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?

I already had a modest amount of high-frequency hearing loss before a car accident earlier this year impaired my hearing further.

One peculiar result of the accident was that, suddenly, certain high-frequency notes in music were bumped up one or two notes in pitch, of all things. I.e., I might hear a high C as the D or E above it on the scale. So, it's not that I can't hear the note; I hear it as the wrong note. Obviously, this ruins Del Shannon's "Runaway" for me … and many other songs.

And, of course, the standard audiologist, trying to help people hear voices better, has no hearing test for this problem, has no solution for it, and my complaint was even far, far outside the wheelhouse of the ENT specialist I saw.

In addition, the ENT specialist had no idea where to send me for help with this.

Can anyone suggest a way to find a doctor (or institution) that would understand this problem and have some idea what to do about it?

Thanks.

REPLY

@buzzmccracken I love the name! Sorry about the issues you are having getting your issues addressed to satisfaction. I see Dr. Macias because he is an ear doctor. His information is Address: 926 E McDowell Rd suite 208, Phoenix, AZ 85006. Phone: (602) 257-4228. Best to you!

Liked by buzzmccracken

REPLY

What'did so did he sell u hearing aids or can you take script to Costco?

REPLY

My Costco HA experience lessons learned. Stay away from Kireland brand. If you buy Costco HAs they are locked and only Costco can make any changes.

REPLY
@buzzmccracken

I already had a modest amount of high-frequency hearing loss before a car accident earlier this year impaired my hearing further.

One peculiar result of the accident was that, suddenly, certain high-frequency notes in music were bumped up one or two notes in pitch, of all things. I.e., I might hear a high C as the D or E above it on the scale. So, it's not that I can't hear the note; I hear it as the wrong note. Obviously, this ruins Del Shannon's "Runaway" for me … and many other songs.

And, of course, the standard audiologist, trying to help people hear voices better, has no hearing test for this problem, has no solution for it, and my complaint was even far, far outside the wheelhouse of the ENT specialist I saw.

In addition, the ENT specialist had no idea where to send me for help with this.

Can anyone suggest a way to find a doctor (or institution) that would understand this problem and have some idea what to do about it?

Thanks.

Jump to this post

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

REPLY

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.

Liked by buzzmccracken

REPLY
@whatdidyousaynaz

My Costco HA experience lessons learned. Stay away from Kireland brand. If you buy Costco HAs they are locked and only Costco can make any changes.

Jump to this post

TO ALL AND WHATDIDYOU How is Costco' locking hearing aids a negative. How would that affect me? I read about Dr. Macias – too long of a wait and a long commute. And some bad reviews. (I don't have that condition so I can go to a lessor Dr. Does anyone know of a Dr. near Sun City West, AZ – I'm willing to drive – but, PHX is a hassle. Any suggestions ?

REPLY

Hi @mari, I see locking HA as a negative because ONLY Costco can make any adjustments. As for reviews, it is more likely that people tend to be more inclined to leave a negative review. On the contrary, I also know you can purchase fake reviews. Either way, it's the perception is 99% reality. Best to you!

REPLY
@whatdidyousaynaz

Hi @mari, I see locking HA as a negative because ONLY Costco can make any adjustments. As for reviews, it is more likely that people tend to be more inclined to leave a negative review. On the contrary, I also know you can purchase fake reviews. Either way, it's the perception is 99% reality. Best to you!

Jump to this post

Whether or not a Costco aid is a problem depends on two things. First, the skill of the person at Costco, and, second, how any audiologist you work with view Costco. I'm doubly fortunate because the gal at Costco is very knowledgeable and willing to work with me to get the most possible out of the aid (which is not their entry level but an Oticon by another name). The audi at the center in Portland (two hours away) believes that Costco aids are good and has sent me back to Costco with suggestions–which the Costco gal was perfectly happy to take the time to do. There's no limit to the number of times you can go back for adjustments without an additional charge, the warranty is great, long return for full refund period–all points in Costco's favor IF the one you go to has a good tech. Although I live on the coast in a very small town, I have a choice of several Costcos. If the one in Salem (just over an hour away) doesn't have a good tech there are several others within a two-hour drive (Portland, Eugene, Corvallis, etc., etc.). Price can't be beat!

REPLY
@buzzmccracken

I already had a modest amount of high-frequency hearing loss before a car accident earlier this year impaired my hearing further.

One peculiar result of the accident was that, suddenly, certain high-frequency notes in music were bumped up one or two notes in pitch, of all things. I.e., I might hear a high C as the D or E above it on the scale. So, it's not that I can't hear the note; I hear it as the wrong note. Obviously, this ruins Del Shannon's "Runaway" for me … and many other songs.

And, of course, the standard audiologist, trying to help people hear voices better, has no hearing test for this problem, has no solution for it, and my complaint was even far, far outside the wheelhouse of the ENT specialist I saw.

In addition, the ENT specialist had no idea where to send me for help with this.

Can anyone suggest a way to find a doctor (or institution) that would understand this problem and have some idea what to do about it?

Thanks.

Jump to this post

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.

REPLY

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.

REPLY
@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.

Jump to this post

@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.

REPLY

Hearing centers in Costco stores are always tucked away in a back corner that says "hearing." They usually only have one tech, one or two others who answer phones, sell batteries and accessories. You can check online to see pricing, but, if your hearing is bad enough to have brought you to this list, you probably will be moved right past the lowest priced one or two models. I have their Zerena aid, two steps up from the base model, but there are others even better. The tech will fit you with an aid and tell you to walk around the store for a few minutes to see how much it helps. It would be a good idea to take someone with you (familiar voice you haven't been hearing well) to get a better feel for how much the aid helps. If you decide to buy, you pay then but have 30 days to bring it back if you're not happy, for a full refund.

When I bought mine a year ago, I didn't have a smart phone, so the telecoil wasn't activated. When I got a smart phone last spring after my "good" ear was affected by the Meniere's monster, the tech activated the telecoil and paired the aid with my phone, so that calls (and Siri's directions if you turn that on) are sent directly to the aid, right in your ear. Good news for me is that I can actually hear and understand using my IPhone; bad news is that we have no reception here and, even though I've enacted the WiFi, it's not strong enough to yield decent reception, either for me or for the caller. I haven't yet been able to set up Apple ID, which is necessary to get apps, even free ones. I think that's because the WiFi doesn't work well enough (you need both computer access and the phone to set up Apple ID, dammit).

If you don't think the tech is right for you, try another Costco if there's one within a reasonable distance. The tech at the Salem, Oregon store is more aware of current apps than either of the audis at the CI center I went to for testing; not even the doc there was aware of Live Transcribe! I got the audi to print out test results to take back to Costco to have my aid adjusted (after my hearing took the huge downturn).

REPLY

BATTERY NOTE and Costco: Even if you don't buy your aid from Costco, you might want to buy batteries there. They sell 48 (four dozen!) for $8.99, packed in individual small packs of 8 each. This is much, much less expensive than OTC batteries.

REPLY
@joyces

Hearing centers in Costco stores are always tucked away in a back corner that says "hearing." They usually only have one tech, one or two others who answer phones, sell batteries and accessories. You can check online to see pricing, but, if your hearing is bad enough to have brought you to this list, you probably will be moved right past the lowest priced one or two models. I have their Zerena aid, two steps up from the base model, but there are others even better. The tech will fit you with an aid and tell you to walk around the store for a few minutes to see how much it helps. It would be a good idea to take someone with you (familiar voice you haven't been hearing well) to get a better feel for how much the aid helps. If you decide to buy, you pay then but have 30 days to bring it back if you're not happy, for a full refund.

When I bought mine a year ago, I didn't have a smart phone, so the telecoil wasn't activated. When I got a smart phone last spring after my "good" ear was affected by the Meniere's monster, the tech activated the telecoil and paired the aid with my phone, so that calls (and Siri's directions if you turn that on) are sent directly to the aid, right in your ear. Good news for me is that I can actually hear and understand using my IPhone; bad news is that we have no reception here and, even though I've enacted the WiFi, it's not strong enough to yield decent reception, either for me or for the caller. I haven't yet been able to set up Apple ID, which is necessary to get apps, even free ones. I think that's because the WiFi doesn't work well enough (you need both computer access and the phone to set up Apple ID, dammit).

If you don't think the tech is right for you, try another Costco if there's one within a reasonable distance. The tech at the Salem, Oregon store is more aware of current apps than either of the audis at the CI center I went to for testing; not even the doc there was aware of Live Transcribe! I got the audi to print out test results to take back to Costco to have my aid adjusted (after my hearing took the huge downturn).

Jump to this post

Thx for all the info.

REPLY
Please login or register to post a reply.