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.

@kmseay

I have the same concern you have, Bob. I have been using Widex Evoke hearing aids for nearly four years. They were recommended by two different audiologists, who both seemed to have some sort of business agreement with Widex. I still see the audiologist from whom I purchased the hearing aids, and she still insists that Widex will be the best choice for me in the future when newer models are released. My hearing has deteriorated in the past four years since I’ve been wearing the hearing aids, and I find myself frustrated in many situations, particularly noisy backgrounds, as I simply cannot function as I used to. I no longer attend concerts and other live performances or go to many large gatherings because of my inability to hear and the fatigue that results from trying to listen. I have almost completely lost the ability to enjoy music, something that was always very important in my life, both as a listener and a singer/player.

Like so many other things in our hypercapitalist era, the dedicated, effective treatment of hearing loss is, I’m afraid, being sacrificed on the altar of greater and greater profits. It is difficult to know how to find providers and practitioners who are genuinely interested in doing the best thing for their patients rather than seeing to their own profitability first. Audiologists, I’m afraid, are no exception.

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Re: audiologists putting profit first: Costco has its plusses and minusses, but its people are not on commision, so you stand a better chance of them putting your needs first,

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My understanding is that there are only limited choices in hearing aids at Costco, despite good pricing for what they do carry. I also believe that most of their hearing staff are not audiologists but hearing technicians, and I would like someone who has a real depth of knowledge and experience about hearing loss, tinnitus, and what all the possibilities are for correcting or improving all my hearing issues.

It would be nice if there were no downsides to dealing with Costco for hearing needs. My husband gets his hearing aids there, but my problems are more profound and complicated than his, at least currently.

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@kmseay

My understanding is that there are only limited choices in hearing aids at Costco, despite good pricing for what they do carry. I also believe that most of their hearing staff are not audiologists but hearing technicians, and I would like someone who has a real depth of knowledge and experience about hearing loss, tinnitus, and what all the possibilities are for correcting or improving all my hearing issues.

It would be nice if there were no downsides to dealing with Costco for hearing needs. My husband gets his hearing aids there, but my problems are more profound and complicated than his, at least currently.

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I do not promote Costco, but know they have some policies that make that option worth considering for some people. The big one is their lengthy trial period. They allow 6 months trial where most other providers allow 60 days at the most. Many, only 30. Anyone who is fitted with hearing aids no matter who fits them, is responsible for trying them in every possible situation. Make a list of things you like to do, want to do, etc. and do them. If the hearing aids don't help in those situations, it's either a poor fit, or the need for a more sophisticated product. (If hearing instruments have been tried and found to be not helpful, it may be because your hearing loss is too severe. In that instance, it might be wise to look into the cochlear implant option.)

Hearing aids are sold like consumer products. The fact they are rarely insured is huge. It's up to the buyer to decide whether they are helpful. Appropriate testing by an audiologist should provide information about the effectiveness of the product if it's done right.

It's important to understand that different brands and models offer different options. People who sell hearing aids don't always tell their 'customers' about those options. It takes time. Time is $. In that regard, it's very important to use your time to learn as much as you can about hearing loss, hearing instruments, assistive technology that goes beyond them, and other options.

This forum is very helpful. It's also very beneficial to meet other people with hearing loss in person who are open to sharing their experiences with products and providers. HLAA chapters are very helpful in that regard. If there's a chapter in your area, contact them and ask questions. Attend their meetings. These chapters are started and formed by people who have hearing loss. If there isn't a chapter in your area, and you are a person who is willing to get involved, consider starting one. HLAA is consumer based, so what you learn through HLAA Is coming from people who have the same concerns you have. http://www.hearingloss.org

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@kmseay

I have the same concern you have, Bob. I have been using Widex Evoke hearing aids for nearly four years. They were recommended by two different audiologists, who both seemed to have some sort of business agreement with Widex. I still see the audiologist from whom I purchased the hearing aids, and she still insists that Widex will be the best choice for me in the future when newer models are released. My hearing has deteriorated in the past four years since I’ve been wearing the hearing aids, and I find myself frustrated in many situations, particularly noisy backgrounds, as I simply cannot function as I used to. I no longer attend concerts and other live performances or go to many large gatherings because of my inability to hear and the fatigue that results from trying to listen. I have almost completely lost the ability to enjoy music, something that was always very important in my life, both as a listener and a singer/player.

Like so many other things in our hypercapitalist era, the dedicated, effective treatment of hearing loss is, I’m afraid, being sacrificed on the altar of greater and greater profits. It is difficult to know how to find providers and practitioners who are genuinely interested in doing the best thing for their patients rather than seeing to their own profitability first. Audiologists, I’m afraid, are no exception.

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@revbobcoulson and @kmseay

The candidacy for cochlear implantation has been changed a great deal in the last year. CIs are no longer available only for profoundly hard of hearing people but can be an option for people with less profound hearing loss. The time to consider a cochlear implant is when hearing aids are no longer providing the help a person needs and expects. I use both a CI and a hearing aid. They work very well together. Without the CI, I hear virtually nothing. The CI has been a miracle for me.

Because of my involvement in HLAA (www.hearingloss.org), I have met many other people who have chosen to have cochlear implants. Lives change dramatically when someone is able to remain in the hearing mainstream comfortably with this remarkable technology. It's important to know that cochlear implants are covered by insurance and by Medicare.

If hearing aids are not working well for you, ask your provider about cochlear implants. If they discourage you, ask why. I hate to say this, but there may be a few out there who don't like the possibility of losing a hearing aid customer.

It may be worth the time and trip to schedule an appointment and testing at a cochlear implant facility to see if this is an option for you.

Aside: My other thought about your hearing aids no longer doing all you expect them to, is wondering if your audiologists have counseled you on the assistive technology that can work with them. Hearing assistive technology is way more than BlueTooth. Telecoils, which are usually in those costly hearing aids, but sometimes are not activated, can connect you to assistive technology in venues like theaters, performing arts centers, worship centers, etc. If you are not using that feature, you are getting 1/2 the value of your hearing instrument in my humble opinion. NOTE: BlueTooth and Tcoils can connect to streamers that can be used in noisy social settings.

Do you use hearing assistive technology that goes beyond your hearing instruments?

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@julieo4

@revbobcoulson and @kmseay

The candidacy for cochlear implantation has been changed a great deal in the last year. CIs are no longer available only for profoundly hard of hearing people but can be an option for people with less profound hearing loss. The time to consider a cochlear implant is when hearing aids are no longer providing the help a person needs and expects. I use both a CI and a hearing aid. They work very well together. Without the CI, I hear virtually nothing. The CI has been a miracle for me.

Because of my involvement in HLAA (www.hearingloss.org), I have met many other people who have chosen to have cochlear implants. Lives change dramatically when someone is able to remain in the hearing mainstream comfortably with this remarkable technology. It's important to know that cochlear implants are covered by insurance and by Medicare.

If hearing aids are not working well for you, ask your provider about cochlear implants. If they discourage you, ask why. I hate to say this, but there may be a few out there who don't like the possibility of losing a hearing aid customer.

It may be worth the time and trip to schedule an appointment and testing at a cochlear implant facility to see if this is an option for you.

Aside: My other thought about your hearing aids no longer doing all you expect them to, is wondering if your audiologists have counseled you on the assistive technology that can work with them. Hearing assistive technology is way more than BlueTooth. Telecoils, which are usually in those costly hearing aids, but sometimes are not activated, can connect you to assistive technology in venues like theaters, performing arts centers, worship centers, etc. If you are not using that feature, you are getting 1/2 the value of your hearing instrument in my humble opinion. NOTE: BlueTooth and Tcoils can connect to streamers that can be used in noisy social settings.

Do you use hearing assistive technology that goes beyond your hearing instruments?

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The only assistive device my audiologist has offered was a TV transmitter made by Widex. I purchased (more than $300), brought it home and tried it, and in order for my husband to also be able to hear the TV also, we needed a splitter to attach the device to our sound bar, which we were told by several stores we went to try to buy it, did not exist. I returned the device.

I do have an MT setting on my hearing aids, which is supposed to work with technology in theaters, etc, but I have found very few places where that technology is available. It also seems very dependent on presenters, etc. knowing how to use mikes to optimize the sound quality on such systems.

I think I need to find a new audiologist with either wider knowledge of hearing aid brands and their strengths or a greater willingness to explore all brands and technologies with me rather than promoting her preferred brand. And then I need to take advantage of trial periods to find a brand that works best for my hearing loss and tinnitus, plus the assistive devices that will help me most.

One of the biggest practical life lessons I have learned in the past 20+ years is that we Americans as patients of health care providers of all kinds MUST learn to be our own advocates. Health care, including hearing care, has now become so complex, fragmented, and is SO heavily profit-driven that patients must insist on being listened to and seen rather than treated as just the next problem in the door. Each provider seems to focus only on the problem s/he is trying to fix, without regard for the whole person and what the solutions they propose may be doing to harm some other part of the patient (e.g., MRIs damaging hearing and exacerbating tinnitus - most doctors aren’t even aware this can happen). They also fail to take into consideration differences in the way people live their lives and, thus, differing needs from person to person.

I am very grateful to this forum for making me aware of the fact that I need to educate myself and take the time to seek out providers who listen, who are equipped to know the full range of possible solutions, and who are not so wedded to personal profit that they cannot recognize and offer what is best for the patient, and then to advocate for myself in order to take advantage of what is best for me and my own situation.

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@julieo4

I do not promote Costco, but know they have some policies that make that option worth considering for some people. The big one is their lengthy trial period. They allow 6 months trial where most other providers allow 60 days at the most. Many, only 30. Anyone who is fitted with hearing aids no matter who fits them, is responsible for trying them in every possible situation. Make a list of things you like to do, want to do, etc. and do them. If the hearing aids don't help in those situations, it's either a poor fit, or the need for a more sophisticated product. (If hearing instruments have been tried and found to be not helpful, it may be because your hearing loss is too severe. In that instance, it might be wise to look into the cochlear implant option.)

Hearing aids are sold like consumer products. The fact they are rarely insured is huge. It's up to the buyer to decide whether they are helpful. Appropriate testing by an audiologist should provide information about the effectiveness of the product if it's done right.

It's important to understand that different brands and models offer different options. People who sell hearing aids don't always tell their 'customers' about those options. It takes time. Time is $. In that regard, it's very important to use your time to learn as much as you can about hearing loss, hearing instruments, assistive technology that goes beyond them, and other options.

This forum is very helpful. It's also very beneficial to meet other people with hearing loss in person who are open to sharing their experiences with products and providers. HLAA chapters are very helpful in that regard. If there's a chapter in your area, contact them and ask questions. Attend their meetings. These chapters are started and formed by people who have hearing loss. If there isn't a chapter in your area, and you are a person who is willing to get involved, consider starting one. HLAA is consumer based, so what you learn through HLAA Is coming from people who have the same concerns you have. http://www.hearingloss.org

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Thank you, Julie, Volunteer Mentor. The Hearing Loss Association of America for people who speak and listen but have hearing loss is the most helpful organization to join and or become a member.
Hermine Willey
cohear@aol.com

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@hedy

Thank you, Julie, Volunteer Mentor. The Hearing Loss Association of America for people who speak and listen but have hearing loss is the most helpful organization to join and or become a member.
Hermine Willey
cohear@aol.com

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Thank you Hermine! HLAA rocks! I often wonder where I'd be today had I not learned about this organization back in 1983. So much of what HLAA has achieved is taken for granted by so many today. Still, there's a ways to go!

Do you plan to attend the national HLAA convention in New Orleans in June?

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@julieo4

I do not promote Costco, but know they have some policies that make that option worth considering for some people. The big one is their lengthy trial period. They allow 6 months trial where most other providers allow 60 days at the most. Many, only 30. Anyone who is fitted with hearing aids no matter who fits them, is responsible for trying them in every possible situation. Make a list of things you like to do, want to do, etc. and do them. If the hearing aids don't help in those situations, it's either a poor fit, or the need for a more sophisticated product. (If hearing instruments have been tried and found to be not helpful, it may be because your hearing loss is too severe. In that instance, it might be wise to look into the cochlear implant option.)

Hearing aids are sold like consumer products. The fact they are rarely insured is huge. It's up to the buyer to decide whether they are helpful. Appropriate testing by an audiologist should provide information about the effectiveness of the product if it's done right.

It's important to understand that different brands and models offer different options. People who sell hearing aids don't always tell their 'customers' about those options. It takes time. Time is $. In that regard, it's very important to use your time to learn as much as you can about hearing loss, hearing instruments, assistive technology that goes beyond them, and other options.

This forum is very helpful. It's also very beneficial to meet other people with hearing loss in person who are open to sharing their experiences with products and providers. HLAA chapters are very helpful in that regard. If there's a chapter in your area, contact them and ask questions. Attend their meetings. These chapters are started and formed by people who have hearing loss. If there isn't a chapter in your area, and you are a person who is willing to get involved, consider starting one. HLAA is consumer based, so what you learn through HLAA Is coming from people who have the same concerns you have. http://www.hearingloss.org

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My gardners grandson was very hard of hearing, so bad his grades were failing. I tried to help the grandson, after many failed attempts the grandson went to Walmart, he bought over the counter amplifiers. Those are small hearing aids that just amplifies sound.
For him they worked very well. He’s now doing better.
He also went to an ear doctor, the doctor told him some medicines cause hearing loss.
Do not know if he was on any Rx.

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Hello this is rob a new member to the hearing loss support group. I am 75 years old and have been using hearing aids for about 4 years, Currently Starkey evolve 2400Series, On a trial basis, And I am reluctant to spend the $8000 for these. Considering cocular implants. Has anybody had experience with the company Advanced Bionics?
Thank you

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Hello all. I'm Lee from PA. I'm 71 y/o and have been dealing with significant hearing loss since 1979 when I was 27 years old. I've been bilaterally aided since 1982. The primary cause of my loss is bilateral Meniere's Disease which I was diagnosed with in 1982, although there may also have been some antibiotic ototoxicity from childhood that is additive to my hearing problems. My current loss is approximately 70-80 db across most of the speech frequencies. Living in the hearing world isn't always easy, but I do OK. I'm just trying to make it to the finish line with some usable hearing remaining..:)

Nice to "meet" everyone. I hope to learn as well as be a resource for others if I can.

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