Hearing Loss: Come introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Tue, Feb 5 12:02pm

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?

@capausz

@mari, I live in Sun City Grand, and I highly recommend Costco. I tried a few hearing aid providers in SCW, and without question, Costco has been the best solution for me, both in terms of quality as well as service. Ass in warranty and price, and I think you will find Costco is the best option by far. I love the unlimited free cleanings, free replacement of ear buds, availability, adjustments, retesting, and options in terms of brands and models. I chose Resound brand from Costco, and they continue to be a good option for me.

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Thx for all the info. Seems like a good option. Do you have a certain worker that you like the best?

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@mari

Thx for all the info.

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@ejoyces! I have had great experiences at the Costco in Hillsboro. And the Costco/Kirkland batteries are great.

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@mari

Thx for all the info. Seems like a good option. Do you have a certain worker that you like the best?

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@mari, I will look for his card and let you know.

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@mari

Thx for all the info. Seems like a good option. Do you have a certain worker that you like the best?

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@mari, Thanks for the info about Costco. We finally have a Costco. What is the best source for hearing tests? Does Costco hav clinicians available where you are? Thanks for the info…have some joy today. Chris

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There's usually one tech who does tests and actually sells the aid that's best for you. That's why, if the tech at your store isn't a good match for you, you should try another Costco if there's a second one within a reasonable distance. FWIW, you'd probably make two trips not long after buying an aid(s) in order for the tech to fine tune them for you after you've worn it/them for a few days. I went back once last year, then (same aid) this year three times: for a new test after my aided ear went really bad plus had the aid adjusted to handle the new loss, once to activate the telecoil and pair it with my new IPhone, once to buy the mic and have it paired with my aid. That's five trips over the period of a year, and three of them were after a huge downturn in hearing.I was able to "pair" every trip with some other trip I needed to make to Salem, so I actually never made a special trip.

The Bernefon Zerena that I bought cost just over $1,600. The mic I bought to pair with it (sends sounds directly to the aid in your ear) cost just under $200. The Costco tech told me a year ago that recruitment in my bad ear would make an aid useless/bothersome. She offered to fit a second one for that ear and let me wear it for a week, but I trusted her advice and didn't do that. In contrast, the first audi at the CI clinic told me that I had failed the test for a CI in my useless ear by only 5% (depends upon hearing in your "good" ear). She recommended that I toss my Costco aid and buy two "better" ones from her clinic to the tune of $6,000–and then come back for a repeat test in six months. If the test then proves that I qualify for a CI, I'd have spent money for aids that might need to be replaced. Yikes! The second audi I saw, for a consult on how to live with the new loss/distortion/recruitment said that the Costco tech was correct in the aid she had sold me as well as the fact that an aid for my bad ear wouldn't be satisfactory, due to recruitment on top of not much hearing to aid. That really reinforced my trust in the Costco tech. Of course, I'm really glad that I didn't follow the swell advice of the first audi at the CI clinic!

Biggest downturn at Costco is that they don't have a way, at least at the Salem store, of taking messages if the phone's busy when you call.

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@artscaping

@mari, Thanks for the info about Costco. We finally have a Costco. What is the best source for hearing tests? Does Costco hav clinicians available where you are? Thanks for the info…have some joy today. Chris

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I found that the FREE hearing test at Costco (no charge even if you don't buy an aid) yielded the same results as the one that cost over $300 at the CI clinic. Every Costco hearing center has at least one tech who does tests and recommends/adjusts aids. The Costco center has soundproof booths, same as the ones elsewhere, and the tests are done the same way. Printed results were very close–and my hearing, thanks to Meniere's is different from day to day, even minute to minute.

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@mari

IF anyone has suggestions – i live in Sun City West, (the west valley) 45 min. from Phoenix, az. If you know of someone that you can recommend – let me know.? Otherwise I'll go to Costco, – if I resort to that then who should I see in Costco ? (I gave up looking to get stem cells in NY hospital – doesn't exist there.

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What did you want stem cells for? (BB from NYC!)

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I called all over LANGONE MED CENTER, DR. LEDDIE looking for dr. that did stem cell for hearing. After 3 hours – it does not happen.

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13 emails in one day each separate by group members So frustrating and time intensive Please group them again

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I agree. I participate in a number of online discussion groups (and have for many years). This is the only one that does not group messages. It's not just a matter of the inconvenience of having lots of separate messages. Much more importantly, when messages are not grouped into threads, users lose the flow of the discussion, which discourages participation .

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thank you for understanding A short while ago messages were grouped. I will not be able to continue in the group as a reader.or a poster

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@contentandwell

Welcome to Connect, @buzzmccracken You sure do have an unusual problem! I have never heard of such a thing. I doubt there are many audiologists who are practiced in such a unique problem, unless your hearing aids can be adjusted to a different setting. I hope you can find an audiologist who can help you, it sounds as if music is very important to you. I wish I could help more, but as I said, the only thing I can think of is a different setting on your HAs since obviously your hearing cannot be changed. You might want to see if there is a specific brand of hearing aids that is favored by people in the music industry.
JK

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Thanks. I think analog HA's more faithfully convey more frequencies to the ear than do digital, so they would improve the general music-listening experience, I think. I don't expect a device of any kind will make my brain or ear change a "D" back to a "C", though. Nonetheless, I DO want to learn what the experts have to say about that problem.

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@joyces

In response to @buzzmccracken, some of us have a similar problem, part of the special "features" of Meniere's Disease. We not only lose hearing and gain tinnitus, but fight distortion and recruitment. On top of that, our hearing (or lack thereof) fluctuates from day to day, even hour to hour. When Meniere's first became a problem for me, I was in my 40s and was an active amateur classical musician, playing in ensembles and orchestras. The godawful sounds I heard from the other members of the group plus my inability to hear anything correctly, ended that for me. For years, I couldn't stand to listen to music, because it both lacked some tones entirely and was distorted and strange. Just when I'd gotten used to listening to music a little again (adding all the missing flute sounds in my mind), Meniere's struck my so-called good ear. I had always thought tinnitus was just an annoyance that could be overcome by concentrating on other things, but this is a whole new experience, as is the terrible amount of distortion and recruitment. In my kitchen, I can often tell that something's running, but whether it's water from the faucet or the electric heat fan or an appliance, it all sounds just the same. Most days, my car runs virtually silently, but some sounds intrude and are downright painful as they slice through my head.

From what I've learned, this problem of hearing things incorrectly doesn't show up on audiograms, nor can it be corrected by resetting my aid. Worse, if I'm having an unusually good day while the test is being done or HA adjusted, it will appear that I have far more hearing than I usually have. So far, as luck will have it, I've never been tested during a bad day, even though sometimes bad days run for weeks at a time. It's all totally frustrating. I cannot listen to music at all, as all higher instruments sound like kazoos. I did try to go to a local concert done by the Air Force brass quintet. Who would have thought that the Air Force would use kazoos instead of trumpets and a French horn? AARGH! The tinnitus in my newly-affected ear is so loud that it wakes me up during the night. I've known for a long time that Van Gogh sliced off his ear due to Meniere's…and know I understand why he did it. Imagine living with this dreadful disease and not knowing why everything is so strange! Even though I know what's happening, it's very hard to put up with it. The final insult is something referred to as "auditory hallucinations" where you clearly hear something you haven't heard for years, even decades.

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Thanks, very much, for your detailed reply, especially the description of Meniere's Disease. I'll make a note of that one. I'm sorry to hear what a mess you have on your hands with your hearing, and don't even know if I'd be able to put up with it. I'll count my blessings. Be well.

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@joyces

Although it seems counter intuitive, sometimes it helps clarify what you're hearing if you turn your aid down a bit.For me, that cuts down on the overly loud "sss" and "hard" sounds. It's still difficult for me to understand words, but less volume helps…sometimes. It doesn't work at all with music, however.

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Thanks for the tips. I've monkeyed with volume a bit. Since the HAs' purpose is help me hear the high frequencies of speech, I DO turn them down in order to reduce those frequencies when I'm listening to music. Improves quality a bit.

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@cosette3

thank you for understanding A short while ago messages were grouped. I will not be able to continue in the group as a reader.or a poster

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Hi @cosette3 @editored and others,
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