Neurofibromatosis type 2 (NF2) is an uncommon genetic condition that results in the development of multiple brain tumors and spinal tumors. Almost all people with NF2 have two tumors affecting each of the hearing nerves, called vestibular schwannomas. Other benign tumors, such as meningiomas and ependymomas, may also develop and affect the brain and spine. About half the people with NF2 have a family history of the condition.
At Mayo Clinic, adults and teens who have NF2 are cared for by a multidisciplinary team of doctors and surgeons who are experts in this condition. People with NF2 most commonly experience hearing loss and imbalance. Additional symptoms, such as facial nerve paralysis, swallowing and speech difficulty, and arm and leg weakness, may develop as a result of tumor growth or side effects of treatment.
Care at the Neurofibromatosis Type 2 Clinic
At the Neurofibromatosis Type 2 Clinic at Mayo Clinic's campus in Rochester, Minnesota, you will receive comprehensive care for the diagnosis and treatment of NF2. The clinic uses several new methods of genetic testing that detect nearly 100% of all mutations in the NF2 gene. Additionally, you will have full access to physical therapy, balance therapy, hearing rehabilitation, eye care, genetic counseling, fertility medicine, psychiatric care and a number of options for tumor treatment.
The Neurofibromatosis Type 2 Clinic provides efficient, innovative care that addresses all aspects of the condition. Each person who enrolls in the Neurofibromatosis Type 2 Clinic receives regularly scheduled comprehensive evaluations that are coordinated among dedicated care team providers. In most cases, you will visit Mayo Clinic once a year to receive long-term care for your condition. Before your visit, you will be asked to complete a questionnaire that evaluates your current state of health.
During the week of your evaluation, you typically undergo an MRI study, hearing test and a neurological examination on Monday. The doctors and surgeons of the Neurofibromatosis Type 2 Clinic meet Tuesday morning. They review your test results and discuss your specific case to make sure you and your family receive the best individualized care possible. You'll then visit with the clinic team later that day to review the results of your testing and to develop a plan that meets your specific goals and needs. Additional testing and treatment may be scheduled for later in the week if needed.
Advanced treatment options
At the Neurofibromatosis Type 2 Clinic, doctors use the latest technology and techniques to treat the tumors that develop and related symptoms. Your treatment plan might involve one or more of the following approaches. Doctors and surgeons may also suggest clinical trials that you may be eligible for.
- Surgery. The type of surgery depends on the size, type, location and depth of the tumor. The surgeons in the Neurofibromatosis Type 2 Clinic are skilled at using minimally invasive surgery techniques to enhance your surgical outcome and reduce the risk of complications.
- Focused radiation therapy. Radiation therapy uses high-intensity beams of energy to treat tumors, including schwannomas and meningiomas. Radiation may be used alone, or it may be used after surgery to prevent further tumor growth. Radiation oncologists and neurosurgeons at Mayo Clinic use advanced treatment technologies, including stereotactic radiosurgery, intensity-modulated radiation therapy (IMRT) and proton therapy, to target tumor cells and spare nearby healthy tissue.
- Chemotherapy. Chemotherapy uses drugs to stop tumor growth and, in some cases, to improve certain signs and symptoms of NF2, such as hearing loss. Chemotherapy is often used when multiple fast-growing tumors are present. The experienced doctors of the Neurofibromatosis Type 2 Clinic select the chemotherapy drugs that are most likely to be effective against your tumor cells. Your care team helps you manage side effects of treatment.
- Reconstructive surgery. Depending on the size and location of the tumors, some people may need reconstructive surgery to restore facial nerve function and eye closure. Doctors at Mayo Clinic are skilled in using the latest techniques in reconstructive surgery to restore your ability to close your eye and move your facial muscles after treatment.
- Rehabilitation. Rehabilitation specialists in speech therapy, swallowing therapy, balance therapy, dietetics, physical therapy and occupational therapy help with relevant rehabilitation.
Your treatment team
At the Neurofibromatosis Type 2 Clinic, experts work together as a multispecialty team to provide exactly the care you need. Because all the providers on your team discuss your specific condition together, you receive a unified message that is tailored to your specific needs and priorities. And the team's collaborative approach to care means efficient care. In many cases, people are evaluated and have treatment scheduled the same week.
The Neurofibromatosis Type 2 Clinic team includes:
- Audiologists, who may perform hearing tests, hearing aid fitting, cochlear implant testing, and auditory brainstem implant and cochlear implant programming
- Brain surgeons (neurosurgeons), who participate in surgical tumor removal, radiation treatment and facial nerve restoration
- Ear surgeons (neurotologists), who participate in surgical tumor removal, hearing restoration and facial nerve restoration
- Clinic coordinator, who organizes your visits to make sure you receive the correct appointments in an efficient time frame
- Medical geneticists, who organize genetic testing and discuss the genetic aspects of your condition with you, including the risk of NF2 affecting other family members
- Medical oncologists, who provide chemotherapy and organize participation in special clinical trials when needed
- Neurologists, who provide a comprehensive physical examination to evaluate for changes in your nerve function, and who help treat neurological symptoms that develop
- Pathologists, who examine tissue that has been removed for diagnosis (biopsy) and during surgery
- Psychiatrist, who help assess and care for your long-term psychological well-being
- Radiation oncologists, who provide radiation treatment
- Radiologists, who closely evaluate your imaging scans to examine the characteristics of your tumors, including location, size, shape and growth
- Rehabilitation medicine specialists, who help with balance therapy and physical therapy
- Research coordinator, who organizes several ongoing research studies that you may participate in while receiving care
- Other medical providers, such as eye doctors, fertility doctors and spine surgeons, may be involved in your care depending on your condition
Dec. 31, 2019