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?

80 is young Lou. You've got me by 2 years. I hope your new hearing aids have two things; manual volume control and manual telecoil. Vital if you want to take advantage of many other technologies out there. Resound is a good brand. A lot depends on what you want to hear. Telecoils can connect you to the performing arts and to any audio device that has an input jack from cell phones, computers, etc. to iPads, portable radios (you and I know about those, some of the young folks dont!) Good luck to you.

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And Lou – Like Julie says…I have Resound hearing aids, also 5 years along with them and I love them. They work well with my hearing loss. I work with them on my iPhone 8+. I have 4 programs that allow me to set up whatever I need depending on where I am and what I need. My audiologist set them up so that I can use them for everyday need, the tinnitus use, the t-coil use and the loud-eating establishments places. I use all programs and it makes a difference. I can manually change my settings on my iPhone depending on where I am if I am not pleased which what the default setting is. My hearing aids learn how I use them – so I don't have to do that too often. Tell your audi just what you need the aids to do for you. I needed my aids to help me not hear my tinnitus 24/7 and I needed to blank out the background noise in the restaurants. I also wanted to hear in the loop at church with my t-coil or on my cell phone. Each hearing aid these days have many new features that Julie and I didn't have 10 + years ago before they became digital. It is amazing….

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@nurseheadakes

And Lou – Like Julie says…I have Resound hearing aids, also 5 years along with them and I love them. They work well with my hearing loss. I work with them on my iPhone 8+. I have 4 programs that allow me to set up whatever I need depending on where I am and what I need. My audiologist set them up so that I can use them for everyday need, the tinnitus use, the t-coil use and the loud-eating establishments places. I use all programs and it makes a difference. I can manually change my settings on my iPhone depending on where I am if I am not pleased which what the default setting is. My hearing aids learn how I use them – so I don't have to do that too often. Tell your audi just what you need the aids to do for you. I needed my aids to help me not hear my tinnitus 24/7 and I needed to blank out the background noise in the restaurants. I also wanted to hear in the loop at church with my t-coil or on my cell phone. Each hearing aid these days have many new features that Julie and I didn't have 10 + years ago before they became digital. It is amazing….

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Like you, I use my iPad to control my aids using all of the programs. Looking forward to getting the new set using the 3D app. My aids still work well, but they are “in the ear” and the fit has changed over the years, plus I had a new audio gram which revealed my changed profile (age 80). Thanks for the reply. I still have a flip phone that I have had for years, plus it is rarely, ever turned on. As for tinnitus, I try to keep my vitamins up to Date to reduce the effect. Thanks, Lou

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@julieo4

80 is young Lou. You've got me by 2 years. I hope your new hearing aids have two things; manual volume control and manual telecoil. Vital if you want to take advantage of many other technologies out there. Resound is a good brand. A lot depends on what you want to hear. Telecoils can connect you to the performing arts and to any audio device that has an input jack from cell phones, computers, etc. to iPads, portable radios (you and I know about those, some of the young folks dont!) Good luck to you.

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Maybe, but I’ll take 70 over 80. Yes my aids have all those feature for other devices like the tv, phone etc. I prefer not to use those features as I use other methods like a Vox speaker on the tv, etc.. I do control my aids from my iPad with the Smart app for volume, ranges, etc.. But looking forward to the new ones, due in next week.

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@missniki621

Thanks for sharing, Jon.
I rarely eat anything processed to begin with, so the sodium thing is easy to monitor. My dr prescribed Triamterene, which seems to be helpful so far. And I've used the Meclizine once – slept a solid 24 hours with that! Lol
It's comforting to hear that you've done without aids for so long.

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Sounds much like what I had. Diagnosed as Menieres. Meclizine and HCTZ (diuretic) helped most. Recently had an episode after 4 yrs and a week of Meclizine and HCTZ fixed it for me.

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@lou1940

Maybe, but I’ll take 70 over 80. Yes my aids have all those feature for other devices like the tv, phone etc. I prefer not to use those features as I use other methods like a Vox speaker on the tv, etc.. I do control my aids from my iPad with the Smart app for volume, ranges, etc.. But looking forward to the new ones, due in next week.

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Wondering what state you live in Lou. If there's an HLAA Chapter anywhere near you, you should check them out.

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Hello. My name is Dean. I am 73 retired living near Chicago. Healthy active engaged in hobbies including dancing w my wife of 53 years, photography, cooking, art, travel–the usuals. Was diagnosed recently w Auditory Schwanomma left ear w typical Sudden Hearing Loss symptoms including tinnitus, etc. Have decided to wait and watch with MRI every 6+months to check growth, or hopefully lack thereof tumor. Have recently (6 months since diagnosis) developed balance problems which affect walking mostly, which is manageable but concerning since dancing w a partner is balancing on 4 feet.

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I have the same, right side, hearing absent that side. I had gamma knife radiation and, after one year, no growth. Will be getting an MRI after another year passes. Dizziness also, unsteady walk, although being 87 doesn't help the unsteadiness I imagine. If it's still growing after 6 months I wouldn't wait asking about some form of whatever 's available in your case – the gamma radiation is not atomic type, consists of gamma waves in my case.

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@deanodesigner

Hello. My name is Dean. I am 73 retired living near Chicago. Healthy active engaged in hobbies including dancing w my wife of 53 years, photography, cooking, art, travel–the usuals. Was diagnosed recently w Auditory Schwanomma left ear w typical Sudden Hearing Loss symptoms including tinnitus, etc. Have decided to wait and watch with MRI every 6+months to check growth, or hopefully lack thereof tumor. Have recently (6 months since diagnosis) developed balance problems which affect walking mostly, which is manageable but concerning since dancing w a partner is balancing on 4 feet.

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Hi Dean. Welcome to 'Connect'. It really does help to compare experiences and situations. So good that you are staying active with hobbies you obviously enjoy. My hearing loss is of the bilateral, sensorineural, progressive type that has been a part of my life for nearly 60 years. Because I've been involved in the Hearing Loss Assn. of America (HLAA) for over 37 of those years, I've met many people with the diagnosis you describe, along with many other diagnoses. Some things you have to learn to live with, but don't let anyone tell you there is no help for your hearing loss. Hearing aids can make a huge difference. There are devices that will transmit sound from the 'deaf' side to the hearing side so you don't have to struggle with single sided hearing loss. There is a whole slew of technologies that help in different situations, but many don't know they exist. Living with hearing loss is a lifelong learning process! There are chapters of HLAA in the Chicago area. It might be worth connecting with one of them. It's good to openly discuss our concerns with people who understand. More information at: http://www.hearingloss.org

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@djwenz

I have the same, right side, hearing absent that side. I had gamma knife radiation and, after one year, no growth. Will be getting an MRI after another year passes. Dizziness also, unsteady walk, although being 87 doesn't help the unsteadiness I imagine. If it's still growing after 6 months I wouldn't wait asking about some form of whatever 's available in your case – the gamma radiation is not atomic type, consists of gamma waves in my case.

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Thanks for reply. I am starting to think about radiation in case my benign tumor grows, doing an MRI soon to compare w the first. Obviously radiation of any kind poses risks to further loss etc etc. Wait n watch works only if nothing changes, which is hopeful but improbable. Be well.

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@deanodesigner

Thanks for reply. I am starting to think about radiation in case my benign tumor grows, doing an MRI soon to compare w the first. Obviously radiation of any kind poses risks to further loss etc etc. Wait n watch works only if nothing changes, which is hopeful but improbable. Be well.

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Reply to Dean re balance: You can regain much of the balance you lost via VRT (vestibular rehab therapy). Today there are VRT specialists in many places. You need to learn to use your third balance system, proprioception, the feeling you get from your entire body, esp. your feet, as you move. I lived through four years of hell with unilateral Meniere's Disease on my right side, learned what my trigger is and got MD under control, then started VRT. At that time there were only a handful of VRT therapists in the world, so I learned via e-mail and practiced it every day for nearly 40 years. I was able to do extremely active hiking and wading, climb ladders, etc. almost as easily as a "norm." Then, a year ago, I went bilateral. Suddenly, my bad side is my best side! I've gotten the disease under control once again and have just begun a new round of VRT with a real live practitioner. The first thing I learned is that through daily work all these years, I've managed to maximize the small amount of residual balance function on my right side. Now, I'm learning to do the same on the left side.

I just checked VEDA's list of VRT people and see that Dr. Timothy Hain is still working in Chicago. He was one of the best and earliest docs to diagnose and treat people with vestibular (balance) disorders 40 years ago. FWIW, VEDA is the Vestibular Disorders Assn., has lots of info and references available at vestibular.org. With only the first two weeks' new effort behind me, I can already feel some improvement, and I'm confident that I'll be able to regain stability and balance…even though I'll be doing daily exercises for the rest of my life. I'm currently 78 and intend to continue to do volunteer instream work for our Fish & Game agency in a very difficult, wild little stream on Oregon's north coast…for years to come.

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@joyces

Reply to Dean re balance: You can regain much of the balance you lost via VRT (vestibular rehab therapy). Today there are VRT specialists in many places. You need to learn to use your third balance system, proprioception, the feeling you get from your entire body, esp. your feet, as you move. I lived through four years of hell with unilateral Meniere's Disease on my right side, learned what my trigger is and got MD under control, then started VRT. At that time there were only a handful of VRT therapists in the world, so I learned via e-mail and practiced it every day for nearly 40 years. I was able to do extremely active hiking and wading, climb ladders, etc. almost as easily as a "norm." Then, a year ago, I went bilateral. Suddenly, my bad side is my best side! I've gotten the disease under control once again and have just begun a new round of VRT with a real live practitioner. The first thing I learned is that through daily work all these years, I've managed to maximize the small amount of residual balance function on my right side. Now, I'm learning to do the same on the left side.

I just checked VEDA's list of VRT people and see that Dr. Timothy Hain is still working in Chicago. He was one of the best and earliest docs to diagnose and treat people with vestibular (balance) disorders 40 years ago. FWIW, VEDA is the Vestibular Disorders Assn., has lots of info and references available at vestibular.org. With only the first two weeks' new effort behind me, I can already feel some improvement, and I'm confident that I'll be able to regain stability and balance…even though I'll be doing daily exercises for the rest of my life. I'm currently 78 and intend to continue to do volunteer instream work for our Fish & Game agency in a very difficult, wild little stream on Oregon's north coast…for years to come.

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Thanks Joyces for the strong motivational aspect of your comments. I don't have MD but I sure have balance problems (from NF2 and probably just getting older). I use a cane when surfaces are not pretty smooth and at nighttime. I had balance PT first in 1996, when I had surgery for an acoustic neuroma (on the 8th nerve) which messed up some the 7th nerve = balance . The therapy helped some for a while but after a certain point it didn't seem to make a difference. Since that first time, I've had PT for balance, at least twice but have never felt since, that it accomplished anything for me. If I am doing PT, I like to see some results. I am wondering if I have to do the PT for a long time without seeing any results (or any results that seem significant) i.e. just be patient when it seems like nothing is happening?! I live in NYC with access to the best medical facilities so that is not part of the problem. I see that you refer to VRT – as opposed to just PT. I think the first experience was probably VRT. What years are you referring to when you say there were only a few VRTs?
P.S. I am trying to remember what the 3 contributors to balance are: vision, and you have named another – proprioception, and I've forgotten the 3rd!

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Joyces, one further comment I wanted to make. I trust I may be one in a long line of people who have said something to the effect that you are to be very much commended for your diligence in dealing with the challenges thrown at you!

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To BarbB: There's a big difference between a PT and VRT specialist. The PT person basically aims to get you moving without pain, while the VRT person is almost solely concerned with improving your balance. The first thing a good VRT does is assess how much balance function you have; then they design a series of exercises that utilizes that residual balance to give you far more stability. While you may use a cane, especially in low light situations, neither is good for your balance function: you rely on the cane instead of learning to "listen" to your feet. And, yes, I know that OLD people are always told to use a cane and provide night lights. Ideally, for your balance, you would walk in SAFE places in your house with all the lights out at night. (No throw rugs, kids' toys, etc. in your path. You should start in a hallway or a space with furniture on both sides for safety, or a helper to walk beside you. I live in the woods, far from streetlights or ambient light sources. My so-called lawn is an acre of elk hoof pits and pocket gopher hills; the driveway and road are potholed gravel. I never, ever take a light with me to walk at night, feeling my way along with my feet.

The three balance systems are:
1. Your incredible inner ear…assuming it hasn't been damaged by disease or age or disuse.
2. Vision, which is bad because every time you move your head or drive around a corner, you lose your focal point. Vision is, however, the system you automatically use if your primary inner ear gyroscope isn't working correctly. You need to work to learn to not rely on vision.
3. Proprioception, which is the feelings transmitted from you feet, ankles, knees, hips, etc.–your entire body. Simply put, if you're standing on a windy point, proprioception will automatically cause you to lean just enough to maintain stability.

If you're working with a good VRT specialist and you do the exercises every day, you should see results within a couple of weeks, really good results within a month. As we age, we lose some of the sensations in our feet and lower legs, so I'm currently learning to listen to my feet for a second time. I often walk on our gravel road, eyes closed, concentrating on how the surface of the gravel feels underfoot. I also have a DyneDisc that I put under my sock feet while I'm just sitting, moving my feet to feel the sensation of all the little points on the soft disc. I've been totally amazed at how many things I can do with my right side, which had been my bad side, as opposed to my newly-involved left side! Hardest exercise so far is stepping down and back up, one foot at a time for five reps, first with eyes closed and then with eyes open. Over the past two weeks I've become less likely to need to grab something beside me, which tells me that I'm getting better. I'm also not stumbling into end tables as often…they seem to be staying where they belong these days! <g> Goal is to be able to do that without wobbling or veering off course; I have a long ways to go! Ahead, I have standing on the disc, one art outstretched, and sitting on a yoga ball, alternating outstretched arms. I also do head/eye exercises every day, staring at a small "X" while rapidly moving my head from side to side.

Even though I've felt much more unbalanced than ever before, I did do a difficult instream survey just before I started VRT. Wading was difficult, and, with current pushing at me sideways, it was a real challenge. Walking along narrow ledges was flat scary. I trust that in 2-3 weeks, when I go back to check on the temperature monitors I placed that day, I'll find it quite a bit easier. I remember over 30 years ago being amazed at how many things there are to see when you're not spending all day staring at the ground! I learned to check the area ahead of me for obstacles and, if there are none, walk forward without looking down. What a revelation! At the time, my husband, grown kids and I played coed basketball once a week. After a month of working hard at rehab, one of the guys remarked that I suddenly needed to be guarded…before that, they simply had allowed me to stumble around the court, knowing I wasn't a challenge at all. The day that I stole the ball from one of my son's friends was very sweet…and he still talks about what a shock it was!

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@dstell

@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

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Are you pleased with the cochlear implants? I lost all hearing in my right ear recently. Oral steroids and ear injections were not successful, unfortunately. I don't think a hearing aid will be helpful. Thank you.

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