Surgery for Neurofibromatosis

NYU Langone physicians may sometimes use surgery to manage neurofibromatosis. They may want to surgically remove a tumor for examination under a microscope and possible genetic testing, to help confirm a diagnosis of neurofibromatosis type 1 or neurofibromatosis type 2.

Removing tumors may also help to relieve pain, a common symptom in people with schwannomatosis. Tumor removal can also prevent injury to the brain or spinal cord, areas of the body where growths are common in neurofibromatosis type 1 and neurofibromatosis type 2.

If cancerous tumors develop with neurofibromatosis—for example, malignant plexiform neurofibromas, which can develop in the arms, legs, or trunk—they can also be surgically removed. For cancerous tumors, surgery may be combined with other treatments for cancer.

Surgery for cochlear implants or auditory brainstem implants in people with neurofibromatosis type 2 can help to restore hearing. In this type of neurofibromatosis, tumors called vestibular schwannomas, which develop along the eighth cranial nerve on both sides of the head, can cause hearing loss.

NYU Langone’s orthopedic surgeons can perform procedures to help restore the ability to walk in children with pseudarthrosis, or a false joint, in the shinbone. This complication, in which a child has bone fractures that do not heal, may affect children with neurofibromatosis type 1.

At NYU Langone, you have access to a wide range of surgical specialists with extensive experience in managing of all types of neurofibromatosis. Your care team may include experts in pediatric and adult neurosurgery, otolaryngology, orthopedics, and plastic and reconstructive surgery.

These physicians participate in a monthly neurofibromatosis conference to discuss creating the best treatment plan for each person in their care.