Almost totally deaf 67 yr old Nana.

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stephaniep

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Hi, I'm new here. I'm probably older than most on this forum, yet I suffer too. My hearing has been going for probably the last 15 years or more. Specialist said it's immune related and genetic and now aging is in the picture as well? . I have lost 70-80 percent of my hearing and it's worse now it seems, since I cannot hear my own voice or other sounds when I take my hearing aids out. I can still hear some with my hearing aids. Hoping some will come back so I can hear even a little sound without them so I can still feel connected to myself. I am having such a hard time coping with this. Thanx for listening.
 
Hi Stephanie. I'm on the same page as you are. A bit younger (50's) but still older than most of these youngster here. ;)

I've lost my hearing gradually over 20 years or so. Without aids I hear almost nothing, except tinnitus or maybe the dog barking right next to me. But nothing useful. My aids help me but even then I can discriminate only 50/60% of a conversation. Some soft spoken people, not at all. My wife and daughters (college age) are very supportive but I can tell it's annoying for them at times.

Welcome aboard. From one newbie to another.
 
Thank you all. Tommy, I hear you about the Aids. They help but do not make our hearing as before. Sounds like your hearing is progressive as well? Do you have sensorineural hearing loss? I find that even though voices can be loud, at times they are muffled and not clear enough to make out. I can't make out the TV even with hearing aids, so use closed captioning now. I find I can't hear doorbells anymore, sometimes I hear my dog barking, but she is 14 and a half and also has hearing loss and is blind, so she can't alert me as before. If I have to have this, then I want to get use to it or feel comfortable with it.

Deafdyke...the last specialist I went to see told me nothing will help me and that it will only get worse. Think she meant that for CI's as well. No doubt I was depressed after seeing her.
 
stephaniep said:
Thank you all. Tommy, I hear you about the Aids. They help but do not make our hearing as before. Sounds like your hearing is progressive as well? Do you have sensorineural hearing loss? I find that even though voices can be loud, at times they are muffled and not clear enough to make out. I can't make out the TV even with hearing aids, so use closed captioning now. I find I can't hear doorbells anymore, sometimes I hear my dog barking, but she is 14 and a half and also has hearing loss and is blind, so she can't alert me as before. If I have to have this, then I want to get use to it or feel comfortable with it.

Deafdyke...the last specialist I went to see told me nothing will help me and that it will only get worse. Think she meant that for CI's as well. No doubt I was depressed after seeing her.
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Stephaniep, as to your questions to me...yes. All of it. As far as understanding voices, it certainly has a lot to do with volume, but even with plenty of volume there are some voices I simply cannot understand. Probably due to how they articulate, modulate their voice, etc. And even those that I can understand I must really concentrate. If someone walks up and starts talking and I'm not ready to listen, forget it. And yeah, I could not possibly watch TV without captioning. The worst (to me) is music. If it's something I know, I can enjoy it as my brain fills in what's missing. New music I've never heard before? Just noise, really.

Yes mine has been progressive. I was at the audiologist this AM and he measured my better ear as 110 dB loss in the mid/high frequencies. 65% speech discrimination in the better ear.
 
stephaniep said:
Thank you all. Tommy, I hear you about the Aids. They help but do not make our hearing as before. Sounds like your hearing is progressive as well? Do you have sensorineural hearing loss? I find that even though voices can be loud, at times they are muffled and not clear enough to make out. I can't make out the TV even with hearing aids, so use closed captioning now. I find I can't hear doorbells anymore, sometimes I hear my dog barking, but she is 14 and a half and also has hearing loss and is blind, so she can't alert me as before. If I have to have this, then I want to get use to it or feel comfortable with it.

Deafdyke...the last specialist I went to see told me nothing will help me and that it will only get worse. Think she meant that for CI's as well. No doubt I was depressed after seeing her.
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I would get a second opinion..I'm so sad for you if that's true!
 
stephaniep said:
Deafdyke...the last specialist I went to see told me nothing will help me and that it will only get worse. Think she meant that for CI's as well. No doubt I was depressed after seeing her.
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I concur with deafdyke, get a clarification or second opinion on that. When I spoke with my ENT about CI (I'm not there yet, but thinking ahead) he indicated that there were only a few exclusionary factors there. I know that another new user here has been told that she's not a CI candidate due to nerve degeneration from meningitis, but most people with a working auditory nerve should qualify. Definitely revisit that. Even if you're not ready for such a thing it's always good to know your future options.
 
Thank you all. I've been to three Specialist, but I don't understand nerve deafness, is it a dead nerve issue or is it a lack of cilia hairs, I don't think they know for sure, does that mean no one with sensorineural loss can get Cochlear implants? My audiologist knows more than the Specialists and suggested that I don't have cilia hairs moving the sound? She said there is still CI's and she said they are working on stem cell research to replace cilia hairs, but hey, they can't do it fast enough for me, it's a dream of the future.
 
stephaniep said:
Thank you all. I've been to three Specialist, but I don't understand nerve deafness, is it a dead nerve issue or is it a lack of cilia hairs, I don't think they know for sure, does that mean no one with sensorineural loss can get Cochlear implants? My audiologist knows more than the Specialists and suggested that I don't have cilia hairs moving the sound? She said there is still CI's and she said they are working on stem cell research to replace cilia hairs, but hey, they can't do it fast enough for me, it's a dream of the future.
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Obviously this is a question for your doctors. But in general Sensorineural hearing loss (SNHL) refers to damage/death of the cochlear hair cells, which of course can have any number of causes. But in these cases the auditory nerve is generally intact, which is what is needed for a CI since a CI bypasses the damages ear structure (including those dead hair cells) and stimulates the undamaged auditory nerve directly.

Your doctors should be able determine whether the auditory nerve is still functioning using various tests, imaging, or whatever. But the phrase "nerve deafness" is often used to describe SNHL, and doesn't necessarily mean that the auditory nerve itself is damaged.
 
Thanks Tommy, that is giving me some hope and I will bring it up to the Audiologist the next time I see her. She mentioned CI's but I told her what the ENT said and she became quiet and then tried to encourage me. She did say before that I don't have cilia hairs or to that effect? Yes, before that I did have testing done with the ENT's but the recent one did not do any more tests then they all do. She never did anymore tests than the Audiologist, in fact less, the Audiologist was more thorough. From the tests I've had over and over again, nothing was found but the SNHL, no growths or tumors, and so on., so how can the ENT be so sure that my hearing loss is untreatable. She said Immune related and Genetic and there's nothing that will help me. Those are her words. Will hold on to the hope that I will get at least some of it back. Also I should bring up that I had a total of 3 unrelated major surgeries in a little over a year which used anesthetic. I read somewhere that it can take out hearing as well and that some can come back but it takes up to a year for the cells to regenerate. Anyone hear about it?
 
stephaniep said:
Thanks Tommy, that is giving me some hope and I will bring it up to the Audiologist the next time I see her. She mentioned CI's but I told her what the ENT said and she became quiet and then tried to encourage me. She did say before that I don't have cilia hairs or to that effect? Yes, before that I did have testing done with the ENT's but the recent one did not do any more tests then they all do. She never did anymore tests than the Audiologist, in fact less, the Audiologist was more thorough. From the tests I've had over and over again, nothing was found but the SNHL, no growths or tumors, and so on., so how can the ENT be so sure that my hearing loss is untreatable. She said Immune related and Genetic and there's nothing that will help me. Those are her words. Will hold on to the hope that I will get at least some of it back. Also I should bring up that I had a total of 3 unrelated major surgeries in a little over a year which used anesthetic. I read somewhere that it can take out hearing as well and that some can come back but it takes up to a year for the cells to regenerate. Anyone hear about it?
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It is possible your hearing loss will not be helped by a CI, but if you don't feel confident in your ENT's diagnosis, you might want to have your audiologist refer you to a CI clinic. A good clinic should be able to tell you if you're a candidate for a CI and if not tell you exactly why not. (Yes, not all CI clinic's are equal, just like everything else).
 
stephaniep said:
Thanks Tommy, that is giving me some hope and I will bring it up to the Audiologist the next time I see her. She mentioned CI's but I told her what the ENT said and she became quiet and then tried to encourage me. She did say before that I don't have cilia hairs or to that effect? Yes, before that I did have testing done with the ENT's but the recent one did not do any more tests then they all do. She never did anymore tests than the Audiologist, in fact less, the Audiologist was more thorough. From the tests I've had over and over again, nothing was found but the SNHL, no growths or tumors, and so on., so how can the ENT be so sure that my hearing loss is untreatable. She said Immune related and Genetic and there's nothing that will help me. Those are her words. Will hold on to the hope that I will get at least some of it back. Also I should bring up that I had a total of 3 unrelated major surgeries in a little over a year which used anesthetic. I read somewhere that it can take out hearing as well and that some can come back but it takes up to a year for the cells to regenerate. Anyone hear about it?
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Well, I'm not trying to create any false hope, simply pointing out that one can have Sensorineural Hearing and still have a functioning auditory nerve. A comment like "there's nothing that will help you," can mean different things depending on the context. It could mean that "nothing will help you" regain your natural hearing, but not necessarily meaning that aids/CI's wouldn't benefit you. Or, she could have meant that the nature of your loss is, in fact, untreatable by CI's.

I'd get a second opinion, or at least a return visit to your ENT for clarification. No need to leave any cards on the table.
 
I am 61 and got a cochlear implant in May. I am late deafened from menieries disease. It was the best thing I have ever done in my life. I have sensorineural hearing loss. I would get further clarification as to why you might not be a candidate for a CI.
 
Thank you, I will find out more when I make my next appointment with the Audiologist. Guess she can refer me, if she thinks there is hope for CI's. Think the last Specialist came up with that diagnosis because I told her that my mom lost her hearing later in life (60's) , so she automatically said it had a genetic factor and she also took into account my immune condition. Thank you for all the replies, the realistic ones, and also the hopeful ones. Right now I'm living on hope and a prayer.
 
Had my appointment with the Audiologist. I requested no more tests because I'm not ready to hear that it's worse. and the test would confirm that. What am I going to hear on a Hearing test if I can't hear anything without my Hearing Aids and can't make out the sound of my own voice? She said that I should still have one. Well, she said that even though I am totally deaf without hearing Aids, I can still hear some with them so I'm still not a candidate for Cochlear Implants. In this Province they use that when all other methods to improve hearing have been exhausted, after that a person goes into a program for various tests to see if they would even be eligible? She offered to put in a higher speaker in the remaining ear. I already have one in my right ear. I asked her about the Shake up alarm and got plenty of information about that, so I will be ordering that. She also mentioned Streaming and I have to look into that more, if I can't hear, will streaming help me, or do I still have to use my Oticon Remote for my hearing Aids. I asked her about the Captioned phone, and was told, I would have to order the service through my Provider, and the calls would be made through an Operator, and then I would read the calls, kind of sounds like a bother, when I asked her if just texting would be a better option. She agreed. That about sums it up.
Thanks for listening.
 
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I cannot find anything about your location (I have looked through what threads I have found you posted in) — not even what country you are in let alone anything more specific. Knowing at least generally where you are would make a difference in what we might suggest.
 
stephaniep said:
Had my appointment with the Audiologist. I requested no more tests because I'm not ready to hear that it's worse. and the test would confirm that. What am I going to hear on a Hearing test if I can't hear anything without my Hearing Aids and can't make out the sound of my own voice? She said that I should still have one. Well, she said that even though I am totally deaf without hearing Aids, I can still hear some with them so I'm still not a candidate for Cochlear Implants. In this Province they use that when all other methods to improve hearing have been exhausted, after that a person goes into a program for various tests to see if they would even be eligible? She offered to put in a higher speaker in the remaining ear. I already have one in my right ear. I asked her about the Shake up alarm and got plenty of information about that, so I will be ordering that. She also mentioned Streaming and I have to look into that more, if I can't hear, will streaming help me, or do I still have to use my Oticon Remote for my hearing Aids. I asked her about the Captioned phone, and was told, I would have to order the service through my Provider, and the calls would be made through an Operator, and then I would read the calls, kind of sounds like a bother, when I asked her if just texting would be a better option. She agreed. That about sums it up.
Thanks for listening.
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Well, on the up side it sounds as if the whole “not eligible for a CI” is based on your residual hearing, not that your underlying condition prohibits it medically. You use the term province so I’m guessing that you're not in the US. I certainly can’t speak to the candidacy for such things in other countries, but I’ve never heard of being denied a CI due to having even a minimal amount of hearing with an HA.
 
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