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?

@contentandwell

@barbb That is certainly a good consideration. I intend to stay with the audiologist group I now currently go to, but if for some reason that changed I had wondered about Costco. I have a severe loss in one ear, profound in the other, so perhaps it is best for me to continue going to a reputable private audiologist group.
I say reputable because there are some in my area, basically storefront audiologists, who are less so. People I know who have gone to them have not been happy with the results.
Always check the qualifications of the audiologists. There are four where I go and all have doctoral degrees. I think that is required in some states, but not all, or perhaps it's one of those things that is "grandfathered" in and those in practice before doctoral degrees became a requirement were already in practice.
JK

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FWIW, the woman at the Costco I go to is NOT a full-fledged audiologist…but she's demonstrated that she actually knows more than two real audis I've seen. She's aware of the latest developments of things like speech-to-text apps…which neither the audis nor the doc at the Hearing Center knew anything about. Her level of caring about those she helps is extremely high, and she's willing/able to take the time to explain things. She wants everyone to have telecoils in their aids and have them activated, although they do sell some in-canal aids that don't have telecoils (recommended only for those with moderate loss). Just as it is with docs, the level of caring is far, far more important than the degrees on the wall, or where they originated.

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@joyces

FWIW, the woman at the Costco I go to is NOT a full-fledged audiologist…but she's demonstrated that she actually knows more than two real audis I've seen. She's aware of the latest developments of things like speech-to-text apps…which neither the audis nor the doc at the Hearing Center knew anything about. Her level of caring about those she helps is extremely high, and she's willing/able to take the time to explain things. She wants everyone to have telecoils in their aids and have them activated, although they do sell some in-canal aids that don't have telecoils (recommended only for those with moderate loss). Just as it is with docs, the level of caring is far, far more important than the degrees on the wall, or where they originated.

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@joyces I have not had occasion to see a hearing aid dispenser who was not an audiologist. Your experiences were somewhat negative but all four of the audiologists in the group I go to are very caring and very knowledgeable. The one who I consider to be "my" audiologist very obviously does care about helping me. My appointments with her are always long and very caring. She feels like a friend.

I am sorry your experiences have been negative because I think if an audiologist is good they generally do know more than someone who is a hearing aid dispenser, although there are always exceptions to every rule. You seem to have found one of those who are an exception. Since you are comfortable and she/he is serving you well then there is no reason to change. If your hearing problem gets more complex at some point, you may need to.
JK

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@contentandwell

@joyces I have not had occasion to see a hearing aid dispenser who was not an audiologist. Your experiences were somewhat negative but all four of the audiologists in the group I go to are very caring and very knowledgeable. The one who I consider to be "my" audiologist very obviously does care about helping me. My appointments with her are always long and very caring. She feels like a friend.

I am sorry your experiences have been negative because I think if an audiologist is good they generally do know more than someone who is a hearing aid dispenser, although there are always exceptions to every rule. You seem to have found one of those who are an exception. Since you are comfortable and she/he is serving you well then there is no reason to change. If your hearing problem gets more complex at some point, you may need to.
JK

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Unfortunately, the two audiologists, with the degrees to prove it, are both at the Hearing Center two hours away that does CIs, which is why I went there. The first one seemed rather uncaring, anxious to sell what they had. She advised me to junk the Costco aid for what had been my sorta hearing ear before Meniere's went bilateral and spend over $6,000 to buy a pair of aids from her…then come back in SIX MONTHS to be retested for a CI because I was 5% over the 50% level necessary to qualify for a CI that day (Meniere's fluctuates from hour to hour). Wow…that works out to $1,000 per month, assuming I'd have qualified for a CI. In addition, I've been told by other audis and my Costco person that my right ear, long useless, has so much recruitment that they wouldn't recommend an aid. The Hearing Center audis were unaware of the problems presented by recruitment!!!

The second audi at the same clinic appeared to be very caring, but neither she nor the doc who does the actual CI implants had heard of Live Transcribe about four months ago. She did, however, totally reverse what the first audi had said about Costco, gave them high marks. Even though the second audi appears to be caring, the almost total lack of knowledge either she or the doc have about Meniere's makes me hesitant to opt for a CI. I'd prefer to work with someone who knew something about the uniquely dreadful features of this disease before doing something that's not reversible.

If/when I decide on a CI for the ear that hasn't been useful for over 30 years, these are the two audis I'd work with! Neither of them seem to have any desire to learn about new things, unless it's something for them to sell. Bah, humbug…the Costco woman is caring, even knows quite a bit about Meniere's (which few docs recognize other than the name of the damned disease). She obviously is interested enough to keep abreast of everything new and learn how it may (or not) benefit her patients. Even though she's certain that I wouldn't benefit from an aid for my right ear due to recruitment, she's willing to let me try one to see if it helps. I would have taken her up on the generous offer…except going bilateral means that I can't stand wearing the aid in what used to be my good ear due to the new feature of recruitment, which means downright painful but meaningless noise. She also was able to adjust the aid so that I'm now able, on a rare day when I can hear, to listen to music…for the first time in over 30 years!

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@salledell

Hi. This is Sylvia. I experienced hearing loss in my left ear in my 50’s. Shortly after, I developed Ménière’s disease and have very little hearing in that ear.
I wear hearing aids in both ears and am fine with face to face conversation, but have trouble distinguishing words in a large room like a gym or swimming pool. This makes it difficult to follow instructions in exercise classes. I’m thinking possibly cochlear implants might help. Does anyone have experience with a cochlear implant?

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Hi I’m Ellen I have issue sitting in back seat not hearing driver now rt hearing air died . My left one was in for repair came back broken now two broken hearing aids and neumours closed due to covid 19

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Any way I can get hearing aids that work

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Hi good morning Ellen need good hearing aids that work one broke this week the left in for repair returned broken n to add to
My problems neumours senior card closed to covid 19. Any suggestion thank you

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@ellen307

Hi good morning Ellen need good hearing aids that work one broke this week the left in for repair returned broken n to add to
My problems neumours senior card closed to covid 19. Any suggestion thank you

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ellen307, you may want to consider a personal amplifier as a backup device. You'll have to use it with headphones or earbuds but they work really well. A couple of products that come to mind is Williams Sound Pocketalker 2.0 and the Comfort Duett. You can find them on Amazon, eBay, or here https://www.harc.com/collections/personal-amplifiers
.or here: https://www.harriscomm.com/equipment/personal-listening.html
Tony in Michigan

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@joyces

Unfortunately, the two audiologists, with the degrees to prove it, are both at the Hearing Center two hours away that does CIs, which is why I went there. The first one seemed rather uncaring, anxious to sell what they had. She advised me to junk the Costco aid for what had been my sorta hearing ear before Meniere's went bilateral and spend over $6,000 to buy a pair of aids from her…then come back in SIX MONTHS to be retested for a CI because I was 5% over the 50% level necessary to qualify for a CI that day (Meniere's fluctuates from hour to hour). Wow…that works out to $1,000 per month, assuming I'd have qualified for a CI. In addition, I've been told by other audis and my Costco person that my right ear, long useless, has so much recruitment that they wouldn't recommend an aid. The Hearing Center audis were unaware of the problems presented by recruitment!!!

The second audi at the same clinic appeared to be very caring, but neither she nor the doc who does the actual CI implants had heard of Live Transcribe about four months ago. She did, however, totally reverse what the first audi had said about Costco, gave them high marks. Even though the second audi appears to be caring, the almost total lack of knowledge either she or the doc have about Meniere's makes me hesitant to opt for a CI. I'd prefer to work with someone who knew something about the uniquely dreadful features of this disease before doing something that's not reversible.

If/when I decide on a CI for the ear that hasn't been useful for over 30 years, these are the two audis I'd work with! Neither of them seem to have any desire to learn about new things, unless it's something for them to sell. Bah, humbug…the Costco woman is caring, even knows quite a bit about Meniere's (which few docs recognize other than the name of the damned disease). She obviously is interested enough to keep abreast of everything new and learn how it may (or not) benefit her patients. Even though she's certain that I wouldn't benefit from an aid for my right ear due to recruitment, she's willing to let me try one to see if it helps. I would have taken her up on the generous offer…except going bilateral means that I can't stand wearing the aid in what used to be my good ear due to the new feature of recruitment, which means downright painful but meaningless noise. She also was able to adjust the aid so that I'm now able, on a rare day when I can hear, to listen to music…for the first time in over 30 years!

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@joyces Since you are so happy with and confident of the hearing aid dispenser then you should stay with her unless you do decide to go with a CI. At that point you obviously need to go to a hospital type of setting I think, or an audiologist associated with a hospital. I have not quite reached the point of needing a CI so I am not very familiar with the procedure. If/when I do go that route I would probably head to Mass(achusetts) Eye and Ear or Lahey Clinic which seems to have a large department for this type of thing. I live in southern NH so those two places would be the most convenient for me.

@ellen307 I have had the same problem but I have Oticon HAs and use the Connect Clip, worn by a person in the front seat, to hear what is being said. zit works great. Many HAs have similar accessories. I know Phonak has the Roger pen. If you are going to a good audiologist he/she should be able to advise on which HAs are the best for your hearing loss.
JK

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@ellen307

Hi good morning Ellen need good hearing aids that work one broke this week the left in for repair returned broken n to add to
My problems neumours senior card closed to covid 19. Any suggestion thank you

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Hi Ellen……. it's a bad time to have problems with hearing aids (actually is there a good time?). Neither of my aids are working but the clinic I go to is temporarily closed because of Covid 19. I am considering going to Costco for an evaluation because I have read such good things about Costco on this site. Not sure what to do since I have already spent $5800 for the aids I have. It seems like just one expense after another once you need hearing aids.

With everyone wearing masks now and staying six feet apart, I am missing out on almost all conversation. It is very isolating. I realize I am just venting here not offering you any real ideas except maybe Costco. Maybe they do free evaluations. Judy

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@judyca7

Hi Ellen……. it's a bad time to have problems with hearing aids (actually is there a good time?). Neither of my aids are working but the clinic I go to is temporarily closed because of Covid 19. I am considering going to Costco for an evaluation because I have read such good things about Costco on this site. Not sure what to do since I have already spent $5800 for the aids I have. It seems like just one expense after another once you need hearing aids.

With everyone wearing masks now and staying six feet apart, I am missing out on almost all conversation. It is very isolating. I realize I am just venting here not offering you any real ideas except maybe Costco. Maybe they do free evaluations. Judy

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Someone told me that the reason that you can't use accessories made for other aids with yours is that each manufacturer makes their aids to work on a slightly different frequency, obviously not to make the technology more available but to keep you loyal to their brand once you've spent additional $$$ on various accessories. Also, one of the disadvantages of going to Costco is that the aids you buy can't be adjusted by someone at an audiology clinic–and they're quick to let you know that they can't work on those "inferior" Costco aids, even though all of them are made by major manufacturers. (Nor can the aids you buy at a clinic be adjusted at Costco, I assume.) If the manufacturers actually cared about HOH people, they'd all work together to continually improve the technology. If you break your glasses frames, you can generally get them repaired at the place where you bought them…or repaired at any dispensary for a small price. Many of us enjoy the ongoing miracle of seeing clearly, for far less than a thousand bucks, but hearing well in normal situations appears to be asking far too much, even though we've spent thousands.

It's exactly like the drug biz: the pharmas all claim that drugs are so expensive because they spend gazillions developing and testing them, because they "have your best interests at heart." Bah, humbug! Forty years ago, my insulin-dependent husband could walk up to any drugstore counter and buy a vial of insulin made from beef or pork pancreases for $6. Then they figured out how to manufacture insulin artificially in labs and quit making animal insulin. A vial of the simplest insulin today costs close to $200–designer insulins twice or more. Unfortunately, all the insulin made in labs is too fast-acting for about 5% of diabetics, leading to getting to know the local paramedics and ERs really, really well. Seems it would be "too expensive" for them to manufacture a small amount of slower-acting insulin for that small percentage. We've been importing animal insulin, first from England, now from Canada, for years. To discourage us from doing that, the FDA requires 10 (yes–TEN) separate documents to be submitted with each order, including a PASSPORT for the insulin user!!! You can't convince me that the FDA is looking out for our interests! No, they're protecting the drug manufacturers. Each time we order (unable to use our excellent pharmacy insurance, of course), it costs a little over $1,000…and I'm stressed while waiting two weeks for the precious stuff to arrive, because the FDA can seize it at the border as an "illegal drug."

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@judyca7

Hi Ellen……. it's a bad time to have problems with hearing aids (actually is there a good time?). Neither of my aids are working but the clinic I go to is temporarily closed because of Covid 19. I am considering going to Costco for an evaluation because I have read such good things about Costco on this site. Not sure what to do since I have already spent $5800 for the aids I have. It seems like just one expense after another once you need hearing aids.

With everyone wearing masks now and staying six feet apart, I am missing out on almost all conversation. It is very isolating. I realize I am just venting here not offering you any real ideas except maybe Costco. Maybe they do free evaluations. Judy

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If you are having hearing aid problems during these difficult times, don't assume that your provider is completely closed to service calls. Many audiology groups are serving their clients by having someone on duty at their clinic each day. It is likely a drop off and pick up procedure, but if they are quality providers they do care about the people they serve. Recently, I had a communication from someone in a large metro area of Wisconsin who was frustrated that ALL the audiology clinics were closed in their area. I did some checking in our smaller metro area and found that most of the clinics here are providing urgent services. Do some due diligence to see what's going on in your area. If you have quality hearing aids and like your provider, you don't want to step down. Another suggestion which may be helpful to some people is to purchase a Williams Sound Pocket Talker. They can work with headphones and/or hearing aids with telecoils. Many people who don't wear hearing aids use them to amplify. Many hospitals keep them on hand to use with patients who have trouble hearing. They generally cost around $150. A device worth having. And, if you get those telecoil equipped hearing aids back in working condition, the Pocket Talker can be really helpful in noisy settings like restaurants. Everything costs money, but spent well it's worth it.

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@julieo4

If you are having hearing aid problems during these difficult times, don't assume that your provider is completely closed to service calls. Many audiology groups are serving their clients by having someone on duty at their clinic each day. It is likely a drop off and pick up procedure, but if they are quality providers they do care about the people they serve. Recently, I had a communication from someone in a large metro area of Wisconsin who was frustrated that ALL the audiology clinics were closed in their area. I did some checking in our smaller metro area and found that most of the clinics here are providing urgent services. Do some due diligence to see what's going on in your area. If you have quality hearing aids and like your provider, you don't want to step down. Another suggestion which may be helpful to some people is to purchase a Williams Sound Pocket Talker. They can work with headphones and/or hearing aids with telecoils. Many people who don't wear hearing aids use them to amplify. Many hospitals keep them on hand to use with patients who have trouble hearing. They generally cost around $150. A device worth having. And, if you get those telecoil equipped hearing aids back in working condition, the Pocket Talker can be really helpful in noisy settings like restaurants. Everything costs money, but spent well it's worth it.

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Do you need to go back to your aid provider to pair your aid(s) with the Pocketalker? I've found that some of the things I've purchased or downloaded don't work with my aid, even though it has a telecoil and worked with an IPhone…until the IPhone had problems and I switched to a Samsung. I was able to get IPhone conversations and driving directions delivered directly into my ear. However, even though I downloaded the app for Samsung to do the same, it doesn't seem to work. I've been interested in the Pocketalker for quite a while, but want to know that it will actually work before investing more money in something that's only marginally (or NOT) helpful.

Part of my problem is that we have zero cell reception here, plus our modem isn't strong enough to provide WiFi for my Samsung phone. When we moved to this house from a city full time six years ago, I'd never have left my cell at home…but, once you get accustomed to not using it at home because it has no reception, it's very easy to leave the house without it! I can't even text or receive texts here.

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