Willing to share about your progressive hearing loss?

Posted by ameliabrinker @ameliabrinker, Oct 24 10:47pm

Hello! I was diagnosed with progressive hearing loss last year after my audiologists observed me losing hearing over the last 6ish years.

What's your story? When we you diagnosed? How much hearing have you lost since?

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I got my first hearing aids 5 years I am on my second set. I got new ones 2 years ago because they were supposed to help with clarity which didn’t happen. The best thing is being able to hear the TV and telephone conversations but still have trouble with in groups. Each year my hearing gets worse and there is nothing I can do about it.

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I never really noticed my hearing loss because it was so gradual.
Once I got my first pair of hearing aids I realized all the sounds I was missing. I am on my third pair and each one has been better than the last. I am optimistic that with the help of AI there will be continued progress. At the age of 74 I don’t think regeneration of damaged hair cells will probably happen in my lifetime but hearing aid technology will continue to get better. It seems like every 18 months to two years another breakthrough happens. The holy grail is clarity and background noise. The major hearing aid manufacturers are continuing to make progress. It probably won’t ever be as good as natural hearing but at least it is headed in the right direction.

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My hearing loss which is now characterized as severe was initially evaluated over 10 years ago. My first hearing aid came this year due to a delay in taking action that I own. My hearing worsened suddenly, prompting me to address the problem.
Living in a medically underserved area, more common as time passes, it took a year to investigate if there was an underlying issue.
Unfortunately the medical system often entertains a bias against individuals advanced in age. I am also 74 years old. Essentially an ENT doctor dismissed me as suffering from age related hearing loss (is that really a thing?) that could be corrected by a $7-8,000 hearing aid that they would happily provide.
Unless one is able to self-program an appropriate hearing aid, finding an audiologist is critical to properly fitting and adjusting a device. Matching one’s unique needs with the proper device can be challenging, especially if the issue of affordability needs to be considered. Unfortunately many people with hearing loss are not provided the best advice or adequate follow up care from audiologists.
After some negative experiences, I discovered Ziphearing online. The company offers most brands and models of hearing aids at a transparent discounted price. They provide a firm price for the brand, model and technology level online and process any relevant documentation needed for insurance reimbursement. They refer you to a list of local audiologists and you can evaluate and choose one to your liking. A potentially difficult process became seamless. I was able to acquire the highest technology Starkey model appropriate for my condition at an affordable price.

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Please post your experience in addressing worsening hearing over the years through your hearing aids. In the abstract, it seems that companies are greatly improving their products, but it is hard to access this information. Thank you.

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My daughter has had a sensorineural hearing loss since being a child. We never knew why, and she got by with some accommodations for college, but she is a lip reader. Now, I have been diagnosed with the same thing. I have seen a licensed audiologist at a major medical center and received hearing aids. There are specific aids for specific types of hearing loss, so going to a professional —not a random spot set up in a box store —was important. She and I can only use over-the-ear hearing aids.
The ability to adjust the aids on the phone, stream music, and listen to the phone through the hearing aids is fantastic. What is not wonderful is the itching I get in my ear canals when I use them. I have yet to get a solution for this, if anyone knows of one.
Here is some information about the type of hearing loss we have - https://my.clevelandclinic.org/health/diseases/sensorineural-hearing-loss

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I have been wearing hearing aids for 25 years, on my 4th pair as the technology improves. I get itching in my ear canal also. It drives me crazy. One audiologist suggested using a q-tip to put isopropyl alcohol on the skin. Something about microscopic organisms. It helps sometimes. Does anyone have info on this?

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Profile picture for janetexmsrrose @janetexmsrrose

I got my first hearing aids 5 years I am on my second set. I got new ones 2 years ago because they were supposed to help with clarity which didn’t happen. The best thing is being able to hear the TV and telephone conversations but still have trouble with in groups. Each year my hearing gets worse and there is nothing I can do about it.

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@janetexmsrrose There are some very basic hand held microphone accessories that can help a great deal in noisy environments. Did your provider tell you about them?

I have learned more about assistive technology from other people with hearing loss than anywhere else. If there is an HLAA Chapter in your area, it is well worth attending their meetings. A lot of them are meeting online via Zoom so are open to people who are not able to attend in person. The Hearing Loss Association of America (HLAA) has good information on their website too. http://www.hearingloss.org

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Profile picture for ksa230 @ksa230

My daughter has had a sensorineural hearing loss since being a child. We never knew why, and she got by with some accommodations for college, but she is a lip reader. Now, I have been diagnosed with the same thing. I have seen a licensed audiologist at a major medical center and received hearing aids. There are specific aids for specific types of hearing loss, so going to a professional —not a random spot set up in a box store —was important. She and I can only use over-the-ear hearing aids.
The ability to adjust the aids on the phone, stream music, and listen to the phone through the hearing aids is fantastic. What is not wonderful is the itching I get in my ear canals when I use them. I have yet to get a solution for this, if anyone knows of one.
Here is some information about the type of hearing loss we have - https://my.clevelandclinic.org/health/diseases/sensorineural-hearing-loss

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@ksa230 I too have itchy ear canals. I try to use some hydrocortisone cream at night when I don't wear them. Seems to help some the next day. I've also hear some say olive oil. A itty bitty amount on your finger tip. I would do this at night too as either one might get into the rubber ear mold that protects the microphone and require it's replacement more often than just from ear wax. My AuD sells a little bottle of some mix of "natural" oils, but I think it's like $8.

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Profile picture for gcasusan @gcasusan

I have been wearing hearing aids for 25 years, on my 4th pair as the technology improves. I get itching in my ear canal also. It drives me crazy. One audiologist suggested using a q-tip to put isopropyl alcohol on the skin. Something about microscopic organisms. It helps sometimes. Does anyone have info on this?

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@gcasusan I would think alcohol would dry out the skin even more. Seeing a dermatologist might be an approach too.

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