Hearing Loss: Come introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Tue, Feb 5 12:02pm

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?

my hearing lost goes way back to childhood with punctured ear drums etc. Allergies had an impact but now i just dont hear well even with hearing aids. I wonder if their is an= magic bullet of hearing aids that actually work.

REPLY

Hello new to this log I have been told that my hearing loss is getting worse especially since November I’m to the point of just I hear you when you don’t I’m so tired of asking what did you say? And then have people to get mad because you can’t hear them. I have been diagnosed with Ménière disease and my ENT is saying to treat this I need a decompression surgery but a lot of things can go wrong like losing my hearing in that ear all together. I’m so confused and scared that this will never get better.
Barbara

REPLY

@cobweb thanks for getting the introductions started in the Hearing Loss group on Connect. I'd also like to invite fellow members to the new group – @dstell @johnnyb7 @ccubed @mtnyankee @conniekay @cynaburst @squaredancer @contentandwell @joechauhan777 @morninglory @trishanna @estrada53 @phillipflippo @upartist @sfskater1958. What is your hearing loss experience?

Cobweb, how did your ear drums get punctured as a child? How long have you been wearing hearing aids?

You ask about hearing aids that work. @dkeefe started a discussion about hearing aids here:
> Hearing aids https://connect.mayoclinic.org/discussion/hearing-aids-1/
It would be great to get more recommendations and people's experiences in that discussion thread.

REPLY

@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

REPLY
@colleenyoung

@cobweb thanks for getting the introductions started in the Hearing Loss group on Connect. I'd also like to invite fellow members to the new group – @dstell @johnnyb7 @ccubed @mtnyankee @conniekay @cynaburst @squaredancer @contentandwell @joechauhan777 @morninglory @trishanna @estrada53 @phillipflippo @upartist @sfskater1958. What is your hearing loss experience?

Cobweb, how did your ear drums get punctured as a child? How long have you been wearing hearing aids?

You ask about hearing aids that work. @dkeefe started a discussion about hearing aids here:
> Hearing aids https://connect.mayoclinic.org/discussion/hearing-aids-1/
It would be great to get more recommendations and people's experiences in that discussion thread.

Jump to this post

By the time i was in second grade, lots of pain etc, from infections and colds i guess. Punctured then.Wearing hearing aids for about 10 years. Hearing lost? Trouble listening to tv with aids in.

REPLY
@cobweb

By the time i was in second grade, lots of pain etc, from infections and colds i guess. Punctured then.Wearing hearing aids for about 10 years. Hearing lost? Trouble listening to tv with aids in.

Jump to this post

One more thing i lived in the suburbs in Pittsburgh where i would wake in the morning with black around eyes and moth etc. Steel mills etc. Lots of pollution.

REPLY

Hello all! I am Scott (aka IndianaScott) and I am very happy to see this group! Hearing loss needs more attention than just the myriad of ads on the TV shilling for hearing aids.

I lost the majority of the hearing on my right side due to meningitis while in my 20s. It progressively worsened until I had a stroke and I went totally deaf on that side. I, like @contentandwell feel lost in noisy spaces and rely on CC on the TV. I will also add I struggle with large tables and out in the wind.

I do not have hearing aids as I have not yet found any that make an appreciable difference Maybe someday! At least I finally found a set of DJ headphones to help me hear stereo music again! Long live the Moody Blues!

Cheers to all!

REPLY
@cobweb

By the time i was in second grade, lots of pain etc, from infections and colds i guess. Punctured then.Wearing hearing aids for about 10 years. Hearing lost? Trouble listening to tv with aids in.

Jump to this post

@cobweb. Many hearing aids have additional devices that you put in front of the tv to transmit the sound directly to your aids. The are not cheap though, I believe around $400.
I have to have CC on or I miss a lot.
I hope you find a solution, and if you do please let us know. I suspect this not an uncommon problem.
JK

REPLY
@cobweb

One more thing i lived in the suburbs in Pittsburgh where i would wake in the morning with black around eyes and moth etc. Steel mills etc. Lots of pollution.

Jump to this post

@cobweb. That’s horrible! I can’t imagine living in an area where that was a problem. It sounds as if you no longer live there so hopefully where you live now has less pollution than tat.
JK

REPLY
@IndianaScott

Hello all! I am Scott (aka IndianaScott) and I am very happy to see this group! Hearing loss needs more attention than just the myriad of ads on the TV shilling for hearing aids.

I lost the majority of the hearing on my right side due to meningitis while in my 20s. It progressively worsened until I had a stroke and I went totally deaf on that side. I, like @contentandwell feel lost in noisy spaces and rely on CC on the TV. I will also add I struggle with large tables and out in the wind.

I do not have hearing aids as I have not yet found any that make an appreciable difference Maybe someday! At least I finally found a set of DJ headphones to help me hear stereo music again! Long live the Moody Blues!

Cheers to all!

Jump to this post

@IndianaScott My hearing loss has become so significant that despite there being problems with the aids, I would be lost without them. I have a great deal of trouble with high frequency speech especially, and with people whose voices are sort of gravely.
JK

REPLY

@colleenyoung, thanks for the invitation to join. My hearing loss began at age 27 when I was diagnosed with Meniere's disease. I went deaf in my left ear within 3 years of diagnosis. I went deaf in my right ear at age 48, also from Meniere's. At that point I was implanted with a cochlear implant in my left ear, and my right ear was implanted 1 1/2 years later.

With this being tinnitus awareness week, I would like to add that, although I am deaf, I have not experienced silence in 27 years.

Feel free to ask me anything about Meniere's or cochlear implants. I'm pretty much an open book on those subjects.

Dennis

REPLY
@contentandwell

@cobweb. That’s horrible! I can’t imagine living in an area where that was a problem. It sounds as if you no longer live there so hopefully where you live now has less pollution than tat.
JK

Jump to this post

After college i moved. Pittsburgh closed most of the steel mills with the loss of jobs. Mills are cleaner now. I retired from teaching at a college but hearing has gotten poorer after retiring. Still do public speaking but i realize i have to speak louder when i speak. Hearing was related to sinus issues over the year. Now its being realistic on what my hearing is , and hope for new innovations.

REPLY

Looking to join an online focus group today? 2/7 1pm ET. Thanks. Barbara Johnson

REPLY
@johnsonbarbara

Looking to join an online focus group today? 2/7 1pm ET. Thanks. Barbara Johnson

Jump to this post

i assume its over. signed on late.

REPLY

Hi. This is Sylvia. I experienced hearing loss in my left ear in my 50’s. Shortly after, I developed Ménière’s disease and have very little hearing in that ear.
I wear hearing aids in both ears and am fine with face to face conversation, but have trouble distinguishing words in a large room like a gym or swimming pool. This makes it difficult to follow instructions in exercise classes. I’m thinking possibly cochlear implants might help. Does anyone have experience with a cochlear implant?

REPLY
Please login or register to post a reply.