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.

Profile picture for h2h @h2h

@daveshaw It is too bad that there is such a negative stigma, embarrassment, whatever one might have, for admitting they have hearing loss and then wearing hearing aids that are "obvious" behind the ear ones. Even the industry promotes "low profile", "in the ear, hidden, nearly invisible...." reinforcing this negative thinking. These smaller HA won't have a telecoil. I want a hearing aid that still has a telecoil in it and eventually the new Auracast bluetooth LE. But several things have to also have this Auracast in them to work seamlessly with my hearing aids. Unfortunately, several HA maufacturers are starting to not make telecoils available with their HA and instead just putting in Auracast, which to me is very unsupportive of those who still want and need telecoils. Of course one likely has to ask their AuD to put in telecoils as it seems to be a rare AuD that automatically includes them or even tells their customers about them, frustrating. There are still thousands of places with hearing loops that won't be going away and it's still going to take years for Auracast to get installed in places. And when installed any current system should stay in place as well. Auracast will be wonderful when fully available and integrated, but it is still years away. The final criteria for it isn't coming out until Dec 2027 even.

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@h2h If you have severe to profound hearing loss you need to put your vanity in the rear view mirror and get the most powerful hearing aids on the market.
In my humble opinion Phonak with their I90 Sphere Ultra is far and away the best hearing aid on the market. Are they perfect? The answer is no but they are far superior to anything on the market today.
I would love to hear from others out there with severe to profound hearing loss.

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IMO, no matter what level of hearing loss one has, they need to not be embarassed in telling people and becoming an advocate for better service, such as an assistive listening device at a bank tellers window, or govt office counters, doctor offices counters and in exam rooms, hospitals, etc...

I'd be interested in trying out the aids you have, but I know it varies from person to person how well a certain HA might work. For some, certains one's work great, for others not as well due to level of hearing loss, type of hearing loss, and other factors.

Fortunately I'm only at the moderate to severe level of hearing loss, so far.

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Profile picture for dworkenlaw1 @dworkenlaw1

I am new. Have SSHL. Can you tell me about the sensation of having my hearing loss ear feel like it is totally stuffed with cotton? My friend with hearing loss does not have that. Thoughts?

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@dworkenlaw1 Have you had your ears checked for wax? I went to the ENT because I was having trouble hearing and my left ear felt clogged. Dr. removed "an impressive amount," of wax from my ears and it did seem to help.

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Profile picture for daveshaw @daveshaw

Obviously I put hearing well before vanity. My Phonak I90 Sphere Ultra hearing aids are bigger than most or all hearing aids but I can actually hear in crowded venues. I am sure Phonak will work on making them smaller but until then they are the best thing on the market.
Sure they are more noticeable but it sure beats saying what did you say all the time.
Try them. They have telecoil and can add Auracast when it is widely available.
I got mine for $4,200. Including a charger, custom ear moulds and a device to stream sound directly from my TV to my ears.
I have a seven year old granddaughter that has some hearing loss and she has no problem with wearing hearing aids.
People just have to own the fact they have hearing loss.
Good luck to you.

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@daveshaw I am surprised you were able to buy Phonak I90 Sphere Ultra for $4,200. My guess would have been $7,000, at least!

If I may ask, did you purchase them from a private audiology clinic? Here in the Puget Sound area in July of 2023 the price of Oticon Real 3 hearing aids was $5,000.00. I paid half, my health insurance paid half. It seems from what I have read, the Phonak I90 Sphere Ultra are now widely considered the best on the world market.

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Profile picture for h2h @h2h

IMO, no matter what level of hearing loss one has, they need to not be embarassed in telling people and becoming an advocate for better service, such as an assistive listening device at a bank tellers window, or govt office counters, doctor offices counters and in exam rooms, hospitals, etc...

I'd be interested in trying out the aids you have, but I know it varies from person to person how well a certain HA might work. For some, certains one's work great, for others not as well due to level of hearing loss, type of hearing loss, and other factors.

Fortunately I'm only at the moderate to severe level of hearing loss, so far.

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@h2h Thank you for pointing out that different brands of hearing aids are very likely to work differently for each hard of hearing person. There is no "One best brand".

I'm a unique example of that as I'm bimodal. I have a Cochlear Americas cochlear implant. I use a hearing aid in the other ear. Cochlear Americas partnered with ReSound hearing aids for compatibility. That wasn't the case when I was implanted in 2025. They all worked together, but that was before BT streaming.

I have tried the compatible brand with little success. Yes, it helps with streaming, but in general use it doesn't. I am still using the Widex brand of hearing aid. I will try again when the time is right, but this is my reality.

It's interesting that I test at 100% understanding with both devices in sentence recognition. That goes down slightly with background noise. With only the CI, it's at 93%. With just the hearing aid it's way down like 30%. My brain has adjusted to the products I use, and I need both devices to get the most.

We are all different. It's obvious that the human brain is capable of making adjustments. I wonder how quickly I might adjust if I decided to use the compatible brand regardless.

I feel blessed to have access to the remarkable technology that's available to use now. I love telecoils! I look forward to Auracast! It's important to pay attention to all that is in development. It was soooo different when I was diagnosed with progressive sensorineural hearing loss in the 1960s!!

Julieo4

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Profile picture for cleveland26 @cleveland26

@daveshaw I am surprised you were able to buy Phonak I90 Sphere Ultra for $4,200. My guess would have been $7,000, at least!

If I may ask, did you purchase them from a private audiology clinic? Here in the Puget Sound area in July of 2023 the price of Oticon Real 3 hearing aids was $5,000.00. I paid half, my health insurance paid half. It seems from what I have read, the Phonak I90 Sphere Ultra are now widely considered the best on the world market.

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I bought them from a company called Audeo Nova. Check them out. They gave me the charger, custom moulds and the Roger Mike that hooks up to my TV all for that price.
Let me know what you think of the Oticon Real 3 hearing aids. My problem was background noise in crowded restaurants and other venues.
I don’t know how severe your hearing loss is but I am upgrading to a more powerful receiver. I would also recommend you look in to custom molds instead of domes. Just a suggestion. They might help them work better.
Good luck.

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Profile picture for daveshaw @daveshaw

I bought them from a company called Audeo Nova. Check them out. They gave me the charger, custom moulds and the Roger Mike that hooks up to my TV all for that price.
Let me know what you think of the Oticon Real 3 hearing aids. My problem was background noise in crowded restaurants and other venues.
I don’t know how severe your hearing loss is but I am upgrading to a more powerful receiver. I would also recommend you look in to custom molds instead of domes. Just a suggestion. They might help them work better.
Good luck.

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@daveshaw Thanks for the reply. There is an Audeo Nova clinic in Tacoma, WA, which I will definitely check out when I'm ready to buy a new set of HA.

My insurance kicks in $2,500 every fifth year. I bought my current ones two and a half years ago. The Oticon Real 3 HA are good - EXCEPT in noisy environments in which they are fairly useless. My hearing loss is moderate according to the Apple hearing test I took a few days ago.

As a stop gap, part timer, which I bought to help extend the life of the Oticons, I just two days ago purchased Apple Air Pod Pro 3's which have a hearing aid function. For $199.00, I am impressed.

How do you like the Phonak?

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Profile picture for JK @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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@contentandwell I have good news for you. I struggled with Signia IX hearing aids for years because they were so affordable on my Humana Gold Plus Medicare plan.
They only cost me $2,000 for both of them.
I kept on reading about Phonak I90 Sphere Ultra and finally I tried them. They cost me $4,200 for both of them and I can honestly say they are light years ahead of Oticon along with all the others for noisy environments.
They are truly worth the money and everyone around me has noticed the difference.
Give them a try and you won’t be disappointed. Just make sure you have them fitted by an Audiologist. There is a reason they go to school for four years.
Let me know what you think.

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Not much to say. I'm on my second set of hearing aids with the Audicus Spirits.
I will have had these for 4 years this fall, after which my Anthem Advantage insurance will pay $1200 toward new aids.
I'm researching various brands and am interested in all the new AI features such as noise cancelling, DNN, etc., and my aids do not have any high tech features, say to say.

I can't use Costco aids, because the nearest one is 100 miles away. (I live in SW Virginia) I have mild to moderate hearing loss, and since I'm a retiree, I don't often go out to noisy places, but I still go to symphony, restaurants, and small meeting rooms. Those are the places I have the most trouble.

I look forward to learning a lot from the experiences of those on this forum.

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Profile picture for comeagain @comeagain

Not much to say. I'm on my second set of hearing aids with the Audicus Spirits.
I will have had these for 4 years this fall, after which my Anthem Advantage insurance will pay $1200 toward new aids.
I'm researching various brands and am interested in all the new AI features such as noise cancelling, DNN, etc., and my aids do not have any high tech features, say to say.

I can't use Costco aids, because the nearest one is 100 miles away. (I live in SW Virginia) I have mild to moderate hearing loss, and since I'm a retiree, I don't often go out to noisy places, but I still go to symphony, restaurants, and small meeting rooms. Those are the places I have the most trouble.

I look forward to learning a lot from the experiences of those on this forum.

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@comeagain I hope you look in to the new Phonak I90 Sphere Ultra hearing aids. I have severe to profound hearing loss and they have vastly improved my hearing aid experience. You sound like you have far better hearing than I do and with the right board certified audiologist you can improve your hearing today.
I don’t believe you will find Phonak hearing aids at Costco and many times have to work with “ hearing specialists “ instead of licensed audiologists.
Good luck to you.

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