Neurofibromatosis

Neurofibromatosis Type 1, Neurofibromatosis Type 2 and Schwannomatosis

Neurofibromatosis type 1, neurofibromatosis type 2, and schwannomatosis are a group of diseases caused by genetic mutations. Each type of neurofibromatosis has different signs and symptoms, affects people at different ages, and requires different treatments. Our nationally recognized neurofibromatosis experts treat children and adults with all forms of neurofibromatosis. Our comprehensive, specialty care is personalized to an individual’s specific needs with the goal of preserving function, managing pain, and addressing any complications that may arise.

Three Types of Neurofibromatosis

  • Neurofibromatosis type 1 (NF1) is often diagnosed by birth or early childhood. The first signs may be light brown spots on the skin or freckles in the armpit. Later issues may include optic nerve tumors and peripheral nerve tumors. Children with NF1 may also experience migraines, learning disabilities, attention problems, and seizures.
  • Neurofibromatosis type 2 (NF2) is less common and more likely to be diagnosed in early adulthood. Tumors almost always form along the nerve that is responsible for hearing and balance, which can cause difficulty hearing and loss of balance. Additional tumors can form in the brain and along the spine, causing headaches, sensory problems, and muscle weakness.
  • Schwannomatosis is rare and is usually diagnosed in young adults. It is similar to NF2 in that tumors can form along nerves throughout the body, but it generally does not affect hearing or balance.

Children and adults with these types of neurofibromatosis require ongoing monitoring and treatments from multiple specialists. For your convenience, we coordinate your care to take place during the same visit, in the same place, whenever possible.

Care for Neurofibromatosis Type 1 (NF1)

We offer the highest level of comprehensive, specialty care and patient education from birth to adulthood. That is important, as NF1 can impact your child’s physical appearance, cause learning disabilities, and affect your child’s vision and bone growth. As your child becomes an adult, he or she may also be at increased risk for benign and malignant tumors.

  • We have been recognized as one of 50+ sites in the NF Clinic Network by the Children’s Tumor Foundation.
  • Our team of specialists includes experts in genetics, neurology, neurosurgery, plastic surgery, ophthalmology, oncology, and otolaryngology. Your child may also receive therapy from learning disabilities specialists and physical therapists.
  • Our rapid whole-body MRI can assess the entire body for tumors in a single scan.
  • We use advanced imaging to try to predict vision loss in patients with optic gliomas.
  • Duke Children's is consistently ranked among the top hospitals for pediatric neurology and neurosurgery by U.S. News and World Report.
  • We are one of only seven hospitals in the U.S. verified as a level I children's surgery center by the American College of Surgeons. This Level I designation recognizes our commitment to providing the safest and highest-quality surgical care to our young patients.

Care for Neurofibromatosis Type 2 (NF2) and Schwannomatosis

Patients with NF2 require ongoing monitoring to address hearing loss, balance concerns, facial nerve damage, vision problems, and pain caused by tumor growth.

  • Skull base tumors are treated by our ear, nose, and throat surgeons, neurosurgeons, and neuro-oncologists who specialize in treating vestibular schwannomas.  State-of-the-art modalities are available to maximize hearing preservation, including cochlear implant and auditory brainstem implants.
  • Pain is often a serious concern for people with peripheral schwannomas. We offer pain management from a pain specialist, and medications to treat severe nerve pain, when necessary.
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