurology, neuro-oncology, medical genetics, neurosurgery, ophthalmology, neuro-otology, plastic surgery, cardiology, learning disabilities and physical therapy. We work together to address the complications associated with neurofibromatosis.
- Pediatric and adult expertise. Our neurosurgery team works in seamless collaboration with our pediatric specialists to make sure you or your child receive age-appropriate care. We understand the important differences in this disease at different ages. Neurofibromatosis is often detected in childhood, but some cases can be diagnosed in your 20s and 30s.
- Clinical trial access. You may have be eligible to participate in our clinical trials and research studies that give you access to experimental therapies before they become widely available.
Children with NF1 or NF2 may require ongoing monitoring to watch for changes in symptoms or the development of complications.
Removes tumors that cause complications including hearing and/or vision loss, learning disabilities, severe pain, or cosmetic disfigurement.
Delivers targeted radiation to shrink NF2 tumors that may be associated with hearing loss and nerve damage.
A surgically implanted device in the inner ear can dramatically improve hearing in NF2 patients who experience significant hearing loss. Learn more about cochlear implant surgery.
Although neurofibromatosis rarely becomes cancerous (only 3-5 percent of cases), we have the expertise to treat you if it does. We use a combination of surgery, chemotherapy and/or radiation therapy to shrink and destroy your tumor if cancer is detected.
In addition to a physical exam and family history evaluation, your doctor may order one of the following tests:
Looks for tiny bumps on the iris that may indicate neurofibromatosis.
Through a series of tests, checks balance and hearing functions in people with NF2.
Magnetic field and radio waves make a high-resolution picture of the brain. We often order an MRI in conjunction with hearing tests to identify NF2. An MRI can detect tumors in the brain or spine, and confirm a diagnosis of NF1.
Two-dimensional pictures of tissues and organs at slightly different angles create a 3-D image. Your doctor uses these pictures to look for tumors and other abnormalities.