Neurofibromatosis Type 2 Treatment
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Living with neurofibromatosis type 2 is difficult. You’re dealing with symptoms like hearing and vision loss from tumors in your nervous system.
There’s no cure for neurofibromatosis type 2, but our experienced team at UVA Health can help make the symptoms better.
Neurofibromatosis Type 2 Treatment at UVA Health
Our team includes all the different specialists you need — neurologists, neurosurgeons, ophthalmologists (eye doctors), otolaryngologists (ear, nose, and throat doctors), and therapists. We’re skilled in treating the tumors neurofibromatosis type 2 causes, including tumors on your hearing and balance nerves (acoustic neuromas).
We’ll work with you to make a personalized treatment plan that meets your individual needs and gives you the greatest quality of life.
Watchful Waiting
If your tumors are small, we may recommend watchful waiting. We’ll do imaging regularly and treat the tumors if they get bigger and cause you more problems.
Surgery
If your tumors cause hearing loss or other problems, we can do surgery to remove them. Our neurosurgeons are experts in operating in the on these tumors without hurting important nerves and tissue nearby.
Gamma Knife Radiosurgery
Gamma Knife uses focused radiation on tumors without hurting the tissue nearby. It doesn’t use a scalpel or knife. It has a much shorter recovery time than regular surgery.
Help With Hearing & Vision
Hearing aids, cochlear implants, and vision aids can help you communicate better and give you higher quality of life.
Supportive Care
We offer therapy services to help with balance, coordination, and communication. These include physical, occupational, and speech therapy.
Our social workers can help you work through the emotional impacts of living with a chronic illness.
Benign Tumors of the Nervous System
Neurofibromatosis type 2, or NF2, is a hereditary condition that creates tumors in the central nervous system, affecting hearing and balance.
ASHOK ASTHAGIRI: NF2, or Neurofibromatosis type 2, is a genetic condition that can be inherited. But for some folks, it is the first time that we are seeing it in the family. This condition leads to the development of multiple tumors on the covering of the brain inside the brain and spinal cord and also on the nerves that course through our body. Some patients with NF2 will simply have two tumors that primarily affect the balance nerves and can cause hearing loss. And it can go to the other end of the spectrum where patients have multiple tumors. Rather than just focusing
on one tumor at a time, we're thinking of it as a more holistic approach to what is most important at any given time. I heavily rely on partnerships that I have with our audiologists and otologists who are specialists who help me manage the balance nerve, tumors and hearing difficulties that patients with NF2 may have.
BRADLEY KESSER: As the otologist neurotologist, I see NF2 patients for evaluation of hearing and balance disorders. I follow their hearing with audiograms, more hearing tests, every year and we talk about hearing rehabilitation options whether it's just to sit tight and go as we have been doing or a hearing aid or possibly even cochlear implantation if both ears start declining over time. I also helped Dr. Asthagiri, the neurosurgeon, in the surgical management of patients with NF2, so, I will help him with the surgical dissection of the tumor trying our best to preserve the hearing and balance nerve so that we can preserve hearing and balance function.
STEVEN NEWMAN: About two thirds of patients will have posterior subcapsular cataracts so they can develop some eye problems in NF2. Those patients will then get referred to me for baseline so we know what their vision is, whether there is any evidence to increase intracranial pressure, whether their cranial nerves are working normally, whether they have a seventh nerve dysfunction so that we can see where they are now and we can follow them if they develop any other problems.
ASHOK ASTHAGIRI: How my patients do is not just an outcome measure or some data table. How my patients do is very personal to me. If I could describe my relationship with patients with NF2, it's intimate, and I think that's mutual. Growing together and having this care be a partnership I think really makes it much more fulfilling, number one and number two, it makes it much more effective.
Confirming Your Diagnosis
The right treatment starts with the right diagnosis. Diagnosing neurofibromatosis type 2 can be challenging. That’s because it has symptoms similar to other conditions. Also, your symptoms might be mild or severe. If your diagnosis isn’t confirmed, we can help.
At UVA Health, our team of experts is experienced in diagnosing and treating neurofibromatosis type 2. Diagnosing neurofibromatosis 2 includes:
- Talking with you about your symptoms — We’ll talk about any problems you’re having with hearing, vision, and balance.
- Genetic counseling and testing — Neurofibromatosis type 2 runs in families and is caused by a faulty gene, which we can test for.
- Imaging — We’ll use magnetic resonance imaging (MRI) to check for tumors.
- Family history — We’ll ask whether you have blood relatives with neurofibromatosis type 2.
Genetic Counseling & Testing
If you have symptoms of neurofibromatosis type 2 or a family history, our genetic counselors can explain the benefits and risks of genetic counseling and testing.