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Hearing Loss: Come introduce yourself and connect with others

Posted by Colleen Young, Connect Director @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?

Interested in more discussions like this? Go to the Hearing Loss Support Group.

wassy2019 | @wassy2019 | Mar 3, 2019
In reply to @davekoh "I am a 72 year old man with a profound hearing loss in one ear and..." + (show)
@davekoh

I am a 72 year old man with a profound hearing loss in one ear and a total loss in the other. I wear a Resound aid in the one ear. I function okay with family as they speak loudly and I lip read somewhat. But I am basically deaf outside the house.

Other than that I function predominantly by the written word...captioned tv and caption apps for Cell and land phones. I tried tv streaming directly to the aid, but it was not of any major benefit. I am now looking into speech to text apps.

So I am basically just reading posts, looking for any ideas I can use.
Thanks.

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have you looked into the possibility of a cochlear implant for the ear with total loss? insurance may cover it since you have a profound loss in your other ear

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JK | @contentandwell | Mar 3, 2019
In reply to @robinraig "I think we should start a topic about this. My landline portable is ATT Cordless answering..." + (show)
@robinraig

I think we should start a topic about this. My landline portable is ATT Cordless answering system crl32202 but it is not HA compatible. My other landline phone is a ATT trimline. Also not HA compatible. Every phone I tried that was listed as HA compatible just emitted a buzz whenever I set my HA to the T coil feature.

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@robinraig My hearing aids do not have a telecoil, I would be looking for a landline phone that is Bluetooth compatible. Is it possible that the ones you listed might be compatible with Bluetooth but not with a telecoil?

@davekoh I agree with the others, a cochlear implant may be the answer for you. Your problem is more severe than mine, but I can definitely sympathize. I know how frustrating and isolating it can be to not be able to hear what is being said.
JK

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asklar02492 | @asklar02492 | Mar 4, 2019

Hi. I'm 70 years old and hard of hearing in both ears, with a more severe loss than most people my age. My loss became noticeable at about age 50. I've had hearing aids since then, and don't think I could get along without them. I'm looking forward to having an online support group!

I've never been very aggressive about making sure my hearing aides were correctly fitted - I always assumed the audiologists knew what they were doing and the aids seemed to work well enough. But lately - maybe because the aids are more complex, or because my hearing is worse - the aids seem to need a lot of individualized adjustment. I have difficulty figuring out what's wrong and communicating it to the audiologist. I've been making frequent appointments to try to get them just right, but I'm worried that I'm wearing out my welcome. It's very frustrating - sometimes the adjustments are improvements, sometimes they make things worse.

I'm wondering if anyone has tips about communicating what their hearing problems are. I try to figure out whether it's with male or female voices, and to come up with a few words I've had a lot of trouble hearing. Is there a way to make finer distinctions? Is there some kind of hearing test I could do over the internet? Should the audiologists be testing me after each adjustment? I'd really appreciate some feedback. Thanks!

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1 reply
asklar02492 | @asklar02492 | Mar 4, 2019
In reply to @robinraig "I think we should start a topic about this. My landline portable is ATT Cordless answering..." + (show)
@robinraig

I think we should start a topic about this. My landline portable is ATT Cordless answering system crl32202 but it is not HA compatible. My other landline phone is a ATT trimline. Also not HA compatible. Every phone I tried that was listed as HA compatible just emitted a buzz whenever I set my HA to the T coil feature.

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I was never very satisfied with my cordless phones. Last year my audiologist signed me up with Caption Call which in this area (western Massachusetts) provides and installs a free landline phone with a free captioning service. I only pay the monthly cost for a regular phone line. The phone works well - it's easy to adjust the volume, the captioning comes in handy, and it doesn't seem to cause problems with my HAs. It's not cordless though.

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asklar02492 | @asklar02492 | Mar 5, 2019
In reply to @christinahaire "Hello, my name is Christina. I began losing my hearing in my late 50’s. Now am..." + (show)
@christinahaire

Hello, my name is Christina. I began losing my hearing in my late 50’s. Now am 74. It got progressively worse and I believe it may have a hereditary component. My paternal grandparents were deaf, only one congenitally, and my father began losing his hearing in his 40s. And deaf by my age. I had about 10% hearing and have felt truly handicapped. Then decided to explore Cochlear Implant. I had the CI surgery 3 weeks ago in my right ear. Now “deafer” since only left eat with HA. But I will be connected to the CI next week. And can let you know my progress if interested.

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I'm definitely interested to know how your CI progresses. I think your hearing loss may be similar to mine (noticeable age 50, severe by 70, father and grandmother completely deaf in their 80s). I like to hope that I'll be able to hear to some degree as I get older. So I hope it goes well for you! Keep me posted.

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asklar02492 | @asklar02492 | Mar 5, 2019
In reply to @tulip "Yes, the CI is like a BTE HA, but bigger. It is bigger because there is..." + (show)
@tulip

Yes, the CI is like a BTE HA, but bigger. It is bigger because there is a lot more computing power housed in those processors. I don't care if people see it and in many ways, it's easier if they do so they know you have hearing loss, but everyone is different with how they feel about showing off their CI's. The processor comes off and you shower and wash your hair like you normally do. At first the sounds are strange, robotic, but that gets better with time. Everything sounds like it did before I lost my hearing but at first, everyone sounded like Minnie Mouse. It was actually pretty funny to listen to.

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Thanks so much for your February 9 post. I'm not ready for cochlear yet, but it gives me hope that I'll someday I'll be able to hear pretty well if not perfectly. Actually any hearing is better than no hearing!

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asklar02492 | @asklar02492 | Mar 5, 2019
In reply to @chunwa "I am a 70-year old man with moderate hearing loss in both ears. Sensorineural loss. Wear..." + (show)
@chunwa

I am a 70-year old man with moderate hearing loss in both ears. Sensorineural loss. Wear two digital hearing aids that are one year old (Phonak). I am practically "deaf" when I don't wear them. Therefore, that and a streamer are what keep me connected to the world. I have trouble making out conversations around a banquet table, and at parties in general. I depend on CC on TV to help me with the language. I didn't wear hearing aids until late in life because of denial and stigma. I also didn't get aural rehabilitation like sign language, etc. Now I find ASL and lip-reading very difficult and wearisome. However, I am attending two hard of hearing support groups to make friends and learn coping skills.

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Thanks for your post. I'm about the same age, with my bilateral hearing loss moderate to severe. My reaction to the whole situation has been similar to yours. I've thought about ASL, and taken one online course, but my progress at age 70 is pretty slow. So I'm trying to connect with hearing support groups too. Keep us posted on how your journey goes!

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asklar02492 | @asklar02492 | Mar 5, 2019
In reply to @judymartin "Thanks, @cjspizz. As one of the moderators on the HLAA Message Board, I was asked to..." + (show)
@judymartin

Thanks, @cjspizz. As one of the moderators on the HLAA Message Board, I was asked to post information regarding this Forum. I'm interested in seeing how many come here because the Hearing Loss Association of America.

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I too just joined because of HLAA notice. This forum is really informative! Thanks to everyoneL!

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engineer | @engineer | Mar 5, 2019
In reply to @colleenyoung "@cobweb thanks for getting the introductions started in the Hearing Loss group on Connect. I'd also..." + (show)
@colleenyoung

@cobweb thanks for getting the introductions started in the Hearing Loss group on Connect. I'd also like to invite fellow members to the new group - @dstell @johnnyb7 @ccubed @mtnyankee @conniekay @cynaburst @squaredancer @contentandwell @joechauhan777 @morninglory @trishanna @estrada53 @phillipflippo @upartist @sfskater1958. What is your hearing loss experience?

Cobweb, how did your ear drums get punctured as a child? How long have you been wearing hearing aids?

You ask about hearing aids that work. @dkeefe started a discussion about hearing aids here:
> Hearing aids https://connect.mayoclinic.org/discussion/hearing-aids-1/
It would be great to get more recommendations and people's experiences in that discussion thread.

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Dear Colleen: I just recently connected to the hearing loss group. Today I sent a reply to Jamie Olson a Mayo moderator. My questions are about testing and when to see an audiologist and when to see an otologist. Also if Mayo has a recommended clinic in Indianapolis that has both an audiologist and an otologist. I will be looking for a response from Jamie or perhaps from you.

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1 reply
davekoh | @davekoh | Mar 5, 2019

dumb question please,
digests come to my inbox but replies come to spam. How do i correct that please?

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