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If you have ears to hear...

Posted May 07 2009 9:24pm
I had the pleasure of meeting Jennifer and Amanda at a meetup for the Fabulous ASL Learners of RC 2 months ago. Amanda is 13 and deaf, Jennifer is her stepmother. Jennifer met Amanda's father years ago as Amanda's teacher at the California School for the Deaf, Riverside. They communicate so well together, and have such an inspiring story. After a long battle with her insurance company, Amanda recently recieved a Cochlear Implant! They are awaiting the activation on August 12th, and then Amanda may be able to hear for the first time! I urge you all to read about their journey on Jennifer's blog.

I personally have been tested and found to not be a candidate for a Cochlear Implant. People with NF2 often have Auditory Brainstem Implants implanted when they have their vestibular schwannoma removed. For some this provides a type of hearing, for others it does not work at all. I have wanted an ABI myself for years, but fortunately neither of my VS are growing since being radiated with Gamma Knife, and the ABI itslef is not reason enough for a brain surgery. People who are deafened by NF2 are unable to hear because the tumors destroy the actual hearing nerve. For a CI you must have a working hearing nerve. That is why many NF2ers have ABI's, because an ABI bypasses the hearing nerve and instead uses electrodes planted deep into the brain stem.

I am trying my hardest to provide a place where people can learn about NF2, but I am not the most knowledgable patient, and can only share what I have learned myself. I encourage anyone with a deeper knowledge to share in the comments, and also welcome any questions or corrections.

Good Luck AMANDA!!!
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