Neurofibromatosis Type 2: Benign Tumors of the Nervous System

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07/02/23

Neurofibromatosis type 2, or NF2, is a hereditary condition that creates tumors in the central nervous system, affecting hearing and balance. Neurologist Ashok Asthagiri, MD, develops close relationships with his patients who travel to our clinic from around the country.

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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.