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.

@julieo4

I am unaware of this bill but will keep my eyes and ears open for information. HLAA stays on top of this type of legislation so if this is true we will likely know more soon.

As with all legislation, bills often get presented and nothing happens. It matters a great deal to have constituents contact their legislators on issues that matter to them.

Hopefully someone on MCC will know more about this and respond with more information.

Thank you for bringing this to the fore.

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Thanks for responding so quickly.
The correct name is Esteem inner ear prosthetic inner ear stimulator implant.
The reviews have appeared to be favorable and the hurdle is to have Medicare cover the procedure.
My frustration is that the government was so slow to respond to hearing loss in general and if there is a fully implantable device out there why not approve its use.
CI’s and hearing aids are great but they come with so many restrictions that could be eliminated if these new Esteem inner ear prosthetics could be fully implanted.
You know far more than me. Keep me posted.

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@daveshaw

Thanks for responding so quickly.
The correct name is Esteem inner ear prosthetic inner ear stimulator implant.
The reviews have appeared to be favorable and the hurdle is to have Medicare cover the procedure.
My frustration is that the government was so slow to respond to hearing loss in general and if there is a fully implantable device out there why not approve its use.
CI’s and hearing aids are great but they come with so many restrictions that could be eliminated if these new Esteem inner ear prosthetics could be fully implanted.
You know far more than me. Keep me posted.

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This is a topic we have been discussing for several years. This link was just posted on a site called Audiologist Informer.
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-how-untreated-hearing-loss-can-result-in-a-negative-health-spiral/?utm_source=hearingtracker.com&utm_medium=newsletter
I was unaware of 'The Mayo Clinic Minute'.

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Thanks again for getting back to me so quickly.
They seem to be another possible solution.
Can our advocates push to support this legislation?
Having fully implanted prosthetics would be a breakthrough for all of us that are extremely active.
I am 73 and they could really improve my quality of life as they would for all the people posting on the site.
You do a great job and I am so glad I joined the site. Finally it looks like there are some promising things on the horizon.
Enjoy your long weekend.

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@concannon

Hi, I am new to the group. Suffered some sudden hearing loss in my left ear a few years ago. And just recently, I suddenly lost almost all the hearing I had left in that ear. It was immediately replaced by loud tinnitus. So, I hurried to the ENT to get oral prednisone (recommended treatment for sudden hearing loss) but it didn't restore any of my hearing. On to the next step: injections of prednisone behind the ear drum. I've had two so far and am awaiting the third and final injection. My questions for the group: have any of you had these prednisone injections for sudden hearing loss? Did they actually restore your hearing? Also my tinnitus is strange in that if I yawn, swallow, or (weirdly enough) splash water on face, like to wash it, I get a metallic whistling sound in my left ear. My ENT is not interested in these symptoms. Has anyone tried going to a chiropractor or other specialist beyond ENTs to get to the actual cause of your tinnitus or hearing loss? I'm grasping at straws here, because I'm getting desperate.

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I suddenly lost complete hearing in my left ear almost a year ago, when virus destroyed my nerve. Had intense vertigo, which hit while I was in the ENT's office. Not pretty, but it was interesting for him because he'd only seen patients after all that happened.
Went through the heavy oral steroids and the 3 shots to the eardrum which did nothing for my hearing. But the Ent had said if the oral steroids didn't work, there were really no other promising options. My age (80) and the extremeness of my vertigo were signs that I probably wouldn't have any improvement.
Unfortunately he was right. And I also get the different sounds in my ear along with the tinnitus.
I've read a bit about bicros hearing devices, but can't see how more sound coming in my good ear will be that more beneficial. I don't think they'd help in being able to source sounds.
I go back for a yearly follow-up next month and have a list of questions, but I'm afraid this is my new normal.

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I am fairly new to hearing loss. Mine started after having Covid. I believe for sure that is why I lost hearing, but my hearing loss has been treated as an aging issue.

I’ve been wearing Signia hearing aids for two years. At first they helped, but over time I have developed tinnitus and hyperacusis. (I think triggered by MRI without good ear protection)

Anyway, now I have a balancing act to try to increase hearing, but still tolerate hyperacusis! It’s tough to balance volume to hear, but not have hyperacusis unbearable.
I have an appointment to discuss Lenire and see if that might alleviate some distress from tinnitus. I don’t believe it effects hyperacusis one way or another.
I’m curious if anyone else has had similar condition and if they’ve found relief from anything.
It’s made my life a misery.

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@mobear

I suddenly lost complete hearing in my left ear almost a year ago, when virus destroyed my nerve. Had intense vertigo, which hit while I was in the ENT's office. Not pretty, but it was interesting for him because he'd only seen patients after all that happened.
Went through the heavy oral steroids and the 3 shots to the eardrum which did nothing for my hearing. But the Ent had said if the oral steroids didn't work, there were really no other promising options. My age (80) and the extremeness of my vertigo were signs that I probably wouldn't have any improvement.
Unfortunately he was right. And I also get the different sounds in my ear along with the tinnitus.
I've read a bit about bicros hearing devices, but can't see how more sound coming in my good ear will be that more beneficial. I don't think they'd help in being able to source sounds.
I go back for a yearly follow-up next month and have a list of questions, but I'm afraid this is my new normal.

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Thanks for your reply! Sorry this might be your new normal, could be mine too.

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@mobear

I suddenly lost complete hearing in my left ear almost a year ago, when virus destroyed my nerve. Had intense vertigo, which hit while I was in the ENT's office. Not pretty, but it was interesting for him because he'd only seen patients after all that happened.
Went through the heavy oral steroids and the 3 shots to the eardrum which did nothing for my hearing. But the Ent had said if the oral steroids didn't work, there were really no other promising options. My age (80) and the extremeness of my vertigo were signs that I probably wouldn't have any improvement.
Unfortunately he was right. And I also get the different sounds in my ear along with the tinnitus.
I've read a bit about bicros hearing devices, but can't see how more sound coming in my good ear will be that more beneficial. I don't think they'd help in being able to source sounds.
I go back for a yearly follow-up next month and have a list of questions, but I'm afraid this is my new normal.

Jump to this post

Hi! Your story is nearly the same as mine! I experienced total hearing loss in my left ear in 2004. I tried the bicros devices for a couple of years and gave them up. You are right in your thinking that it doesn’t help in sourcing sounds. I found the only benefit was someone could whisper in my left ear and I knew it right away. I also need an aid in my right ear so if I don’t “see” the sound (have learned to look around a lot)I still don’t where a sound is coming from. I’m 73 now and this has been my normal for a while. Not the greatest , hearing only on one side, but it’s doable.

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@dloos

I am fairly new to hearing loss. Mine started after having Covid. I believe for sure that is why I lost hearing, but my hearing loss has been treated as an aging issue.

I’ve been wearing Signia hearing aids for two years. At first they helped, but over time I have developed tinnitus and hyperacusis. (I think triggered by MRI without good ear protection)

Anyway, now I have a balancing act to try to increase hearing, but still tolerate hyperacusis! It’s tough to balance volume to hear, but not have hyperacusis unbearable.
I have an appointment to discuss Lenire and see if that might alleviate some distress from tinnitus. I don’t believe it effects hyperacusis one way or another.
I’m curious if anyone else has had similar condition and if they’ve found relief from anything.
It’s made my life a misery.

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I’ve been noticing hear.com is suggesting that we, who suffer from tinnitus AND hyperacusis, have suggested trying them out: HORIZON lX. Has anyone heard about them? I’ve also known that Phonak is doing something similar. Worthwhile? Probably yes!

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@jaynes40

I’ve been noticing hear.com is suggesting that we, who suffer from tinnitus AND hyperacusis, have suggested trying them out: HORIZON lX. Has anyone heard about them? I’ve also known that Phonak is doing something similar. Worthwhile? Probably yes!

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Neither of these have been suggested for me. I was “upgraded” from Signia aids to Oticon, and had no improvement. In addition Oticon proved “finicky” and less user friendly. I returned and went back to Signia. They help me a little.

I’m about to see a new Audiologist for Lenire treatment, and I’ll ask about Horizon1X and Phonak.
Thanks for the info.

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