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 group.

@unclefreddy

Hopefully I’m the only sucker out there, but if not take note. I see ads for on line or mail order hearing aids and, silly me, I laid out a lot more than I should have and bought a pair and I now have a pair of light weight paperweights. Despite what they say in their ads, there is no way they can be adjusted on line. I learned that the hard way, so caveat emptor….buyer be ware‼️

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My husband has fallen for the 'ads' time and again! I kept begging him. Finally got him to Costco and he got a normal pair. Except he keeps wanting to buy the 'online' still! He has cognitive issues but his online ad buying has been an issue long before then. He believes every TV ad! At least he is having problems ordering things now. I just ignore it when he asks me to do it – tell him I'll get to it 'tomorrow' and change the subject. He has a drawer full of non-working wonder hearing ads – enough to pay for one good set!

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@julieo4

Your HIS may not understand all the technology you mention…unfortunately. We learn a lot more about technology from the people who use it than from the people who sell hearing aids.

I know so many people with cochlear implants, but I too, was hesitant to go that route back in 2005. My only regret is that I didn't do it sooner. It has made a remarkable difference. I returned to work full time 5 days after the surgery. Of course, I couldn't hear much then since the CI had not yet been activated. No pain and fast healing. It was a real game changer for me. PS: The surgery was much easier than I thought it would be. Do you personally know anyone who has had a CI?

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Absolutely true about what you mentioned about technology. I do not know anyone who has a CI.

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@unclefreddy

Hopefully I’m the only sucker out there, but if not take note. I see ads for on line or mail order hearing aids and, silly me, I laid out a lot more than I should have and bought a pair and I now have a pair of light weight paperweights. Despite what they say in their ads, there is no way they can be adjusted on line. I learned that the hard way, so caveat emptor….buyer be ware‼️

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@unclefreddy How the 'powers that be' have allowed companies to advertise 'hearing aids' the way they have is a mystery to many of us. In 2017 legislation was signed by President Trump that would allow the FDA to establish guidelines for 'over the counter' (OTC) hearing aids. This was supposed to establish rules that made sense and were fair to buyers. The rules still have not been published. Then along comes more false advertising about 'hearing aids' that are basically sound amplifiers. Those ads don't call them that though…they call them hearing aids. Some of the ads are very clever and very believable. They tell it like it is to be hard of hearing. It's grossly unfair to people who become hard of hearing as mature adults.

People are shocked when they learn that a pair of legitimate hearing aids may cost them between $3000 and $7000! The fact that they are not covered by most insurers or Medicare adds to the shock for many. We want to hear; we need to hear to communicate! Real hearing aids do help, so people face a dilemma.

Something has to change. The false advertising should be illegal, but for some reason it isn't. I guess it exists for other products too, but this one costs a lot more. It's important to understand that hearing aid technology has changed a great deal in the last decade. Research & Development has a cost. There are options with BlueTooth and other things that help in ways we only dreamed of a few years back. New features add cost to hearing aids. BUT, those features are also available in other audio products that don't cost nearly as much as hearing aids do. Just look at all the audio devices being worn by people with typical hearing. They are considered 'recreational'.

We are seeing changes, not necessarily with the OTC products that are eventually coming, but with retailers that have added audiology services to their businesses. A big one is Costco. Another is Sam's Club. There are others, but those two are most familiar. The products they sell are not OTC devices. They are standard, regular brand, hearing aids that are sold at much more favorable prices, unfortunately. I say unfortunately because a hearing aid, regardless of cost, is only as good as the person who is fitting and programming it. It's a skill, one that we expect clinical audiologists to have after the years they spend getting their doctorate level education.

Those 'big box' retailers are now in competition with them. Most of the people within those 'big box' stores do not have university degrees in audiology. They are hearing instrument specialists who have received basic training in the technology available. They do not have medical training, nor do they have training in counseling. Should your hearing issues be caused by a medical condition that needs treatment, it would not be diagnosed. Should your hearing loss be causing psychosocial issues or issues in the workplace, there would be little support. And, of course, the few who have some kind of insurance coverage from their employers, might not have it in these situations.

A hearing aid that is not programmed well for an individual's hearing loss will not help much. In fact, it will probably turn the individual off on getting quality hearing healthcare. That is unfortunate, because a well fit hearing aid will lead to positive change.

It might be helpful to get tested at a 'big box' store to see what happens. They allow an extended trial period, usually 100 – 180 days. It might be worth a try, especially if your hearing loss is in the mild to moderate range. For those of us with more severe to profound hearing loss, a clinical audiologist is the gold standard in getting help.

Please let your legislators know that it's time for Medicare and other insurers to recognize that hearing loss is worth treating and is treatable. Being shut out of the hearing mainstream affects employment, health and wellbeing. Be a part of the change you want to have happen.

Information on proposed legislation and change can be found at http://www.hearingloss.org The website of the Hearing Loss Association of America, inc. HLAA is a consumer based nonprofit organization that shares information, provides peer support and advocates for people who experience hearing loss.

Now that I've expounded far more than I had intended to…I ask a question. Do you plan to move forward to get hearing help with a well fit, quality hearing aid?

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@billchitwood

My husband has fallen for the 'ads' time and again! I kept begging him. Finally got him to Costco and he got a normal pair. Except he keeps wanting to buy the 'online' still! He has cognitive issues but his online ad buying has been an issue long before then. He believes every TV ad! At least he is having problems ordering things now. I just ignore it when he asks me to do it – tell him I'll get to it 'tomorrow' and change the subject. He has a drawer full of non-working wonder hearing ads – enough to pay for one good set!

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Oh my goodness. Glad he bought a 'normal pair', but sad he is caught up in those ads. I'm guessing a lot of people do that. So much of the advertising is 'gotcha stuff' that doesn't do what they say it does. 🙁

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@annab21

Absolutely true about what you mentioned about technology. I do not know anyone who has a CI.

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I have met so many hard of hearing people, many of them pioneers in the development of advanced technology, through HLAA. I give HLAA credit for 90% of what I've learned about hearing loss, hearing aids, cochlear implants and other assistive technology. Through HLAA, I watched some of the early recipients of cochlear implants. It kept getting better and better. I'm not sure I would have gone that route had I not seen how much this changed their lives by enhancing their ability to communicate fluidly.

If you have an HLAA chapter in your area, do connect with them. THe website for HLAA (Hearing Loss Assn. of America) is http://www.hearingloss.org Currently, many chapters are meeting virtually with meetings open to anyone interested in registering. In Wisconsin we've had some wonderful programs presented by people in California, New York and Washington D.C. It's pretty amazing.

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I am a 69 yo male new to this group. I suffered a sudden hearing loss 10 to 15 years ago and have not done anything about it. I was assessed last week and diagnosed with single-sided deafness. My right ear has normal hearing, but my left hears very little. I am now exploring options to improve my overall hearing. I have tired of always having to position conversations toward my right side…unless I am not interested in the conversation. I am especially interested in the pros and cons of bone-conduction hearing aids and the experience of others with single-sided deafness.

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@tjdegrood

I am a 69 yo male new to this group. I suffered a sudden hearing loss 10 to 15 years ago and have not done anything about it. I was assessed last week and diagnosed with single-sided deafness. My right ear has normal hearing, but my left hears very little. I am now exploring options to improve my overall hearing. I have tired of always having to position conversations toward my right side…unless I am not interested in the conversation. I am especially interested in the pros and cons of bone-conduction hearing aids and the experience of others with single-sided deafness.

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Have you tried a bi-cross hearing aid system? That involves a transmitter on the deaf ear that sends sound to the hearing device on the good ear. Thus, you hear from both sides.

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No, I have not tried anything. I am currently evaluating all my options including CROS and bone conduction. I hope to try the various options before committing to one.

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@tjdegrood

No, I have not tried anything. I am currently evaluating all my options including CROS and bone conduction. I hope to try the various options before committing to one.

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Whatever you are able to try, be sure that you are allowed a trial period that gives you time to try the technology in a variety of places. 30 days is not enough. 60 days is better, especially now when so many options are either limited or closed. Go to a theater, a performing arts center, a meeting of some kind, socialize in noisy places, etc. You will not know if a hearing device helps you unless you give it a chance in places and situations you usually frequent.

Some bone conduction devices like the Cochlear BAHA (Bone Anchored Hearing Aid) require minor surgery, but I think they can be tested externally without the surgery.

It's hard to get started, isn't it?

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Luckily, I am someone who plans down to the smallest detail before making a major decision. So, I hope to enjoy the process. I really appreciate your advice to try aids in numerous situations (e.g., theater, performing arts center, meetings, pubs, etc.). You are right, one cannot know if a hearing device will provide the benefit desired without a thorough trial.

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I am here looking for modern research in the varied causes of hearing loss BECAUSE – although I was diagnosed as not likely to ever have hearing issues, my Mother did. I was her helper till she mastered lipreading and made a new life better than many unimpaired. I learned a great deal as a girl about hearing loss from many perspectives. I never had an issue and always performed in speech song and musical instruments. Then an accident at hotflashes time with bone and joint injuries and tons of related trauma to my life emotionally found me "missing things" overnight. I worked in public and speak and hear were my gifts and key to my work, as with most of us. I lost clients, friends and even some family members, because my hearing would "short-circuit" perceptions flashing in and out. I told my doctors that I never had hearing issues and because I learned a lot about the details of hearing loss, I strongly believed my experience may not be normal deafness, but at least part traumatic/psychosomatic. My doctors were NOT helpful – "Get an aid" so I did. I was injured and in chronic pain and not able to give them an argument1 I was also NOT interested in opiates for it, so I treated me with non-pharma therapies and did well.

My art got to the White House anyway, and I was finally able to get some of the orthopedic fixes done to end the pain….MIRACLE! One day I turned on my tv and reached for the headset that lets me hear well with captions etc….and I heard WITHOUT the headset or any hearing aid!

"I KNEW IT!"
I had become resigned to being disrespected to add to my suffering and in that moment, I saw that would end, too.

"I KNEW IT!" My hunch was right – about my sudden hearing loss having a fixable cause – at least in part. So thrilling to be right about something after 55! ^_^

So when I won the breakthrough, I came here, after some searching.
I wanted doctors for hearing issues, and NOT hearing aid salesmen.

From the years with Mother, I leaned that LOTS of things can cause hearing loss and I am older and probably do need the aids I keep on hand for when the audio on a thing is too low or unclear.

But I am healed in most ways and NOW I will get me tested and some further health fixes done to optimize my natural hearing. And then I will be ready to spend significant cash on whatever I need technically to let me enjoy my good life fully.

Do not get me wrong – I know I will need some aids perhaps, and so I must be informed and think and plan and discern and then try and buy.

But I do want the science initiatives – testing for causes etc. first.
I am continuing to get the repairs to the orthopedics done and other health issue to money and emotions fixed. And I am ready to take counseling on my traumas too.

For the first time 20 years I am more or less pain free and mobile without needing to start a new country over it. And it has made that difference. I am able to listen, not struggling with my own pain so much.

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Hello – I am following this group to learn how to help my 85 year old mother who lost the hearing in her right ear 3 years ago and then in her left 2 months ago. She cannot hear anything and has been diagnosed with sensorineural hearing loss (SNHL). Along with the hearing loss, she is experiencing pain and dizziness. She has seen two ENTs, a Neuro otologist, Neurologist, had multiple CT scans and MRIs, had steroid injections in her ear, done several rounds of oral steroids, done physical therapy … and still no understanding of what caused the hearing loss or how to alleviate the pain and dizziness.

She is feeling isolated, frustrated, and agitated … all understandable! It is time we figure out how to help her deal with what is happening and start to live each day the best she can, instead of waiting for an answer to "why" and/or a cure.

Any suggestions for services and support for those dealing with sudden hearing loss would be very much appreciated!

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