1. < Hearing Loss

Preparing for the Future

Posted by ellene @ellene, Feb 4, 2021

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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ellene | @ellene | Feb 5, 2021
In reply to @judyca7 "My hearing loss took place over 4 years. I guess I had hope that each time..." + (show)
@judyca7

My hearing loss took place over 4 years. I guess I had hope that each time there was another change that would be the last one. Up until three months ago I was still able to have one-on-one face to face conversations with people and talk on the phone. Now hearing is completely gone and I WAS NOT prepared for this. I really miss hearing the voices of the people I love.
Looking back, I would have taken a sign language class as you are doing. I would have learned everything I could about the technology while I could go into a tech store, ask questions and hear the answers. I would have researched cochlear implants thoroughly, maybe even started the evaluation for one as it is a long process. I would have gotten all my affairs in order as they say; because now it is so difficult to speak with a financial advisor, banker, or estate attorney. My daughters have been great help. One schedules all my doctor appointments and goes with me to take notes. She is also learning sign language. The other daughter comes over and writes down my phone messages and helps me with the computer. So if you have people who can help don't be afraid to tell them what is going on and ask for help.
I am also trying to find some device that will signal me when the phone or doorbell rings. Also looking into getting a companion dog as another source of support. But my understanding is that getting a companion dog is another long process so I wish I had done that in preparation also. I hope some of this is helpful to you. Judy

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@judyca7 Thank you for your reply. You mentioned some thing that I hadn't thought of. It was helpful

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mickey5909 | @mickey5909 | Feb 5, 2021
In reply to @ellene "@julieo4 Thank you for your reply. I am not really very upset about the probable loss...." + (show)
@ellene

@julieo4 Thank you for your reply. I am not really very upset about the probable loss. It is what it is. I have been under the assumption that there will be a lot of technology available as I lose my hearing. Many hearing folks have said I should learn sign language. I tell them that unless they learn sign language, what good will it do. Other than my sisters, no one has said, "I will learn it with you." So I haven't looked at sign language as being an option that will be helpful. I'm glad you reinforced that. I am already hooked into HLAA. I should probably attend meetings and be more diligent about reading their emails. Thanks again,

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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.

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barbb | @barbb | Feb 5, 2021
In reply to @ellene "My name is Ellen the e at the end is the first letter of my last..." + (show)
@ellene

My name is Ellen the e at the end is the first letter of my last name. I was diagnosed with the bilateral shwannomas (acoustic neuromas) at age 55. They were in the 6 to 7 mm range, if I remember correctly.I received the NF2 diagnosis at Mayo where I am being seen for the shwannomas at the same time. I am 57 now. I had full spine MRI and have no other tumors at this time. I have balance and disequilibrium issues. I also have oscillopsia, which drives me crazy. I had vestibular therapy for three months and did the exercises faithfully with not even the slightest improvement in balance, disequilibrium or the oscillopsia. I had Gamma Knife Radio surgery last April. There hasn't been any growth since then. The other symptoms have not gotten worse, with the exception of the hearing. My next MRI is in a year.

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@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!

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Mentor
Julie, Volunteer Mentor | @julieo4 | Feb 5, 2021
In reply to @ellene "@julieo4 Thank you for your reply. I am not really very upset about the probable loss...." + (show)
@ellene

@julieo4 Thank you for your reply. I am not really very upset about the probable loss. It is what it is. I have been under the assumption that there will be a lot of technology available as I lose my hearing. Many hearing folks have said I should learn sign language. I tell them that unless they learn sign language, what good will it do. Other than my sisters, no one has said, "I will learn it with you." So I haven't looked at sign language as being an option that will be helpful. I'm glad you reinforced that. I am already hooked into HLAA. I should probably attend meetings and be more diligent about reading their emails. Thanks again,

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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.

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1 reply
arrowshooter | @arrowshooter | Feb 6, 2021
In reply to @julieo4 "American Sign Language (ASL) is a beautiful language. It's syntax is based on the French language...." + (show)
@julieo4

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.

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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.

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jee | @jee | Jul 4, 2021
In reply to @barbb "@ellene, Hi there Ellene. (Is that your name?) I haven't been aware of any others with..." + (show)
@barbb

@ellene, Hi there Ellene. (Is that your name?) I haven't been aware of any others with NF2 on this list but I too, have NF2. One of the first questions that come to mind, is what was your age when you were diagnosed and what is it now (if you don't mind saying). I had no symptoms until I was 57 when I experienced hearing loss and I just turned 82. I am about 100% deaf in the ear where a 3 mm acoustic tumor was removed (at age 57) and now have a C.I. in my other ear and do quite well with that. Do you have other symptoms besides hearing loss? (I have not, except for the fact that only recently my balance has become an issue.) I ask these questions because your answers would supply clues as to what to focus on in preparing for NF2. All best to you!

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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!

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1 reply
barbb | @barbb | Jul 4, 2021
In reply to @jee "Hi, My husband had a Acoustic Tumor removed in 1991. He was 53 yrs. old. He..." + (show)
@jee

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!

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@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?

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1 reply
jee | @jee | Jul 6, 2021
In reply to @barbb "@ellene I am close to him in age and my acoustic was removed in 1996! I..." + (show)
@barbb

@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?

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One doctor said it could happen and another one wasn't sure about it. Not to helpful!!

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