Learn About Neurofibromatosis Type 2 (NF2)
Neurofibromatosis 2 (NF2) is a disorder in which tumors form on the nerves of the brain and spine (the central nervous system). It may be passed down (inherited) in families.
Although it has a similar name to neurofibromatosis type 1, it is a different and separate condition.
NF2; Bilateral acoustic neurofibromatosis; Bilateral vestibular schwannomas; Central neurofibromatosis
NF2 is caused by a change in the gene NF2. NF2 can be passed down through families in an autosomal dominant pattern. This means that if one parent has NF2, any child of that parent has a 50% chance of inheriting the condition. Once someone carries the genetic change, their children have a 50% chance of inheriting it.
Some cases of NF2 occur when the gene mutates on its own. This is called sporadic and is not inherited. Once someone carries the genetic change, their children have a 50% chance of inheriting it.
Symptoms of NF2 include:
- Balance problems
- Cataracts at a young age
- Changes in vision
- Coffee-colored marks on the skin (café-au-lait), less common
- Headaches
- Hearing loss
- Ringing and noises in the ears
- Weakness of the face
Acoustic nerve tumors can be observed or treated with surgery or radiation.
People with this disorder may benefit from genetic counseling.
People with NF2 should be regularly evaluated with these tests:
- MRI of the brain and spinal cord
- Hearing and speech evaluation
- Eye exam
Dafydd Evans practices in Manchester, United Kingdom. Evans is rated as an Elite expert by MediFind in the treatment of Neurofibromatosis Type 2 (NF2). Their top areas of expertise are Schwannomatosis, Breast Cancer, Neurofibromatosis Type 2 (NF2), Oophorectomy, and Salpingo-Oophorectomy.
Mass General Brigham Cancer Institute: Neuro-Oncology
Scott Plotkin is a Neurologist in Boston, Massachusetts. Dr. Plotkin is rated as an Elite provider by MediFind in the treatment of Neurofibromatosis Type 2 (NF2). His top areas of expertise are Schwannomatosis, Neurofibromatosis Type 2 (NF2), Neurofibromatosis, and Acoustic Neuroma. Dr. Plotkin is currently accepting new patients.
Johns Hopkins University
Jaishri Blakeley is a Neurologist in Baltimore, Maryland. Dr. Blakeley is rated as an Elite provider by MediFind in the treatment of Neurofibromatosis Type 2 (NF2). Her top areas of expertise are Neurofibromatosis, Schwannomatosis, Neurofibromatosis Type 2 (NF2), Neurofibromatosis Type 1 (NF1), and Laminectomy.
More information and support for people with NF2 and their families can be found at:
- Children's Tumor Foundation -- www.ctf.org
- Neurofibromatosis Network -- www.nfnetwork.org
Summary: Objective With this prospective natural experiment trial on neurofibromatosis type 2 (NF2) study, we hope to understand the factors leading to tumor progression and neurological disease burden in NF2. Study Population A total of 269 participants, ages 8-75, with a clinical or genetic diagnosis of NF2 will participate in this study. Design Study participants will be evaluated with a thorough physic...
Summary: This is a phase II prospective, randomized, double-blind, longitudinal study evaluating whether the administration of aspirin can delay or slow tumor growth and maintain or improve hearing in VS patients.
Published Date: December 31, 2023
Published By: Anna C. Edens Hurst, MD, MS, Associate Professor in Medical Genetics, The University of Alabama at Birmingham, Birmingham, AL. Review provided by VeriMed Healthcare Network. Also reviewed by David C. Dugdale, MD, Medical Director, Brenda Conaway, Editorial Director, and the A.D.A.M. Editorial team.
Goldblum JR, Folpe AL, Weiss SW. Benign tumors of peripheral nerves. In: Goldblum JR, Folpe AL, Weiss SW, eds. Enzinger and Weiss's Soft Tissue Tumors. 7th ed. Philadelphia, PA: Elsevier; 2020:chap 26.
Safier RA, Cleves-Bayon C, Gaesser J. Neurology. In: Zitelli BJ, McIntire SC, Nowalk AJ, Garrison J, eds. Zitelli and Davis' Atlas of Pediatric Physical Diagnosis. 8th ed. Philadelphia, PA: Elsevier; 2023:chap 16.
Sahin M, Ullrich N, Srivastava S, Pinto AL. Neurocutaneous syndromes. In: Kliegman RM, St. Geme JW, Blum NJ, et al, eds. Nelson Textbook of Pediatrics. 22nd ed. Philadelphia, PA: Elsevier; 2025:chap 636.