What specialist doctors should I see with Neurofibromatosis Type II?

Neurofibromatosis Type II (NF2) is a complex disorder that can affect many parts of the body and have different health impacts throughout a person’s life. Because of the complexity of NF2, patients benefit most from working with a medical team who has expertise in the condition. This team often includes a medical geneticist and/or genetic counselor to help with a diagnosis of NF2, discussion of genetic testing options and results, review of how NF2 might affect other family members or future children and to provide an overview of the different medical providers that might be involved with the patient over time. The tumors that form in patients with NF2 are in the central nervous system, so these patients should also have a specialist in neurology as part of their team. Surgery is a part of life for those with NF2, and often times more than once. Therefore surgeons specially trained in neurology or ear, nose, and throat must be involved due to the high risk of complications. Therapists (physical and occupational) along with audiologists and ophthalmologists will also be involved with the patient to help with rehabilitation, balance issues and to monitor vision and hearing.

Other Questions About Neurofibromatosis, type II

• Why do mutations in the NF2 gene cause Neurofibromatosis Type II?
• Who else in my family should I test for NF2?
• Who else in my family should have testing for Neurofibromatosis Type II?
• Where do I find other people with NF2?
• What specialist doctors should I see with Neurofibromatosis Type II?