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.

@zaa

How did they determine that the cochlear hairs were damaged? Do you suffer from tinnitus also?

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First, the tinnitus in my damaged R-ear persists since the work related injury in May 2019 and has not diminished with OSIA2, noir would it have with any bone conduction device. I can’t speak to the traditional Cochlear implants you hear about; but I doubt it? I believe tinnitus is more of a neuro condition in the brain.
As for how they determined the inner/outer hairs of my cochlea hairs were damaged I can only assume it’s based on the Audiogram tests they ran. In particular, I would say it had to do with the progressive decline of my word/speech recognition (76% from time of injury down to 42% this past June)? I’m sure they have other means of determining this.
Keep in mind that my Phonak hearing aid did not improve matters as hearing aids in general only help amplifying sounds and if the clarity in my injured ear never improved, all I was hearing was an amplified sound of unrecognizable words or speech. That would be a great question for your Audiologist or Neuro otologist. I can only state that with my OSIA2 bone conduction implant that the clarity in which I hear things is much better. Good luck to you

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@pennyr

I agree with you - but the Resound HA will be another $2,000 dollars in what has been an expensive year, and I have two really good Widex aids. I will probably upgrade within a year or so. Having the implant and the aid controlled by the same app just makes perfect sense, I know. I have telecoil, not in the aids themselves but in my sound assist device, but don’t use it because my hearing discrimination is so bad. I’ve rather given up on live theatre etc but hope to get back to it.

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Widex is a good quality hearing aid. I understand how you feel about changing hearing aids at this point if those you have a working well. Obviously, having the brand that collaborates with the CI brand you choose makes sense if you are ready to upgrade your hearing aid. If not, work with it. Get a neckloop and use the telecoils in both the Widex aid and the CI with audio devices. I think you'll find the sound and clarity improves greatly. I do this with my laptop if I'm listening to a podcast. Also use a good old fashioned Walkman portable radio to listen to some sports events. It works!

Like you, I love Widex! I had purchased a new Widex aid prior to upgrading to the N6 Cochlear processor, then found out I should have bought ReSound. I stuck with the Widex and adjusted well although I had to use a neckloop to make them work together with some asistive technology. In a looped room it's easy to just use both t-coils. With other audio devices you need to plug into, no. Now, about to upgrade to a new CI processor (N8), I will likely get a ReSound aid when I get my next hearing aid. It's complicated, but we can simplify a lot of things if/when we use the telecoils in our devices. Insist that your audiologist help you with this if s/he has not already done so.

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@zaa

Thanks to the new law that past in 2022, there’s now lots of OTC hearing aids available. For me, who has severe to profound hearing, I won’t order online or go to retail stores to get advice. I want to see audiologist and get recommendations. This advice is also what is recommended by Cleveland specialists. My Medicare Advantage plan has allowed some $ to be used only at a company I do not trust so I am dismayed. I now cannot even see a audiologist at health partners clinics because they will only use Tru Hearing aids. Anyone else in this situation? All of my expenses will be out of pocket plus I’ll be paying into insurance that isn’t benefiting me. I’m looking into new health plan but feel very sad about this discrimination.

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in reply to @zaa Yes about the OTC hearing aids. Many who waste their money will be disappointed. My healthcare plan also offers hearing aid benefits, but I refuse to even consider their company. Afterall, the hearing test is done on the phone, and I cannot hear on the phone without a hearing aid! I was fortunate to connect with a local hearing aid dealer who is very astute and honest, and she has provided me with a refurbished hearing aid as part of a program where she "adopts" those who are unable to purchase the high tech hearing aids like my sister wears. And let me tell you, those hearing aids my sister has and which she pain a small fortune for, really do not help her as much as they would help you or I because she waited too long to get hearing aids in the first place !

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Earlier this year I upgraded my 4 year old Oticon hearing aides to new Phonak hearing aides. Today I went to Connect Hearing center for quarterly free checkup. They updated firmware and checked them out. They are working fine. I listen to audio books via bluetooth connection to iphone 14 when I go to the gym. And I listen to TV via Phonak bluetooth TV adaptor which make TV sound like sereo surround sound. The Oticon hearing aides used batteries I had to replace every 4 days. The new Phonak aides are recharable by placing them in charter at night. I don't know what the firmware update did, but I know they are constantly working on ways to improve filtering out noise and making voices clearer so it is good to get updates regularly.

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@dsh33782

Earlier this year I upgraded my 4 year old Oticon hearing aides to new Phonak hearing aides. Today I went to Connect Hearing center for quarterly free checkup. They updated firmware and checked them out. They are working fine. I listen to audio books via bluetooth connection to iphone 14 when I go to the gym. And I listen to TV via Phonak bluetooth TV adaptor which make TV sound like sereo surround sound. The Oticon hearing aides used batteries I had to replace every 4 days. The new Phonak aides are recharable by placing them in charter at night. I don't know what the firmware update did, but I know they are constantly working on ways to improve filtering out noise and making voices clearer so it is good to get updates regularly.

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@dsh33782

I've worn Phonaks for many years and have new Phonak Lumity UP 90..Amazing clarity for me and quite an improvement. I wear 2 BTEs. I am able to get more sound going into my nearly defunk left ear which is a great help. Only had them for little over 2 weeks. Brain still adjusting. Phonak has the power I need with 675 batteries. I'm not a fan of rechargeable aids and I use Power One batteries which give me about 2 and 1/2 weeks of use.

FL Mary

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@imallears

@dsh33782

I've worn Phonaks for many years and have new Phonak Lumity UP 90..Amazing clarity for me and quite an improvement. I wear 2 BTEs. I am able to get more sound going into my nearly defunk left ear which is a great help. Only had them for little over 2 weeks. Brain still adjusting. Phonak has the power I need with 675 batteries. I'm not a fan of rechargeable aids and I use Power One batteries which give me about 2 and 1/2 weeks of use.

FL Mary

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Mary
I can see whete 2.5 weeks vs 4 days for batteries would make it easier to manage. But I'm happy just putting my ears to bed in charger when I go to bed and there is no need to change batteries. Now if I went hiking and camping in the woods that would require something different.

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I’m still using 1 Resound in R ear only. I can hear in my R ear only when it’s headphones . Not sure why bec otherwise I can’t hear in R ear. I’m just using the Resound to lessen the impact of tinnitus since it doesn’t help me hear. Weird huh

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Hello Everyone-
I am new to this support group and grateful that I have an outlet for my frustration.
My hearing loss started about 8 years ago with tinnitus. Not sure exactly what the cause was but it may have been swimming in cold water without (DUH!) earplugs. Any way its seems to be getting worse. I have Eargo hearing aids but am still lost in conversations (especially group conversations) even when I'm wearing them. I do have a good life in semi retirement and I would get the most effective top of the line hearing aids but I still can't afford them can't afford them. The worst part is the confusion that comes with being lost in conversations. Sometimes I think I have dementia. Interested in any new affordable technologies that users have found to improve cognitive abilities associated with hearing loss as well as new and more affordable hearing aids, especially those with BlueTooth capabilities. Thank you for 'listening'!

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@jonmoore

Hello Everyone-
I am new to this support group and grateful that I have an outlet for my frustration.
My hearing loss started about 8 years ago with tinnitus. Not sure exactly what the cause was but it may have been swimming in cold water without (DUH!) earplugs. Any way its seems to be getting worse. I have Eargo hearing aids but am still lost in conversations (especially group conversations) even when I'm wearing them. I do have a good life in semi retirement and I would get the most effective top of the line hearing aids but I still can't afford them can't afford them. The worst part is the confusion that comes with being lost in conversations. Sometimes I think I have dementia. Interested in any new affordable technologies that users have found to improve cognitive abilities associated with hearing loss as well as new and more affordable hearing aids, especially those with BlueTooth capabilities. Thank you for 'listening'!

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Your story is quite typical. Frustration in noisy environments, high cost of hearing aid possibilities, feeling left out, and not knowing what caused the hearing loss in the first place.

The over age 60 population commonly experiences age related hearing loss that is often caused by exposure to noise over time and or genetic predisposition to it. As we age it gets more common.

Hearing is priceless. You say you cannot afford top of the line hearing aids. But have you had your hearing tested by a professional doctor of audiology? A provider that has the initials AuD after their name? You should be sure to do that whether you purchase hearing aids from that person or not. You will know more about what you are missing by the audiology exam and the audiogram it produces. Discuss your hearing loss with that professional and ask for a copy of your audiogram. You can take the audiogram elsewhere within a reasonable amount of time and try hearing aids that are far less costly.

Many people on this forum had shared that they have been pleased with hearing aids from Costco or other Big Box Stores. If you go that route, get tested by them and then compare the audiogram you have with the one they get by testing you. They should be the same or very close. Try a pair of hearing aids from that provider and see how they work for you. I know that Costco sells good quality brand name hearing aids. Most are rechargeable if that is important to you. They also allow a 6 month trial period.

It is OK to shop around. When you buy OTC devices you are pretty much the one who is responsible for setting them, learning what they can and cannot do, etc.

There are assistive technologies that go beyond hearing instruments that can be an amazing help in noisy social settings. You need the 'telecoil component' to connect to them. You need someone to explain and demonstrate that for you. Do you know what telecoils are?

Go to http://www.hearingloss.org to see if there is a chapter of The Hearing Loss Assn, of America (HLAA) in your area. Chapters are organized and led by hard of hearing people themselves. It's a great place to learn.

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Hello all! I've made it through several pages of great discussion! I haven't found anything yet that sounds like my situation which, like many, is hard to describe. Quick background: in 2012 I had a case of vertigo (spinning, emergency room, fenergan and meclazine, etc). The spinning went away but I couldn't walk straight. I saw my ENT, who said my right ear was 38% weaker vestibularly (probably not an actual word, but it works) than my left. I had balance therapy to learn how to walk in a straight line again and was fine with only minor balance issues now and then. On December 7th, 2023, I went for a brain MRI because my neurologist thought I might have a vestibular schwannoma due to some increased balance and gait issues, but that was clear. (Turns out I have a subependymoma, but that's another story.) Two days after that MRI, I started hearing a whoosh or hollow sound in my right ear, not really loud but kind of like the background sound of engines and such when flying in an airliner. About 2 days after that started, I started having a strange response to certain sounds. Whenever there are sounds of certain pitches, I hear the sound as being in the room in my left ear as normal, and also in my right ear (with the accompanying whoosh) but also as a sort of hum that seems to be directly inside my right ear. It's not a distinct sound; if someone is speaking, I can hear them say "Hello, how are you?" in the room in both ears, but also as a kind of muffled hum directly in my ear with the same syllables. "hmmm, hmm hmm hmm?" I've seen my ENT, and I have hearing loss in my right ear as well, in the 250Hz and 500Hz frequencies. Interestingly, I find loud lower tones to cause discomfort that I didn't notice before (but the hum thing is really becoming stressful). Other than the hearing loss, though, my ENT couldn't find anything wrong--no physical issues in my outer ear, and the audiologist who tested me didn't find any inner ear issues (at least not of the type that can be found via the 'transmit sound through the bone' part of the test. Have any of you had a similar experience, or do you have any idea what might be going on?

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