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?

@mamanring

Hello! I am Mary Anne and I suffered Sudden Hearing Loss in my left ear about 20 years ago. The loss was moderate and the hearing I had in my right ear compensated. About 3 years ago, with decrease hearing in my right ear, I got hearing aids. This past February I suffered Sudden Hearing Loss in my right ear. I now have bilateral hearing loss that is moderate to severe. The tinnitus in my right ear is awful. I am trying to cope with this new reality.

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If you live near a University with a medical program, their audiology programs often offer to work with you and tinnitus, there are ways you can learn to manage it that go beyond coping. Talk to your audiologist or ENT.

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@nicolet

Hi There! My 7 year old son has mild hearing loss. I'm having a hard time finding folks in a similar situation to bounce ideas off of. Is there a group you all would refer me to? Thank you!

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@nicolet my daughter started wearing HAs when she was 4. What type of questions do you have? How does your son feel about the HAs? I think my daughter was so young that it was easy initially, but around the time she was in middle school it was tougher. I think that type of thing may be harder for girls though.
JK

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@bonnieinarizona

Hi, I am Bonnie and experienced sudden sensorineural hearing loss (SSHL) about 9 weeks ago. My loss went from mild at high frequencies to moderate-severe (around 60 db) for all frequencies past 1000 Hz. I have tinnitus – and that is my main issue. I have a good Right ear — so I could probably compensate ok (still have ~70% of word understanding at 40 db) if it weren't for the tinnitus. My ENT said I could wait 3 months before getting a hearing aid, but seriously, the tinnitus is so bad that, forgive me, I am not sure I can live with it forever. Any suggestions/experiences with which aids help with tinnitus? Does anyone here have the new Phontac titanium B?

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Bonnie–As many ENTs will tell you, there is no "cure" for tinnitus, but there are treatment approaches that can greatly diminish or even eliminate the distress that so often accompanies tinnitus. I would encourage you to explore an approach pioneered by audiologists at Emory University titled Tinnitus Retraining Therapy. The audiologists are Pawel J. Jastreboff and Jonathan W.P. Hazell. One cautionary note: this is no overnight fix. It requires time and dedication on the part of the patient. But TRT, as it is known, has had an impressive success record with those who go through the process. Good luck.

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Hello, this is Dan. Some of you might know me as HLAAsDan in the HLAA forum.

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@hlaasdan

Hello, this is Dan. Some of you might know me as HLAAsDan in the HLAA forum.

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Welcome @hlaasdan! I'm thrilled that you've migrated here from the HLAA forum. I'm confident that you'll recognize some familiar peers here on Connect and meet new people too. Would you mind telling us a bit about your story, especially for those who don't know you yet?

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@lioness

@ciblue That is wonderful they both are good now My R. Ear is worse then my left I wear H A in both but have had ,still do have TINNITUS Do you have TINNITUS or did you ?

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NO I DON'T HAVE TINNITUS. NEXT FRIDAY I AM HAVING MY EARS CHECKED TO SEE IF THEY HAVE GOT WORSE WHICH I FEEL THEY HAVE. A LOT OF QUESTIONS TO ASK ABOUT HEARING AIDES. AS IT STANDS NOW I WOULD GET NO BENEFIT FROM WEARING THEM WITH WHAT I HAVE.

Liked by TERESA LOGAN

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@quiteachiver75

NO I DON'T HAVE TINNITUS. NEXT FRIDAY I AM HAVING MY EARS CHECKED TO SEE IF THEY HAVE GOT WORSE WHICH I FEEL THEY HAVE. A LOT OF QUESTIONS TO ASK ABOUT HEARING AIDES. AS IT STANDS NOW I WOULD GET NO BENEFIT FROM WEARING THEM WITH WHAT I HAVE.

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@quiteachiver75 THE H.A. I HAVE ONLY QUIET THE TINNITUS NOTHING DOES AWAY WITH IT AND DR.SDONT KNOW WHAT CAUSES IT OR TREATMENT LIKE SO MANY OTHER MEDICAL PROBKEMS

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@hlaasdan

Hello, this is Dan. Some of you might know me as HLAAsDan in the HLAA forum.

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@hlaasdan Hi Dan, I welcome you too. I have been wearing HAs since 2004 and my loss has gotten progressively worse. I hear many great things about HLAA but unfortunately, there are no chapters close to me in NH.
Has the big convention happened yet? Rochester, NY, right? I thought about going but by now getting flights would probably be pretty costly.
JK

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@contentandwell

@hlaasdan Hi Dan, I welcome you too. I have been wearing HAs since 2004 and my loss has gotten progressively worse. I hear many great things about HLAA but unfortunately, there are no chapters close to me in NH.
Has the big convention happened yet? Rochester, NY, right? I thought about going but by now getting flights would probably be pretty costly.
JK

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Flights should not be that bad yet- I am driving 5 hours from Philly. Oh yes it is so worth going. My 3 rd year ( my last maybe because of costs) . It has been an interesting time between Mayo and other sights about termioogy – whether you say hearing impaired ( I do) or hearing challenged, etc. folks as a rule are not patient so I would isolate myself. I do interact with folks on the street – saying hi, giving direction, etc bit no real friends. I am moderate to severe hearing loss( born though not correctly diagnosed till 16. The things I learned is the hard work HLAA is doing in loops/ captions, accessible access by docs( text rather than phone calls, ) we have a long way to go still and we must speak up with our docs by ourself/ chapter. We can do subchslyers in homes or coffee shop ( what i will be doing! Because in groups we have a better voice. There are books out here by Bouton (Shout,/Nd other book-very good) El Deafo-an award winning Gralhicnovel and Deaf Sense by Lodge a true novel about a hearing and hearing impaired spouse. I am trying to write a book about my life. Finances are in my way . Go if you can , at least once. Maybe find other folks from your area. I learned so much. One main thing is that I ambit really alone ; others like me and Thst is important in itself.

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@bookysue

Flights should not be that bad yet- I am driving 5 hours from Philly. Oh yes it is so worth going. My 3 rd year ( my last maybe because of costs) . It has been an interesting time between Mayo and other sights about termioogy – whether you say hearing impaired ( I do) or hearing challenged, etc. folks as a rule are not patient so I would isolate myself. I do interact with folks on the street – saying hi, giving direction, etc bit no real friends. I am moderate to severe hearing loss( born though not correctly diagnosed till 16. The things I learned is the hard work HLAA is doing in loops/ captions, accessible access by docs( text rather than phone calls, ) we have a long way to go still and we must speak up with our docs by ourself/ chapter. We can do subchslyers in homes or coffee shop ( what i will be doing! Because in groups we have a better voice. There are books out here by Bouton (Shout,/Nd other book-very good) El Deafo-an award winning Gralhicnovel and Deaf Sense by Lodge a true novel about a hearing and hearing impaired spouse. I am trying to write a book about my life. Finances are in my way . Go if you can , at least once. Maybe find other folks from your area. I learned so much. One main thing is that I ambit really alone ; others like me and Thst is important in itself.

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@bookysue Thanks for the info, I guess I will look into it. Right now I have a lot of things going on though so it is probably not the best time for me. I just checked out the site and I guess I need to look in more depth. I didn't see what's happening on Saturday or Sunday.

There is no way I would drive myself that far, I tend to fall asleep when in a car! I actually have fallen asleep at the wheel, many years ago, and even now, when I get tired I pull over and take a 15 minute nap to get refreshed.
JK

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@contentandwell Wow that had to be scary Glad you pull over now

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@contentandwell

@bookysue Thanks for the info, I guess I will look into it. Right now I have a lot of things going on though so it is probably not the best time for me. I just checked out the site and I guess I need to look in more depth. I didn't see what's happening on Saturday or Sunday.

There is no way I would drive myself that far, I tend to fall asleep when in a car! I actually have fallen asleep at the wheel, many years ago, and even now, when I get tired I pull over and take a 15 minute nap to get refreshed.
JK

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If you are within 5 hours of me, I can drive you No sense of direction- I love driving. It’s sounds like this would be good for you

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@bookysue

Flights should not be that bad yet- I am driving 5 hours from Philly. Oh yes it is so worth going. My 3 rd year ( my last maybe because of costs) . It has been an interesting time between Mayo and other sights about termioogy – whether you say hearing impaired ( I do) or hearing challenged, etc. folks as a rule are not patient so I would isolate myself. I do interact with folks on the street – saying hi, giving direction, etc bit no real friends. I am moderate to severe hearing loss( born though not correctly diagnosed till 16. The things I learned is the hard work HLAA is doing in loops/ captions, accessible access by docs( text rather than phone calls, ) we have a long way to go still and we must speak up with our docs by ourself/ chapter. We can do subchslyers in homes or coffee shop ( what i will be doing! Because in groups we have a better voice. There are books out here by Bouton (Shout,/Nd other book-very good) El Deafo-an award winning Gralhicnovel and Deaf Sense by Lodge a true novel about a hearing and hearing impaired spouse. I am trying to write a book about my life. Finances are in my way . Go if you can , at least once. Maybe find other folks from your area. I learned so much. One main thing is that I ambit really alone ; others like me and Thst is important in itself.

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@bookysue Will you post some about the meeting as my Hearing loss is severe in my one ear moderate in other and TINNITUS which doesn't help I'd appreciate the information you may get

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@lioness

@bookysue Will you post some about the meeting as my Hearing loss is severe in my one ear moderate in other and TINNITUS which doesn't help I'd appreciate the information you may get

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No problem . I would have done that anyway. The conference is in June ( June 18 through 24 th). They have rates for the exhibit room ( Harris is always there- longest running carrier of products for the hearing impaired- lights, etc)
More and more areas are doing this. They are giving away and installing free hearing impaired smoke detectors. Make sure you take advantage. Also free captioned phones .

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@bookysue

No problem . I would have done that anyway. The conference is in June ( June 18 through 24 th). They have rates for the exhibit room ( Harris is always there- longest running carrier of products for the hearing impaired- lights, etc)
More and more areas are doing this. They are giving away and installing free hearing impaired smoke detectors. Make sure you take advantage. Also free captioned phones .

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@bookysue Thanks so much I live in California I only have a cell phone but it has a speaker I use .

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