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100% Hearing Loss from NFT2
Hello, my 20-year old step-son was diagnosed several years ago with Neurofibromatosis 2, and has now lost all hearing over the past couple of weeks, without much warning, due to tumors in his brain. We are horrified, and desperate to hear from anyone that has any experience with a similar situation. I'm not even sure what I'm looking for at this point, help with how to handle this, where to start, what to do. What resources can anyone recommend. Do we start learning ASL immediately, where do we do that? Please, any information is so greatly appreciated.
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A great loss.
The iPhone will transcribe the spoken word. (11 and above). Access this feature from accessibility in settings.
Caption call is another avenue with the phone.
Thank you so much, we will try this out.
Hello. So sorry to hear about your son's hearing loss. I'm not familiar with NFT and the damage it can do. But I do live with someone who had sudden hearing loss in one ear due to a virus some years ago. After consulting with her ENT, she decided to have a cochlear implant procedure on the ear with total hearing loss about six years ago. It has been life changing for her -- for us. She is now almost completely deaf in the non-operative ear, but is managing quite well with the CI, and the technology has improved immensely recently, so she is now able to manage her CI settings through her smartphone. It's major major surgery, so there's always Risk vs. Benefit. So discuss in depth with your doctors.
From my limited knowledge, if the auditory nerve is still intact and working, the CI should be able to restore hearing. But that's a big IF, since I don't know what physiological damage NFT can cause.
Just keep asking, keep talking, don't lose hope. Good luck.
Thank you so much for this information! I have since learned that there is a tentative plan for a cochlear implant. His case is complicated, as he also has a heart condition. Fingers crossed that the plan stays intact, and that everything turns out well. It's a very stressful situation, that's for sure.
I'm so glad to hear that you folks have had a positive outcome with the implant, it definitely gives me hope!
I encourage you to go to The American Cochlear Implant Alliance website for further information on cochlear implants, surgery, qualifications, etc. http://www.acialliance.org In most instances CI surgery is done on an outpatient basis. It is less invasive than it was years ago. The success rate is high.