Hearing Loss: Come introduce yourself and connect with others

Welcome to the Hearing Loss group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with hearing loss, and friends and family supporters. Whether you were born deaf or hard of hearing, experienced hearing loss after birth or with aging, it helps to connect with others. Together we can learn from each other, support one another and share stories about living with hearing loss, coping with challenges and celebrating milestones.

Let’s chat. Why not start by introducing yourself? What is your hearing loss experience? Got a question, tip or story to share?

Interested in more discussions like this? Go to the Hearing Loss Support Group.

@asklar02492

Hi. I'm 70 years old and hard of hearing in both ears, with a more severe loss than most people my age. My loss became noticeable at about age 50. I've had hearing aids since then, and don't think I could get along without them. I'm looking forward to having an online support group!

I've never been very aggressive about making sure my hearing aides were correctly fitted - I always assumed the audiologists knew what they were doing and the aids seemed to work well enough. But lately - maybe because the aids are more complex, or because my hearing is worse - the aids seem to need a lot of individualized adjustment. I have difficulty figuring out what's wrong and communicating it to the audiologist. I've been making frequent appointments to try to get them just right, but I'm worried that I'm wearing out my welcome. It's very frustrating - sometimes the adjustments are improvements, sometimes they make things worse.

I'm wondering if anyone has tips about communicating what their hearing problems are. I try to figure out whether it's with male or female voices, and to come up with a few words I've had a lot of trouble hearing. Is there a way to make finer distinctions? Is there some kind of hearing test I could do over the internet? Should the audiologists be testing me after each adjustment? I'd really appreciate some feedback. Thanks!

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@asklar02492 My story and age are similar to yours. When my hearing was last tested, a little over two years ago, my "hearing" of sounds was pretty much the same, but my comprehension of words had degraded which is much more difficult to correct than regular volume/frequency. When that was diagnosed Oticon Opn1 was recommended. At that time, a little over 2 years ago, that was the most advanced in helping with that type of problem. Perhaps the others have similar technology now.
I have a Caption Call phone but it stopped working a long time ago and I never got it fixed because I can hear much better over my iPhone than with a landline phone. I don't even bother to answer my landline phone, and everyone I know knows to call my cell.

@davekoh Dave, that is probably an email fix. Find the posts in your spam folder and mark them as "not spam". From that point forward they will no longer put the spam folder.
JK

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@engineer

Dear Colleen: I just recently connected to the hearing loss group. Today I sent a reply to Jamie Olson a Mayo moderator. My questions are about testing and when to see an audiologist and when to see an otologist. Also if Mayo has a recommended clinic in Indianapolis that has both an audiologist and an otologist. I will be looking for a response from Jamie or perhaps from you.

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@engineer My audiologist and otolaryngologists reside in the same offices, an ideal arrangement I think. Whether you go to an otologist, otolaryngologist, or audiologist would depend on what your problem is. If just hearing, then an audiologist, but if you think other factors are affecting your hearing then you probably want to see an otologist ot otolaryngologist.

To my knowledge, only an audiologist tests hearing, but I could be wrong. I am not familiar with otologists, I had to google that, but they sound very similar to otolaryngologists, just more specialized.
JK

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@contentandwell

@colleenyoung @cobweb. My hearing loss started about 14 years ago, apparently age related, or possibly related to cirrhosis which was not diagnosed until years later. It took a turn for the worse a few years ago, in clarity. My current aids, Oticon Opn1s, are generally considered to be the best for clarity, or were when I got them about a year and a half ago. Despite that, my hearing is still not great. I really need CC on the TV, and in a noisy environment I am lost. It is very isolating. I think unless there is a giant step forward this is the best I can expect, unfortunately.
JK

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Sounds like my journey. Lost my hearing over the last12 years. Hearing aids helped but like you I find I can’t hear with background noise, have to have others to repeat or I am just glad to hear what I can. It’s a frustrating life. “ I do have a name tag that says please talk to me face to face so I can read your lips”. I can’t really read lips, but the name tag has helped when I’m out. I too have the best aids available and still have many situations I can’t hear. I often apologize and say” I have a hearing loss. So I may ask you to repeat or speak more slowly.”

My question centers around should I take lip reading classes or sign language? I know I don’t enjoy going out with friends because I can’t enjoy the conversations. Any other way you have learned to help yourself?

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Yes, it does get frustrating. I've tried a sign language class over the internet but I'm seventy and my memory isn't what it used to be. Still, I picked up some good techniques for non-verbal, non-sign communication. I think I'd be better off taking a live class. But with sign language you need to find a whole new group of people to sign with!

I've heard that what you can pick up by lip reading is pretty limited - maybe 40% comprehension. But it could be useful combined with your hearing friends. I haven't really seen any live courses in the area where I live. Maybe there's something online.

Do you belong to HLAA (Hearing Loss Association of America). I go to a meeting once a month. Normally they're lectures plus social time. But the great things about the meetings are: 1) there are all sorts of technical aides that make it much easier to hear - the words are typed on to a screen, the room has a t-coil which communicates directly with many hearing aides, and all the lectures are amplified. All at the same time! 2)Almost everyone has a hearing loss and is very patient about communicating 3)You can see other people with hearing losses communicating successfully 4) There is a wealth of information and experience with hearing loss being shared at each meeting.

Right now I'm primarily concentrating on getting the most out of my hearing aids - I suspect that they could be better adjusted to my hearing loss so I keep going back to my audiologist for adjustments. My aids are behind the ear Phonaks with special added on plastic earmolds that insert into the ear - the earmolds seem to help quite a bit. And my audiologist had me buy a device (Phonak com Pilot) that can stream TV and telephone directly to my hearing aids - I can hear well with it, it gets me into the habit of listening and keeps my from turning up the TV volume so high it annoys my neighbors.

Overall, it's lots of work and lots of figuring out technical devices. Keeps me busy!

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@contentandwell

@engineer My audiologist and otolaryngologists reside in the same offices, an ideal arrangement I think. Whether you go to an otologist, otolaryngologist, or audiologist would depend on what your problem is. If just hearing, then an audiologist, but if you think other factors are affecting your hearing then you probably want to see an otologist ot otolaryngologist.

To my knowledge, only an audiologist tests hearing, but I could be wrong. I am not familiar with otologists, I had to google that, but they sound very similar to otolaryngologists, just more specialized.
JK

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I'm not sure what the difference is either. I think in my area there are mostly just audiologists and then a surgeon who does cochlear implants. Neither seems to think I have anything special going on with my hearing - just a severe case of sensoneuro (is that a word?) hearing loss.

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@contentandwell

@asklar02492 My story and age are similar to yours. When my hearing was last tested, a little over two years ago, my "hearing" of sounds was pretty much the same, but my comprehension of words had degraded which is much more difficult to correct than regular volume/frequency. When that was diagnosed Oticon Opn1 was recommended. At that time, a little over 2 years ago, that was the most advanced in helping with that type of problem. Perhaps the others have similar technology now.
I have a Caption Call phone but it stopped working a long time ago and I never got it fixed because I can hear much better over my iPhone than with a landline phone. I don't even bother to answer my landline phone, and everyone I know knows to call my cell.

@davekoh Dave, that is probably an email fix. Find the posts in your spam folder and mark them as "not spam". From that point forward they will no longer put the spam folder.
JK

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Hmm, I guess my comprehension could be making the hearing problem worse - I think that's a way of saying my brain isn't correctly processing the sounds I hear. From what I understand, hearing is kind of a "use it or lose it" deal. I'm making an effort to listen more (more TV, more music, books on tape, etc.) - I'm hoping maybe my braincells will revive a bit.

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@dollyh

Sounds like my journey. Lost my hearing over the last12 years. Hearing aids helped but like you I find I can’t hear with background noise, have to have others to repeat or I am just glad to hear what I can. It’s a frustrating life. “ I do have a name tag that says please talk to me face to face so I can read your lips”. I can’t really read lips, but the name tag has helped when I’m out. I too have the best aids available and still have many situations I can’t hear. I often apologize and say” I have a hearing loss. So I may ask you to repeat or speak more slowly.”

My question centers around should I take lip reading classes or sign language? I know I don’t enjoy going out with friends because I can’t enjoy the conversations. Any other way you have learned to help yourself?

Jump to this post

@dollyh I think lip reading would be more helpful. With sign language, you have to depend on other people knowing it too, and not too many do. I had no idea that they have lip reading classes. That sounds interesting. There is an online program that is minimal cost, that coaches you in better understanding of what is said. I can't remember the name of now but I will find out.
JK

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@asklar02492

Yes, it does get frustrating. I've tried a sign language class over the internet but I'm seventy and my memory isn't what it used to be. Still, I picked up some good techniques for non-verbal, non-sign communication. I think I'd be better off taking a live class. But with sign language you need to find a whole new group of people to sign with!

I've heard that what you can pick up by lip reading is pretty limited - maybe 40% comprehension. But it could be useful combined with your hearing friends. I haven't really seen any live courses in the area where I live. Maybe there's something online.

Do you belong to HLAA (Hearing Loss Association of America). I go to a meeting once a month. Normally they're lectures plus social time. But the great things about the meetings are: 1) there are all sorts of technical aides that make it much easier to hear - the words are typed on to a screen, the room has a t-coil which communicates directly with many hearing aides, and all the lectures are amplified. All at the same time! 2)Almost everyone has a hearing loss and is very patient about communicating 3)You can see other people with hearing losses communicating successfully 4) There is a wealth of information and experience with hearing loss being shared at each meeting.

Right now I'm primarily concentrating on getting the most out of my hearing aids - I suspect that they could be better adjusted to my hearing loss so I keep going back to my audiologist for adjustments. My aids are behind the ear Phonaks with special added on plastic earmolds that insert into the ear - the earmolds seem to help quite a bit. And my audiologist had me buy a device (Phonak com Pilot) that can stream TV and telephone directly to my hearing aids - I can hear well with it, it gets me into the habit of listening and keeps my from turning up the TV volume so high it annoys my neighbors.

Overall, it's lots of work and lots of figuring out technical devices. Keeps me busy!

Jump to this post

@asklar02492 I have heard so many positive things about HLAA. I wish there was one closer to me so I could go to the meetings. The closest one is over an hour away and the meetings are at night.

My problem is the same as yours, the words don't come through clearly to my brain. The level at which I can hear has not changed significantly, but the comprehension has.
JK

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Yes, I hope HLAA catches on and gets larger - I have to travel over an hour, but at least it's on Saturday so I can go during daylight hours. The other possibility is trying the HLAA annual Convention sometime this June in Rochester NY. I'm planning to go (I grew up in Rochester so at least the area is familiar). It seems a little daunting but I thought it was worth a try - it would be nice to spend a long period of time at an event where I can understand what's going on! There's another group called ALDA (Association of Late Deafened Adults) that has annual conventions too.

I truly wish there were more hearing loss support groups in more places. I'm in rural western Massachusetts where many HOH people don't even have hearing aids (probably an affordability issue), I think that without hearing aids and a fair amount of technical support, it's really tough to conduct a meeting. On the other hand, maybe we should all be more patient with our own and others' hearing loss. Social support and learning how others cope is so important.

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My name is Mike. I lost my hearing due to otosclerosis almost 20 years ago. I have mixed hearing loss in both ears. Had my stapes bone replaced on both ears due to the otosclerosis causing them to break down. I went to an HLAA convention 10 years ago and was hooked like a kid in a candy store. Not only do you get to be around hundreds/thousands of people with varying levels of hearing loss, but you also can talk to all of the major vendors that supply hearing aids, CI's and assistive listening devices. I learned so much that first time that I have been going almost every year. I also joined a local HLAA chapter near Philly as well as got involved with the Walk4Hearing which is the largest fundraiser for HLAA. All involvement is good as it helps me learn new things as well as I can now help others. I just retired and have made volunteering for HLAA my retirement 'job'.

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