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.

@catladyde9

Recent experiences this week have shown my Rexton aids can no longer serve all my essential hearing needs -- especially in noisy environments - restuarants especially, group settings, outdoor gatherings, etc. (TV and radio have never been more than okay with the aids, closed captions is always used. Movie theaters are awful and are usually avoided). Voice clarity has lessened considerably - what remains is very poor. Would appreciate receiving advice and suggestions for best sources for researching alternative aids, what to look for services offered and the bhind the ear hearing aids, the warranties, repairs , cleaning, life expectancy of aids, etc. After a disastrous appointment with an audiologist who flatly refused to provide behind the ear aids I went to Costco-Issaquah WA (Costco was the only alternative she gave). After a full hearing test/evaluation, Rexton was the one the Costco specialist advised would meet my needs three years ago.

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Two references: I love my Sound Advice Hearing Center which does testing and sells all the top brands plus devices such as TV adaptor. I have also joined HLAA which has local clubs around the country and they sponsor local hearing technology expositions. I wen to last one here in Tampa Bay area and it was great to see all the vendors as well as idologist proving information and demonstrating devices. It was also great to attend sessions and meet others with full spectrum of hearing loss issues and learn about how they are coping.

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@catladyde9

Recent experiences this week have shown my Rexton aids can no longer serve all my essential hearing needs -- especially in noisy environments - restuarants especially, group settings, outdoor gatherings, etc. (TV and radio have never been more than okay with the aids, closed captions is always used. Movie theaters are awful and are usually avoided). Voice clarity has lessened considerably - what remains is very poor. Would appreciate receiving advice and suggestions for best sources for researching alternative aids, what to look for services offered and the bhind the ear hearing aids, the warranties, repairs , cleaning, life expectancy of aids, etc. After a disastrous appointment with an audiologist who flatly refused to provide behind the ear aids I went to Costco-Issaquah WA (Costco was the only alternative she gave). After a full hearing test/evaluation, Rexton was the one the Costco specialist advised would meet my needs three years ago.

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Hi,
There are terrible audiologists and hearing aid techs out there as there are great ones. Can’t imagine any Audi who wouldn’t let you at least try BTEs (Behind the ears) . I have been wearing BTEs for too many years to count. My last ten years have been with Phonak BTEs. My current ones are very powerful and use a 675 battery which lasts almost a month.

BTEs generally have less repair problems since those delicate electronics are behind , not in the ear. My Phonaks accommodate many types of programs, like speech in noise, wind, music etc. I narrowed it down to 3 since all the bells and whistles don’t work or are not necessary. I have learned how to retube them myself, my Audi gave me extra tubing and I bought the tool online. I also store them every night in the Dry and Store dehumidifier.

My Audi let me trial 5 pairs of aids about 6 months ago, Starkey and Widex were 2 good brands and it was a tossup between Widex and Phonak. She’s a great patient programmer. There was no upfront charge for the trials. She also let me trial the accessory that you can buy for Phonak called the Icom which I did not like.

Most aids come with a 2-4 year warranty. Any adjustments by an Audi are included in the price, no matter how many. It helps to write down exactly what you are experiencing and describe the sounds you are hearing...tinny, shrill for example before you go back for adjustments ( I had at least 6 or 7 this last time). People with the exact same audiograms will experience things differently and only you know what you need. Don’t get swayed by what the Audi thinks and don’t be rushed into anything. You’ll know if an Audi is trying to rush you or is impatient so run from them.

Noisy situations will always be difficult. You can go to movies that are captioned but you will probably have to wear the caption glasses which can get heavy. Do you have a Hearing loss club in your area? I belong to such a club and if we get 10 or more people at one of the theaters that has captions, we get the whole theater to ourselves with on screen captions.

I rely on captions for TV,. I have a landline captioned phone and use Innocaption on my cell phone. There are free apps in the play store that you can download and try for using in noisey places.

Goggle around on the internet and you’ll be surprised at what you find....you may come across an HHLA chapter in your area or have a Deaf and Hard of Hearing agency nearby. Search for listening strategies and coping mechanisms , deaf clubs, captioned theaters (try Caption fish)
and be upfront and advocate for yourself. Above all, find a good Audi or hearing aid tech and see if you can get more than a 30 day trial for new aids.
The hearing aid company wants you to buy them so they will be accommodating.

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@contentandwell

@2mnycars Hearing aids are better than nothing but they sure are not like natural hearing.
JK

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@jk I hope that we all extend warnings to others--protect your hearing. Mine was due to exposure to noise, and I need to be careful in my work environment that I take precautions. My annual hearing test regularly shows 5 dB change. Thanks for your note. It's too late to help me.

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@catladyde9

Recent experiences this week have shown my Rexton aids can no longer serve all my essential hearing needs -- especially in noisy environments - restuarants especially, group settings, outdoor gatherings, etc. (TV and radio have never been more than okay with the aids, closed captions is always used. Movie theaters are awful and are usually avoided). Voice clarity has lessened considerably - what remains is very poor. Would appreciate receiving advice and suggestions for best sources for researching alternative aids, what to look for services offered and the bhind the ear hearing aids, the warranties, repairs , cleaning, life expectancy of aids, etc. After a disastrous appointment with an audiologist who flatly refused to provide behind the ear aids I went to Costco-Issaquah WA (Costco was the only alternative she gave). After a full hearing test/evaluation, Rexton was the one the Costco specialist advised would meet my needs three years ago.

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@catladyde9 Hi catlady, and welcome to Connect. I understand your problems totally, I have the same. When the clarity issues got bad my audiologist switched me from the Phonaks I had, which had been great prior to the clarity issues, to Oticon Opn1 hearing aids. The Opn was at the time -- about two years ago -- the best for clarity. The other manufacturers may have caught up by now. They had a different way of handling the transmission of sound. They are a definite improvement, before I could never hear in a situation with a speaker, as at church, but now I can usually.
The Opn is not perfect, I still have problems in noisy situations, but they are better than what I had. I would find a different audiologist. I don't understand why she did not want to prescribe BHE aids. My audiologist has said for a number of years now that my loss is too severe to use anything except behind the ear aids.
Are Rexton hearing aids available from regular audiologists or just through Costco? I have dealt with two different audiologists, one local here in NH, and one in NYC, and never heard of that brand.
I hope you find something that meets your needs. I am interested in any information that you find about this, since I have such a similar problem. They are coming up with new technology all of the time but the cost of hearing aids is so high that a person cannot just switch easily, unless they have a surplus of money. My daughter who also wears hearing aids but for a totally different type of loss, thinks if there is something new and better that it would be worth the money to get it. She is extremely happy with her new hearing aids, ReSounds, but she does not have the clarity issues that I have.

@johntm Hi John, and welcome to Connect. I think many of us share the same frustrations that you have, I certainly do. My aids are Bluetooth so my phone does stream to my aids, which is hugely helpful. I don't even bother to answer our landline phone now. I have Oticon Opn hearing aids and also purchased the "Connect Clip" which allows me to put a little microphone on someone who is speaking so they can be streamed to my aids.
JK

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I understand that this is a place to meet others who have experience with hearing loss. However, I live in Ontario Canada. Is there some way to set up a regional forum so I may learn about local solutions? I'm on my 3 rd set of hearing aids over the last 15 or so years. First 10 years was awful Difference was finding an extraordinary audiologist. Unfortunately she sold her business 1 year after she supplied me with my second set of hearing aids. I'm now on my 3rd pair of hearing aids. I'm finally happy with the way these hearing aids are performing after insisting on some basic changes in the way they are setup.

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@2mnycars

I understand that this is a place to meet others who have experience with hearing loss. However, I live in Ontario Canada. Is there some way to set up a regional forum so I may learn about local solutions? I'm on my 3 rd set of hearing aids over the last 15 or so years. First 10 years was awful Difference was finding an extraordinary audiologist. Unfortunately she sold her business 1 year after she supplied me with my second set of hearing aids. I'm now on my 3rd pair of hearing aids. I'm finally happy with the way these hearing aids are performing after insisting on some basic changes in the way they are setup.

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I really want to focus on learning more about solutions for hearing loss, so that I may get the most out of the equipment supplied to me.

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@contentandwell

@catladyde9 Hi catlady, and welcome to Connect. I understand your problems totally, I have the same. When the clarity issues got bad my audiologist switched me from the Phonaks I had, which had been great prior to the clarity issues, to Oticon Opn1 hearing aids. The Opn was at the time -- about two years ago -- the best for clarity. The other manufacturers may have caught up by now. They had a different way of handling the transmission of sound. They are a definite improvement, before I could never hear in a situation with a speaker, as at church, but now I can usually.
The Opn is not perfect, I still have problems in noisy situations, but they are better than what I had. I would find a different audiologist. I don't understand why she did not want to prescribe BHE aids. My audiologist has said for a number of years now that my loss is too severe to use anything except behind the ear aids.
Are Rexton hearing aids available from regular audiologists or just through Costco? I have dealt with two different audiologists, one local here in NH, and one in NYC, and never heard of that brand.
I hope you find something that meets your needs. I am interested in any information that you find about this, since I have such a similar problem. They are coming up with new technology all of the time but the cost of hearing aids is so high that a person cannot just switch easily, unless they have a surplus of money. My daughter who also wears hearing aids but for a totally different type of loss, thinks if there is something new and better that it would be worth the money to get it. She is extremely happy with her new hearing aids, ReSounds, but she does not have the clarity issues that I have.

@johntm Hi John, and welcome to Connect. I think many of us share the same frustrations that you have, I certainly do. My aids are Bluetooth so my phone does stream to my aids, which is hugely helpful. I don't even bother to answer our landline phone now. I have Oticon Opn hearing aids and also purchased the "Connect Clip" which allows me to put a little microphone on someone who is speaking so they can be streamed to my aids.
JK

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@contentandwell hi JK -- thank replying so quickly. Rexton is one of several HA brands that Costco sells. Will be Costco
later today to replace a new rechargeable battery that suddenly died and will book an appointment with the HA specialist
to discuss possible last attempt adjustments to my Rextons. Currently trying to research audiologists close to home (driving
distances is no longer feasible) who will prescribe BHE. Reseaching BHE HAs online is a new experience for me (no one
I know has any hearing loss). Will be happy to share what I discover (There are no HLLA chapters in Washington State --
the nearest is in Oregon).
DE

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@catladyde9

@contentandwell hi JK -- thank replying so quickly. Rexton is one of several HA brands that Costco sells. Will be Costco
later today to replace a new rechargeable battery that suddenly died and will book an appointment with the HA specialist
to discuss possible last attempt adjustments to my Rextons. Currently trying to research audiologists close to home (driving
distances is no longer feasible) who will prescribe BHE. Reseaching BHE HAs online is a new experience for me (no one
I know has any hearing loss). Will be happy to share what I discover (There are no HLLA chapters in Washington State --
the nearest is in Oregon).
DE

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@catladyde9 There are no HLLA chapters here in NH either, the closest is an hour away in MA. Healthgrades.com does include audiologists in their ratings, so you might want to start there. I find it's not a reliable source unless there are quite a few reviews of the health care professional, but if you don't know anyone else who has a hearing loss you might need to try something like that. There may be other sites that review audiologists also. Or, you can look up audiologists in your area and check them out for their education and see if the business/doctor they work for has reviews of the professionals. A few do. You also could ask your PCP. I am sure most doctors can recommend audiologists, they must have other patients with hearing impairments.
As far as researching hearing aids themselves, I think there are sites that do review them. From what I know, Oticon, Phonak, and Widex are all well regarded. If you go to an audiologist who prescribes those brands I am sure they will help you what the right hearing aid is for you.
Let me know what you find out. I know this is difficult. When I first started with an audiologist it was because I realized that my daughter at age 3 was having a problem hearing. Her pediatrician had me put off getting her tested for a year but when I did he was the one who recommended someone. That was in 1986 and I still go to the same office, just a different audiologist. I did not develop a hearing problem until around 2004.

@2mnycars Hi Dave. I have no idea on how you would set up a regional forum but I think a first step would be to speak to your audiologist and have them notify other patients that you were doing that, and perhaps have some brochures available for the audiologist to give out to patients. You could bring them to other audiologists' offices too.
I'm glad that you are so happy with your current hearing aids. So much depends on the audiologist and on the support they give you. I was having problems that my audi could not resolve so she actually had a representative come two times from the company (Oticon). The rep was in Saratoga NY and my audi is in Manchester, NH, so it was not a short journey. My issues did get resolved though, it turned out that I had a defective hearing aid. They even gave me a break on the price of an accessory due to the problems I had. If you want to learn more about the getting ways to get the best help from your aids I suggest you sign up for emails from CHC --- Center for Hearing and Communication in NYC and FL. Many of their emails are telling about events but they also sometimes have some about real life experiences. There is a book that one of the people who I believe is associated with them has written that I intend to purchase. It's "Smart Hearing: Strategies, Skills, and Resources for Living Better with Hearing Loss" by Katherine Bouton, and is available on Amazon. I haven't bought it yet so I can't positively vouch for it but it sounds promising.
JK

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Have had a hearing loss since childhood, but just began wearing aids in 2011. Was told in the past my hearing wasn’t correctable. Lost so many years, misunderstandings, and socializing because of this. Am looking to replace my hearing aids which are very expensive so doing some research so I make the right choice in the replacement.

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@2mnycars

I understand that this is a place to meet others who have experience with hearing loss. However, I live in Ontario Canada. Is there some way to set up a regional forum so I may learn about local solutions? I'm on my 3 rd set of hearing aids over the last 15 or so years. First 10 years was awful Difference was finding an extraordinary audiologist. Unfortunately she sold her business 1 year after she supplied me with my second set of hearing aids. I'm now on my 3rd pair of hearing aids. I'm finally happy with the way these hearing aids are performing after insisting on some basic changes in the way they are setup.

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@johntm, welcome. I'm glad you and others have "moved house" to migrate from the HLAA forum to Mayo Clinic Connect. I'm confident you'll connect with old and new friends here. Can you explain more how your hearing aids are customized for birding?

@2mnycars Dave, you will certainly find other Canadians and Ontarians on Connect. Not sure if we have any in the Hearing Loss group yet, but we inevitably will. By your sharing your location, it will help others from Ontario to find you here on this forum so you can ask more regionally specific questions. Until then, I trust there are many universal solutions, tips and support that you can give and get here.

@sputnik904, welcome. Members have started sharing tips on hearing aids in this discussion:
- Hearing aids https://connect.mayoclinic.org/discussion/hearing-aids-1/
What issue are you current hearing aids no longer serving?

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