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.

@lindleys

So, yesterday was a busy day. I was referred to a specialist, Dr Kim, an oncologist at the Northwest Ear Intitute, so I met with him. He confirmed the treatment course my ENT, Dr Liu has me on is conventional. He seemed to suggest maybe even a little more than needed. One of my ENT recommendations is a series of Hyperbaric Oxygen Chamber treatments, that could cost upwards of $80,000 if my insurance doesn't cover it. The Specialist didn't feel it was necessary or supported by enough research, but I'm going to do it anyway, providing we get pre-approval from my insurance (which from calls to insurance appears to be covered). It can't hurt.

Dr Kim also mentioned now that I have profound hearing loss in both ears, I'm a candidate for Cochlear Implants. But apparently if I wait to see what happens with my left ear and I get hearing back, then I may no longer qualify. So I'm going to setup the test to confirm I qualify for an implant on my right ear. He wants to wait to see what happens with the other. If I get some hearing back in my left ear, I'll wear a hearing aid. If I don't, I'll get an implant in the left as well. I have an MRI scheduled for Monday, along with the Hyperbaric O2 evaluation. Long day figuring out insurance benefits and getting proper authorizations.

Thanks to your replys I now have a text to speech app on my phone, that converts what people say to text in real time, and I have a new phone service that works over the phone to convert speech to text. It's clunky and will take getting used to, but it will work. It only works on wifi though, so it's not ideal. Nausea is gone finally, providing i don't move too fast.

I'm excited about the prospect of Cochlear Implants. It sounds exactly like what I need to continue on in my current job - maybe even better than having only one working ear with a hearing aid! Dr. Kim offers both Cochlear and Advanced Bionic. Any thoughts on either or links to previous posts? (I apologize if this is a played out question like what oil or tires are best on a motorcycle) I haven't had time yet to search the entire forum. - EDIT: nevermind about CI link. Joyce hooked me up with a link to the cochlear implant journal forum. Thank you!

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@lindleys , I’m very sorry to hear about your sudden hearing loss. I also suffered this in my left ear in December of 2019 due to a sinus infection. After oral and injected steroids did not work I also went through 15 hyperbaric oxygen treatments. I saw the post about the pressure and thought I would share my experience. During these procedures they are concerned about your ability to equalize the pressure in you ear during pressurization. At least with the group that did my treatment, they did start out slowly with the first treatment and told me to tell them if I was able to pop my ear to equalize, if I could not they said the would send me to the ENT to get a tube implanted. Fortunately I was able to pop my ear and so was able to do the treatments without a tube. Unfortunately the result of my treatments were not spectacular. The ENT said I had a “slight but not significant improvement.” I think it was about a 5 decibel improvement. Good luck with your treatments and I hope the results of yours are better. If you have any questions about the hyperbaric O2 treatments let me know. My insurance also said they would cover the treatments after I meet the deductible. I don’t have a lot of trust in the health insurance system but remain hopeful. My treatments were last month so I have not seen any of the big bills or EOBs come in yet.

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@steveh52

@lindleys , I’m very sorry to hear about your sudden hearing loss. I also suffered this in my left ear in December of 2019 due to a sinus infection. After oral and injected steroids did not work I also went through 15 hyperbaric oxygen treatments. I saw the post about the pressure and thought I would share my experience. During these procedures they are concerned about your ability to equalize the pressure in you ear during pressurization. At least with the group that did my treatment, they did start out slowly with the first treatment and told me to tell them if I was able to pop my ear to equalize, if I could not they said the would send me to the ENT to get a tube implanted. Fortunately I was able to pop my ear and so was able to do the treatments without a tube. Unfortunately the result of my treatments were not spectacular. The ENT said I had a “slight but not significant improvement.” I think it was about a 5 decibel improvement. Good luck with your treatments and I hope the results of yours are better. If you have any questions about the hyperbaric O2 treatments let me know. My insurance also said they would cover the treatments after I meet the deductible. I don’t have a lot of trust in the health insurance system but remain hopeful. My treatments were last month so I have not seen any of the big bills or EOBs come in yet.

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For those of us old enough for Medicare, this is one reason to avoid any of the many Advantage plans, that promise much, but pay only a percentage. In addition, the "benefits" for vision and hearing are very small, almost token amounts. Yes, some Advantage plans have no premium each month, and Part F or other more robust plans cost something. However, we've both had Part F ever since my husband became old enough for Medicare, and we still pay less than $200 each for both the Part F medical plan plus a separate pharmacy plan. I'm older, and we had a group plan for our own tiny company, so I couldn't opt for Medicare until he was old enough as the group plan required a minimum of two people. That meant that initially I couldn't have a Part F plan, as I was long past the 60-day window to opt for it. However, we were planning to move to our weekend place on the coast, so our broker switched my Advantage plan to one that wouldn't be available in this county, which gave me 60 days to opt for a Part F plan.

There was no question that my husband needed a Part F plan, as he was on dialysis not long before he turned 65, and was already on the list for a transplant. Our own company insurance paid 80% of dialysis, which is $60,000/month...leaving a substantial amount for us to pay, in addition to the $2,000 monthly premium. As soon as he was 65 and opted for Plan F coverage, we owed not a penny for monthly dialysis. Two years later, when a kidney became available, we paid absolutely nothing for either the surgery or hospitalization, a savings to us of over a half million dollars! That less than $200 for Part F plus pharmacy looked very good! When I was able to opt for Part F when we moved here, I wondered if I was indulging in overkill, but six months later I learned that my kidneys were already operating a less than optimum, meaning, at best, quarterly appts. with $1,000 or more of labs with the kidney doc. So far, I haven't collected a dime on my pharmacy plan, but, you can't opt for one when you need it: you must make the decision at the time you opt for Part F. Since I've had cancer and know that even "simple" Stage 1 cancer results in a total cost of around a quarter million, I feel safe having good coverage. And, when I say you pay nothing, I mean exactly that: no copays, nothing, for any medical appts. For the first time in our lives, we have no need to worry about medical costs. Including the roughly $400 deducted from our SS checks, we're paying less than $800 every month for peace of mind and, many months, far less than we'd pay with Advantage plans.

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I'm sorry..... this is off topic but I did not know how else to put it out there. Today on MSNBC there is a short article called "How everyday communication barriers for the deaf are intensified by face masks". l am in favor of the masks but am having a terrible time understanding employees in grocery stores, Home Depot and so on when trying to get help. I never realized before how much I relied on the extra cues that people's faces and lips give us.

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@joyces

For those of us old enough for Medicare, this is one reason to avoid any of the many Advantage plans, that promise much, but pay only a percentage. In addition, the "benefits" for vision and hearing are very small, almost token amounts. Yes, some Advantage plans have no premium each month, and Part F or other more robust plans cost something. However, we've both had Part F ever since my husband became old enough for Medicare, and we still pay less than $200 each for both the Part F medical plan plus a separate pharmacy plan. I'm older, and we had a group plan for our own tiny company, so I couldn't opt for Medicare until he was old enough as the group plan required a minimum of two people. That meant that initially I couldn't have a Part F plan, as I was long past the 60-day window to opt for it. However, we were planning to move to our weekend place on the coast, so our broker switched my Advantage plan to one that wouldn't be available in this county, which gave me 60 days to opt for a Part F plan.

There was no question that my husband needed a Part F plan, as he was on dialysis not long before he turned 65, and was already on the list for a transplant. Our own company insurance paid 80% of dialysis, which is $60,000/month...leaving a substantial amount for us to pay, in addition to the $2,000 monthly premium. As soon as he was 65 and opted for Plan F coverage, we owed not a penny for monthly dialysis. Two years later, when a kidney became available, we paid absolutely nothing for either the surgery or hospitalization, a savings to us of over a half million dollars! That less than $200 for Part F plus pharmacy looked very good! When I was able to opt for Part F when we moved here, I wondered if I was indulging in overkill, but six months later I learned that my kidneys were already operating a less than optimum, meaning, at best, quarterly appts. with $1,000 or more of labs with the kidney doc. So far, I haven't collected a dime on my pharmacy plan, but, you can't opt for one when you need it: you must make the decision at the time you opt for Part F. Since I've had cancer and know that even "simple" Stage 1 cancer results in a total cost of around a quarter million, I feel safe having good coverage. And, when I say you pay nothing, I mean exactly that: no copays, nothing, for any medical appts. For the first time in our lives, we have no need to worry about medical costs. Including the roughly $400 deducted from our SS checks, we're paying less than $800 every month for peace of mind and, many months, far less than we'd pay with Advantage plans.

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I'm sorry..... this is really off topic but I did not know how else to put it out there. Today on MSNBC there is a short article under breaking news entitled "How everyday communication barriers for the deaf are intensified by face masks" I am in total agreement with wearing the masks but have been having a really hard time understanding employees of grocery stores, Home Depot, etc. I guess I never realized before how dependent I am on the extra cues provided by watching people's facial expressions and lips. Today I almost bought the wrong paint because I just didn't get what the clerk was trying to tell me. Came home frustrated and very tired. Sometimes It is such an effort just to get through a day when you have to communicate with a lot of people. The article raises awareness that it is a big issue for a lot of us and I hope places will find a way to make it easier. I think I will take a pad and pencil with me from now on so I can write my questions down if needed. I'm sure this is a problem for all of us who don't hear well and was glad to see the article. Just wanted to let all of you know about the article.

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@judyca7

I'm sorry..... this is really off topic but I did not know how else to put it out there. Today on MSNBC there is a short article under breaking news entitled "How everyday communication barriers for the deaf are intensified by face masks" I am in total agreement with wearing the masks but have been having a really hard time understanding employees of grocery stores, Home Depot, etc. I guess I never realized before how dependent I am on the extra cues provided by watching people's facial expressions and lips. Today I almost bought the wrong paint because I just didn't get what the clerk was trying to tell me. Came home frustrated and very tired. Sometimes It is such an effort just to get through a day when you have to communicate with a lot of people. The article raises awareness that it is a big issue for a lot of us and I hope places will find a way to make it easier. I think I will take a pad and pencil with me from now on so I can write my questions down if needed. I'm sure this is a problem for all of us who don't hear well and was glad to see the article. Just wanted to let all of you know about the article.

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Thank you for sharing this. I'm sorry I missed it. HLAA held a webinar on this topic last week. It is posted on the website for review if anyone would like to see it. Lots of good questions were asked. Everyone reads lips or 'speechreads', even people who hear well. But, for people with hearing loss it's a huge problem. We may not have ever had training on lip reading, but we learn by osmosis. It's how we cope. There are several speech to text apps that may help you in tricky situations. Live Transcribe works on Android smart phones. For iPhones there is Otter io. I used Otter the other day at a doctor's appointment and it worked well. When we use these devices it also educates those whom we want or need to hear that technology matters for us. It's a chance to share information. I've often found that when I 'go public' with my hearing loss by using visible add on technology that people are fascinated. More often than not they will tell me they know someone who needs to know about it. This mask issue is not going to go away soon, so we have to find ways to help ourselves. We are definitely all in this together. Check out that HLAA webinar at http://www.hearingloss.org

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@judyca7

I'm sorry..... this is off topic but I did not know how else to put it out there. Today on MSNBC there is a short article called "How everyday communication barriers for the deaf are intensified by face masks". l am in favor of the masks but am having a terrible time understanding employees in grocery stores, Home Depot and so on when trying to get help. I never realized before how much I relied on the extra cues that people's faces and lips give us.

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Ditto for me - my wife and me talked about this just today. She has great hearing and is having troubles at times. Seems to be more prevalent with females with mask.

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@judyca7

I'm sorry..... this is really off topic but I did not know how else to put it out there. Today on MSNBC there is a short article under breaking news entitled "How everyday communication barriers for the deaf are intensified by face masks" I am in total agreement with wearing the masks but have been having a really hard time understanding employees of grocery stores, Home Depot, etc. I guess I never realized before how dependent I am on the extra cues provided by watching people's facial expressions and lips. Today I almost bought the wrong paint because I just didn't get what the clerk was trying to tell me. Came home frustrated and very tired. Sometimes It is such an effort just to get through a day when you have to communicate with a lot of people. The article raises awareness that it is a big issue for a lot of us and I hope places will find a way to make it easier. I think I will take a pad and pencil with me from now on so I can write my questions down if needed. I'm sure this is a problem for all of us who don't hear well and was glad to see the article. Just wanted to let all of you know about the article.

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@judyca7 This must definitely be a problem. Taking a pad and pencil is a great idea.
I have not experienced it yet simply because I have not been in any stores since this all started, we are isolating at home and having groceries delivered.

What I have so much trouble with is when I have to call a customer service department on the phone. That gets more complicated by the fact that many people in those jobs have accents. By the time I am done I am sometimes in tears.
JK

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@contentandwell

@judyca7 This must definitely be a problem. Taking a pad and pencil is a great idea.
I have not experienced it yet simply because I have not been in any stores since this all started, we are isolating at home and having groceries delivered.

What I have so much trouble with is when I have to call a customer service department on the phone. That gets more complicated by the fact that many people in those jobs have accents. By the time I am done I am sometimes in tears.
JK

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I find it most frustrating that e-mail cannot be used for any medical things...setting appts. (although a few places have a way to do this via their website now), asking questions when looking for specific help (like vestibular rehab specialists), lack of being able to get clearly understandable info between appts. It's especially frustrating when dealing with hearing centers. The apparent reason behind all of this is that, since e-mail really isn't private but can be viewed by hackers, medical people fear lawsuits. Somewhere, decades ago, we somehow decided to follow the wrong path as far as healthcare is concerned and it became the norm to threaten to sue when something doesn't go the way we had hoped. Very sad.

On the plus side, e-mail is a true godsend! I can't begin to list how many times receiving a detailed e-mail has undoubtedly saved me from appearing at the wrong time, confusing a detail or instruction about a job I'm working on, etc. It also allows me to "converse" with family and friends without the difficulties and confusion of both phone and in-person conversations.

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@joyces

I find it most frustrating that e-mail cannot be used for any medical things...setting appts. (although a few places have a way to do this via their website now), asking questions when looking for specific help (like vestibular rehab specialists), lack of being able to get clearly understandable info between appts. It's especially frustrating when dealing with hearing centers. The apparent reason behind all of this is that, since e-mail really isn't private but can be viewed by hackers, medical people fear lawsuits. Somewhere, decades ago, we somehow decided to follow the wrong path as far as healthcare is concerned and it became the norm to threaten to sue when something doesn't go the way we had hoped. Very sad.

On the plus side, e-mail is a true godsend! I can't begin to list how many times receiving a detailed e-mail has undoubtedly saved me from appearing at the wrong time, confusing a detail or instruction about a job I'm working on, etc. It also allows me to "converse" with family and friends without the difficulties and confusion of both phone and in-person conversations.

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Most medical centers now have Patient Portals, what are what I think you are referring to as their websites.
I communicate with all my doctors and my audiologist through the portal. I make appointments, see test results, can address specific questions to the doctor or staff.
It’s a question of patient privacy. Regular email is not secure. Email through the portal is. It’s a huge benefit to patients in general — all the information is there for you to refer to at any time - and it’s an even bigger benefit to people with hearing loss.
It does take a little work to figure it all out - passwords and so on - but once you get it set up it’s very easy.

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I had mild hearing loss starting as a child and into middle age. At age 50 I started wearing hearing aids and adapted quite well to them. I have had a number of brands including Widex, Resound and Oticon. About 6 years ago I switched from in the ear to behind the ear hearing aids. The last in the ear pair I had were Oticon. These were followed by Oticon behind the ear and I was unhappy with them for the entire three years. I simply did not hear, whatever adjustments were made. I am now at the point of having to decide whether to accept new Oticon S1 (major problem of noise in noise) or to reject the Oticon and find a replacement. I am hoping participating in Mayo Clinic Connect will help me make this decision..

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