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.

@wassy2019

Yes, people (young people especially), often associate hearing impairment with not being intelligent. This is upsetting on many levels, especially in a work situation. As I speak up about my loss, I find it better to put it out upfront – I say to the person that I have hearing loss and need them to speak to me when facing me,… This generally works well and puts the burden of communication on the other. If they forget to face me, and I can't hear, I repeat my request, but at this point, the responsibility shifts so that I am not 100% responsible to hear everything regardless of the environment. Sometimes the other person is the one to feel "less than" for not communicating properly!

Jump to this post

I have had that problem my entire life! But even when I tell people that I can’t hear, they still don’t believe me. That’s the biggest plus of the cochlear. I wear it like a badge! 🙂

REPLY
@contentandwell

@bradmm I never thought of myself as reading lips but my hairdresser told me that he sees me doing that! After he commented on it I realized he was right, it is a lot easier when you are looking at a person to understand what they say.
My husband keeps the remotes close to him but he too will mute if I try to speak.
JK

Jump to this post

I read lips so well that even after I scored zero on The pre cochlear test, I still wouldn’t believe them when they discussed my profound hearing loss!

REPLY
@dsh33782

Hello, my hearing loss goes back about 3 years when ENT said I could benefit from hearing aids to hear TV and others in group settings and around home so I'm not always saying "What" and moving closer. I went to "Sound Advice Hearing Center" here in St. Pete FL and ended up with Oticon OPN1 hearing aids with bluetooth support. They are wonderful as I no longer say "What" unless my hearing aids are out. I also got an Oticon TV adapter which connects TV digital out to OPN1s. This really makes TV sound like surround sound which I can control separate from external speakers. Since I also have low vision due to glaucoma and can't read books easily, I now love listening to audio books from audible.com which I download to iPhone and listen to via OPN1s while exercising at the YMCA gym.

Jump to this post

I love Sound Advice! They are such honorable people that instead of selling me another hearing aid, they convinced me to consult with a cochlear surgeon.

REPLY
@judymartin

Thanks, @cjspizz. As one of the moderators on the HLAA Message Board, I was asked to post information regarding this Forum. I'm interested in seeing how many come here because the Hearing Loss Association of America.

Jump to this post

Judy I just joined and posted intro today because I got email notice from HLAA. Thanks!

REPLY
@catladyde9

75 years old starting my third year wearing hearing aids (Rexton Trax 42) I can only wear over the ear hearing aids. Still notice the voice quality differences between using my wonderful amplified telephone without the aids and the voice quality I experience when I wear the aids, especially the quality of women's voices which are noticeably different. One of the the sounds I miss the most — being able to hear and enjoy my cats' purring. Do not know of any local support groups in my region which are known as the "Eastside" cities across Lake Washington from Seattle.

Jump to this post

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.

REPLY

Glad to join up on Connect. I was an intermittent participant on the HLAA forum. I am 69 y/o retired guy with passion for birding, bicycling, nature. Volunteer naturalist with local metroparks. Perpetually beginning ASL student. Bilateral moderate to severe hearing loss. BTE HAs for 4 years. Have a hearing aid program customized for birding that works pretty well. Meetings, noisy environments, family interactions very frustrating. Use streamer to cell phone, streamer from TV sound system, caption phone. Greetings to all.

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY
@contentandwell

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

Jump to this post

@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.

REPLY
@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.

Jump to this post

@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

REPLY

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.

REPLY
@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.

Jump to this post

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.

REPLY
Please sign in or register to post a reply.
  Request Appointment