Preparing for the Future
I have bilateral vestibular schwannomas and also neurofibromatosis type 2. I have lost most of my hearing on the left side and have 0% word recognition on that side. I have a very mild hearing loss on my right side. Yesterday I got BiCROS hearing aids which is making a huge difference. I had an appointment with my doctor yesterday. He asked if I was making preparations for losing my hearing. Apparently only a small percentage of individuals with this condition retain hearing. I told him I was taking a webinar class on lip reading, but other than that I didn't know what I needed to do to prepare. He didn't respond with suggestions after I made that comment other than to say that cochlear implants are likely in my future. I know technology will play a part in the future and don't need any suggestions regarding specific programs or apps right now. That is available in other threads. I guess what I want to know is how do I prepare for a significant hearing loss and/ or deafness?
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@judyca7 Thank you for your reply. You mentioned some thing that I hadn't thought of. It was helpful
That is how I feel about sign language. I have always wanted to learn it and it may come in handy for the places that do have sign language interpreters. But I very rarely see sign language interpreters and what good will it do if the people in my life don’t know it.
@ellene Hi again. At your mention of oscillopsia, I read up on it and learned that there are different manifestations of it, including frequency and severity so your brief mention of it and understandably "driving you crazy" doesn't give an idea of how dominant in your life it is i.e. frequency? The doctor you mention, is a neurologist, neurosurgeon? Do you know how many NF2 people s/he has seen? (I consider that an important question in terms of ability to advise you re the future.) Your age at diagnosis I believe is encouraging since my impression is that it is the people who are hit with it in their 20's (or earlier) whose problems are greater. May your hearing stay where it's at for a considerable time!
American Sign Language (ASL) is a beautiful language. It's syntax is based on the French language. It cannot be written. It is romanticized by many who think it's easy to learn. It isn't easy to learn. Learning ASL is like learning any other foreign language. The culturally Deaf community embraces it. Very few people who become hard of hearing as adults, especially in mid life, use ASL. Nor are they accepted into the culturally Deaf community.
I'm pleased to know that you have connected with HLAA. I encourage you to go to the HLAA website and look at some of the options with webinars and recorded Zoom meetings. There have been many of them since the pandemic started. They are educational and helpful, and they are all captioned. If you use hearing aids that have telecoils, buy a neckloop that you can plug into your computer. You may be amazed at how well you can hear that way.
Yes, ASL is a beautiful language and not easy to learn. Too few people know sign language to make it practical to use for general communication. But I continue to learn sign language a little at a time anyway. While I'm not fluent I can get by. I find it is a challenging way to exercise my aging brain, it is one more tool I can have for communication, and I'm just one more person who knows some ASL. Sign language doesn't require any batteries, cords, or devices, and it isn't expensive, and I have it with me all the time. But the negative posts about ASL above are correct.
Hi, My husband had a Acoustic Tumor removed in 1991. He was 53 yrs. old. He did lose his hearing in that ear and also has dizziness. He is now 83. The dizziness and hearing loss he is use to but when he blows his nose he gets a shock like feeling in his good ear. Have You experienced this at all? He has had this since right after the surgery in 1991. Thanks!
@ellene I am close to him in age and my acoustic was removed in 1996! I never experienced that. What do doctors say about it?
One doctor said it could happen and another one wasn't sure about it. Not to helpful!!