Hearing Loss: Come introduce yourself and connect with others

Posted by Colleen Young @colleenyoung, Feb 5, 2019

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?

@banshee

Just signed up. I've been losing my hearing since I was a child, and now have severe bilateral loss, sensorineural. On my 3rd pair of hearing aids (Oticon OPN) which I wear faithfully, but I still cannot hear well. My hearing loss creates difficult situations, miscommunication, fatigue, and isolation. On the UP side, I am able to use my experience with these challenges in my job as a Peer Support Specialist.

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I sincerely hope that you will consider cochlear implants if you are not doing well with your newest hearing aids. I am bimodal, which means I use a cochlear implant on one ear and a hearing aid in the other. It has worked very well for me. Both ears have similar hearing loss. I would be a candidate for a second implant, but feel I do quite well using both technologies. My brain has wired itself to hear with both of them. If I remove one technology I don't do very well with the other. It doesn't matter which one. I do know that if I had to only use one that it would be the cochlear processor. I used hearing aids for 30 years before having the CI surgery.

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@cherriann

Thank you so much for update on how the new hearing aids are working for your tinnitus, lioness. I am going to check out heartech site and do a little research on them. I would sure be pleased if I could purchase aids that helped more than the ones I presently have that were very expensive, but really have did "nothing" to lessen noise. Me and my wallet would be thrilled if I could find a pair that wouldn't be so costly and above all, help me hear better! Is there a specific type or model number that you purchased?

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Cherriann: I see you have issues with tinnitus. I am not sure what you hear but I have the tinnitus with the real high pitched ring and also was diagnosed with reactive tinnitus…this is a real low pitched drone. It gets worse when I am exposed to noise…like that found in restaurants or meeting places. I spent 4 hours at the Froedert Tinnitus/Hearing clinic in Milwaukee 6 weeks ago and was very pleased with the time they spent with me. They recommended sound therapy(white noise,etc) several hours and day. I can either use my earmuffs or my Phonak Compilot 2. I should see results within 6-9 months. I will let you know how that works. I am finally understanding the problem. I have been retired for a little over a year. When I was working my office was right above the plants compressor/utility area. The low drone pitch I am hearing now is the noise I was exposed for over 30 years! Isn't that interesting? Just thought I would share this. Hope things get better for you!
Scott

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For those of you who are concerned about COVID-19, and who isn't, there is a new group to discuss these issues. It's
https://connect.mayoclinic.org/group/covid-19/
In it, people can discuss their concerns and share information that is from reliable sources. There is much information out there that is bogus, so do not fall prey to it. Things such as gargling with warm salt water to kill the germs before they get further, some of the recipes for homemade hand sanitizer. There is much less need for hand sanitizer now since most of us are going out very infrequently, just when absolutely necessary. The most effective is washing your hands with good, old regular soap for 20 seconds.
JK

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First of all, thank you for moderating. Hearing issues don’t stop in COVID-19 times. I am 58 years old. I have a congenital hearing loss which means it was present at birth. As an adult, I wear a BTE on my right ear which was reconstructed in surgeries during my childhood. I have Atresia on my left side and recently decided to see if I was a candidate for BAHA. I am which makes me very happy. Sad though because understandably I may have to wait until C-19 has subsided a bit. In the meantime, my BTE quit and am testing new aids. In any other time, I would be happy for these developments but am not.

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@maryella7

First of all, thank you for moderating. Hearing issues don’t stop in COVID-19 times. I am 58 years old. I have a congenital hearing loss which means it was present at birth. As an adult, I wear a BTE on my right ear which was reconstructed in surgeries during my childhood. I have Atresia on my left side and recently decided to see if I was a candidate for BAHA. I am which makes me very happy. Sad though because understandably I may have to wait until C-19 has subsided a bit. In the meantime, my BTE quit and am testing new aids. In any other time, I would be happy for these developments but am not.

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Hi @maryella7 Welcome to Connect.
I have a hearing loss that occurred as I aged, it started when I was in my 50s, but my daughter has always had one, presumably since birth since there did not seem to be anything that would have caused it afterward. I was diagnosed much after my hearing loss started with non-alcoholic cirrhosis and I have read that it can sometimes can cause hearing loss so that perhaps was the cause of mine.
I was the person who recognized that my daughter was not hearing well but at that time I was told by her pediatrician it was difficult to test a young child (she was 3) for hearing loss unless it was profound, which hers was not and is still not in her 30s. They told me that about 80% of the time in cases like hers they never really know what the cause was.
It is tough to have to wait for something that will help you so much. It's understandable that you are not happy with these developments. My loss is severe in one ear and profound in the other at this point but I have been told that a BAHA would not help with my type of loss. Apparently a CI would but I am not ready to take that irreversible step.
JK

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@contentandwell

Hi @maryella7 Welcome to Connect.
I have a hearing loss that occurred as I aged, it started when I was in my 50s, but my daughter has always had one, presumably since birth since there did not seem to be anything that would have caused it afterward. I was diagnosed much after my hearing loss started with non-alcoholic cirrhosis and I have read that it can sometimes can cause hearing loss so that perhaps was the cause of mine.
I was the person who recognized that my daughter was not hearing well but at that time I was told by her pediatrician it was difficult to test a young child (she was 3) for hearing loss unless it was profound, which hers was not and is still not in her 30s. They told me that about 80% of the time in cases like hers they never really know what the cause was.
It is tough to have to wait for something that will help you so much. It's understandable that you are not happy with these developments. My loss is severe in one ear and profound in the other at this point but I have been told that a BAHA would not help with my type of loss. Apparently a CI would but I am not ready to take that irreversible step.
JK

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Hi JK,
Yes. One does feel alone, even in one’s family. I am feeling better with the responses I have been receiving these past few days. They have really helped. Having a hearing aid “crap out” on me is teaching me to do better next time-get my money’s worth. Which ever hearing brand I go with, I will make sure I get the aid checked on a schedule much like a car.
Today’s mail brought me good news! I don’t have to wait. The insurance approval came through. The procedure is same day at a surgery center not at a hospital. I’m 58 almost 59. It’s time to wake up the left side of my head.

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@maryella7

Hi JK,
Yes. One does feel alone, even in one’s family. I am feeling better with the responses I have been receiving these past few days. They have really helped. Having a hearing aid “crap out” on me is teaching me to do better next time-get my money’s worth. Which ever hearing brand I go with, I will make sure I get the aid checked on a schedule much like a car.
Today’s mail brought me good news! I don’t have to wait. The insurance approval came through. The procedure is same day at a surgery center not at a hospital. I’m 58 almost 59. It’s time to wake up the left side of my head.

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@maryella7 That's wonderful that you don't have to wait for you BAHA, you must be so excited to be able to move forward on it. I really am excited for you and look forward to hearing how it goes.
I know little about these, but I presume that there are different brands as there are in regular HAs. I hope the audiologist you are dealing with recommends a good one for you. I have good experiences with regular HA brands Phonak, and Oticon. My daughter currently has ReSound and loves them. I have had Widex recommended too by a highly regarded audiologist. Do these brands also make the BAHAs?
JK

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@contentandwell

@maryella7 That's wonderful that you don't have to wait for you BAHA, you must be so excited to be able to move forward on it. I really am excited for you and look forward to hearing how it goes.
I know little about these, but I presume that there are different brands as there are in regular HAs. I hope the audiologist you are dealing with recommends a good one for you. I have good experiences with regular HA brands Phonak, and Oticon. My daughter currently has ReSound and loves them. I have had Widex recommended too by a highly regarded audiologist. Do these brands also make the BAHAs?
JK

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Hi JK, It will be fitted with an Oticon Ponto 4 once the healing period is over. I have had Phonaks previously for my right ear. They last a long time. I’m turning in my Oticon demo and most likely purchasing Resound the first demo I tried. I love the itty bitty receiver size. I don’t know if it’s spring allergies or the Oticon demo, but I have had headaches for a solid week. Ugh. I will definitely keep you apprised of developments. One thing I will do at audiologist appointments from now on is request a writeup of the appointment. Goals, expectations, etc. In hindsight, I am stunned that I leave a hearing office without one. It should be standard practice. Anyway thanks. Comments welcome! Mary

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@maryella7

Hi JK, It will be fitted with an Oticon Ponto 4 once the healing period is over. I have had Phonaks previously for my right ear. They last a long time. I’m turning in my Oticon demo and most likely purchasing Resound the first demo I tried. I love the itty bitty receiver size. I don’t know if it’s spring allergies or the Oticon demo, but I have had headaches for a solid week. Ugh. I will definitely keep you apprised of developments. One thing I will do at audiologist appointments from now on is request a writeup of the appointment. Goals, expectations, etc. In hindsight, I am stunned that I leave a hearing office without one. It should be standard practice. Anyway thanks. Comments welcome! Mary

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@maryella7 I am really hoping that this will be a huge improvement for you.
You made me realize that I also never get a write-up of the appointment. I think I will ask for one in the future. I’ll have to do it tactfully so my audiologist doesn’t think I’m trying to try to prove her wrong. I trust her very much but they are not on a portal and communication with her is difficult outside of an appointment.
JK

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My hearing loss started possibly at least ~10+ years ago. I didn't figure out what was possibly wrong and got a hearing test about ~6+ years ago. I have sensorineural hearing loss. I'm guessing it's at least moderate, because I have BTE Oticons. At that time, they prescribed a hearing aid for my left ear only. I had hearing loss in the left ear at the time, but there was something about it that they said I couldn't use a hearing aid yet. ~2+ years later, I also got a hearing aid for the left ear.

Now that the hearing aids are over 5 years old, and some of the technology has improved. I have started the process of looking for new hearing aids. The problems I have had have had have really worn on me, so I want the best possible hearing aids along with all the best features.

I have a huge problem hearing in noisy places, like restaurants. And, understanding anyone with an accent different than mine is extremely difficult. I also quite often told that I am talking too loud, and I don't realize I'm doing it. (I have the custom ear molds, and I wonder if that's why I'm talking so loud, because their sealing the noise in. Just before COVID-19 shut down all the hearing aid centers here, I went and explore Costco's moderately price hearing aid that is top rated by Consumer Reports. The specialist there said that most people do not need custom ear molds. They are over prescribed. He would sell me one if I insisted, but he wouldn't recommend it. [And, don't knock Costco, this guy was very experienced and knew what he was talking about.] After a free, full hearing aid test, I did a several minute trial of the hearing aids there. He said that if they don't soon better than the ones I had, then I should not buy them. They did not, so I did not.

The brands I'm considering are Oticon, Signia, Phonak, Widex and Resound. [Other than the typical hearing aid problems, I have liked the Oticons. I also have a friend that just got the new Oticons, she loves them and everything she describes about them suggests that I would like them too.]

I would like to find a place that would let me take at least a few minute test of the brands they stock, before buying one for the trial period. That is what Mass Eye & Ear did for me when I got my first hearing aids. One brand was Oticon and the other was either Phonak or Widex. I had a clear preference to the Oticon's and did not like the tinny sound of the other one at all. Before the COVID-19 shutdown, I started calling a few places, and I got very mixed responses about whether they would be willing to do that or now. I'm, of course, leaning towards visiting the centers that would allow me to do this.

The other thing I would like to do is visit a few different hearing aid centers, as most of the centers in the area only carry a subset of the brands I'm interested in exploring. But, my insurance requires a referral by my HMO PCP to go to one of these places. I'm unsure how to handle this with my insurance. I don't know if they would do that. During my earlier discussions with them on a another subject concerning hearing aid centers, it became clear that the person speaking to me knew nothing about what she as talking about.

I would appreciate any and all feedback/opinions on my comments above. I live due north of Boston, a few miles from the New Hampshire border, so, if anyone lives in this area and has specific recommendations on where to go, that would be very welcomed too.

Thanks.

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Welcome to the forum. From your description above it seems to me that you have at least a severe hearing loss or worse. (just guessing).

Ear moulds usually serve to deliver sound more directly to the ear drum and to prevent feed-back by preventing the amplified sound to get back the the hearing aid microphones. Some ear moulds are vented and vent holes come in different sizes. Some are not vented at all. Generally the less venting the more sound amplification the hearing aids are delivering.

I believe that hearing aid adjustment, tuning, and features are more important than brands. Some brands do offer more features than others. Oticons are very good, but there are others too.

Do your homework and find a great audiologist. It makes a huge difference.

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@arrowshooter

Welcome to the forum. From your description above it seems to me that you have at least a severe hearing loss or worse. (just guessing).

Ear moulds usually serve to deliver sound more directly to the ear drum and to prevent feed-back by preventing the amplified sound to get back the the hearing aid microphones. Some ear moulds are vented and vent holes come in different sizes. Some are not vented at all. Generally the less venting the more sound amplification the hearing aids are delivering.

I believe that hearing aid adjustment, tuning, and features are more important than brands. Some brands do offer more features than others. Oticons are very good, but there are others too.

Do your homework and find a great audiologist. It makes a huge difference.

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My experience has been that the person at Costco does a far, far better job and knows more about what's available than either of the audiologists at the hearing center. I need to use my insurance (and have a referral) to go to the hearing center, but I don't need any of that to go to Costco. For starters, not only are the same aids far less expensive at Costco, but ALL the return trips for adjustments, different ear molds (not custom), etc. are totally FREE.

Because my kidneys don't work well, I have Part F w/Medicare instead of an Advantage plan. Part F coverage means that there is zero charge, not even a co-pay, for any medical visit, including to a hearing center (once you've been referred). Because dialysis costs about $60,000/mo. (!!!), I need to have Part F that pays !00% of the cost in case my kidneys continue to fail. I know that many Advantage plans pay small amounts toward the cost of an aid, but they don't pay all, and you still can have considerable medical costs. My husband wasn't quite old enough for Medicare when he first went on dialysis, so we clearly understand the difference between insurance that pays SOME of medical costs rather than ALL of them. Fortunately, he turned 65 and went on Medicare plus Part F after just three months, and every cent of dialysis and his kidney transplant was paid by insurance.

As for ear molds, the person at Costco who works with me has never suggested custom molds, but, as my hearing worsened, she provided larger molds with smaller vents that deliver more sound into my ear. There was zero charge for that, nor has there been any charge for any of the multiple visits I've made for adjustments. The last adjustment she made, just before things shut down, made it possible for me to listen to music for the first time in almost a year. When I first had this aid in my so-called good left ear, I thought that what I heard was all I'd ever hear, but subsequent adjustments (as my hearing took a huge downward dip due to Meniere's) have shown me that a knowledgeable person can make real improvements in how well an aid works. FWIW, the two audiologists at the hearing center know zip about Meniere's, aren't aware of speech-to-text apps, simply recommend me buying far more expensive aids until I get a CI. In my book, both of them get "D" grades, while the gal at Costco gets at least a B+, if not better.

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