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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.

sharieberts | @sharieberts | Apr 16, 2019

Hi everyone! My name is Shari and I have a genetic adult-onset moderate hearing loss in both ears. I write a weekly blog about my ups and down living with hearing loss and share tips for living your best life despite the challenges of hearing loss. Please check it out if you are interested. http://www.livingwithhearingloss.com. I am also on the board of HLAA and a member of the NYC chapter. Thanks to Mayo/Ida/HLAA for providing this forum.

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2 replies
dstell | @dstell | Apr 16, 2019
In reply to @sharieberts "Hi everyone! My name is Shari and I have a genetic adult-onset moderate hearing loss in..." + (show)
@sharieberts

Hi everyone! My name is Shari and I have a genetic adult-onset moderate hearing loss in both ears. I write a weekly blog about my ups and down living with hearing loss and share tips for living your best life despite the challenges of hearing loss. Please check it out if you are interested. http://www.livingwithhearingloss.com. I am also on the board of HLAA and a member of the NYC chapter. Thanks to Mayo/Ida/HLAA for providing this forum.

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Welcome Shari! I have been following your blog for some time. I enjoy your insight.

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jfobes | @jfobes | Apr 16, 2019
In reply to @contentandwell "Hi, @jfobes and welcome to Connect. Your problem really is a curious one. The ringing in..." + (show)
@contentandwell

Hi, @jfobes and welcome to Connect.
Your problem really is a curious one. The ringing in your ears, I presume is tinnitus, a fairly common problem. The fact that your hearing clears up and has clarity is pretty odd though. Is it possible that you have mild TMJ as @parus mentioned? I would rule out a sinus infection since it's been for so long. I suspect you have done some serious googling about this and not come up with anything.
Is there a large medical center, preferably a teaching center, anywhere close to you? I would think they would be most apt to be able to figure this out if anyone can. I am sure it is beyond the ken of most regular audiologists. I live in southern NH so there is Mass Eye and Ear about 55 miles down the road but there are many all over. I just googled this myself and there is a list at the US News website:
https://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat

Hopefully one of those is close enough to you so you will be able to have a consultation there.

I am very curious about what they have to say if you do go somewhere one of these so I hope you get back to us.
JK

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JK I had a miserable experience with a new to me ENT. After spending the $575 to the have the mandatory hearing test to gain access to the ENT. His highly educated diagnoses "you have bad ears, some people are born with bad knees you got bad ears" He did not listen to any of my concerns nor address any of my questions. I have filed a complaint with provider and am waiting to hear back from them. Oh and indecently about 10 days before my appointment I pretty much lost my left ear! I can only hear treble no bass or low tones at all!!! He had no idea why that would be, and of course my ears looked "perfect" and according to the testing my e tubes are working perfectly normal. I asked why do my ear feel plugged and voices sound muffled? "you got bad ears"

This is so frustrating! I'm left handed thus use my left ear for the phone. I can't hear anyone in that ear and switching is proving to be quite challenging to say the least!!!!!!

I may follow up with the University of Wisconsin medical school for advice. I am waiting to hear back from the friend of a friend that is currently in school to become an audiologist. Hope he can mention my condition to an educator and if nothing else raise an eyebrow?

FYI - the chewing gum made my jaw sore from chewing, did nothing for my ears!

REPLY
3 replies
capausz | @capausz | Apr 16, 2019
In reply to @jfobes "JK I had a miserable experience with a new to me ENT. After spending the $575..." + (show)
@jfobes

JK I had a miserable experience with a new to me ENT. After spending the $575 to the have the mandatory hearing test to gain access to the ENT. His highly educated diagnoses "you have bad ears, some people are born with bad knees you got bad ears" He did not listen to any of my concerns nor address any of my questions. I have filed a complaint with provider and am waiting to hear back from them. Oh and indecently about 10 days before my appointment I pretty much lost my left ear! I can only hear treble no bass or low tones at all!!! He had no idea why that would be, and of course my ears looked "perfect" and according to the testing my e tubes are working perfectly normal. I asked why do my ear feel plugged and voices sound muffled? "you got bad ears"

This is so frustrating! I'm left handed thus use my left ear for the phone. I can't hear anyone in that ear and switching is proving to be quite challenging to say the least!!!!!!

I may follow up with the University of Wisconsin medical school for advice. I am waiting to hear back from the friend of a friend that is currently in school to become an audiologist. Hope he can mention my condition to an educator and if nothing else raise an eyebrow?

FYI - the chewing gum made my jaw sore from chewing, did nothing for my ears!

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@jfobes, your ENT’s response and behavior was outrageous, unprofessional, and so disappointing. I commend you for challenging his fee with your insurance company. Too often, doctors are permitted to get away with unsatisfactory work.

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JK | @contentandwell | Apr 16, 2019
In reply to @jfobes "JK I had a miserable experience with a new to me ENT. After spending the $575..." + (show)
@jfobes

JK I had a miserable experience with a new to me ENT. After spending the $575 to the have the mandatory hearing test to gain access to the ENT. His highly educated diagnoses "you have bad ears, some people are born with bad knees you got bad ears" He did not listen to any of my concerns nor address any of my questions. I have filed a complaint with provider and am waiting to hear back from them. Oh and indecently about 10 days before my appointment I pretty much lost my left ear! I can only hear treble no bass or low tones at all!!! He had no idea why that would be, and of course my ears looked "perfect" and according to the testing my e tubes are working perfectly normal. I asked why do my ear feel plugged and voices sound muffled? "you got bad ears"

This is so frustrating! I'm left handed thus use my left ear for the phone. I can't hear anyone in that ear and switching is proving to be quite challenging to say the least!!!!!!

I may follow up with the University of Wisconsin medical school for advice. I am waiting to hear back from the friend of a friend that is currently in school to become an audiologist. Hope he can mention my condition to an educator and if nothing else raise an eyebrow?

FYI - the chewing gum made my jaw sore from chewing, did nothing for my ears!

Jump to this post

@jfobes I am so sorry for what you have gone through, how frustrated you must be. I agree with @capausz, that is outrageous.
I presume you must live in the Wisconsin area. If you were close to NYC I would recommend an excellent audiologist there who is fairly renown I believe. I hope you do find someone who can give you the help you need and deserve. Some medical professionals are hopeless unfortunately and it sounds as if that audiologist is one of them.

The rating site healthgrades.com does have audiologists on it, you might check there. I never have any faith in them unless there are quite a few reviews though. I just checked my own audiologist and she has one, five stars, but if I was looking for someone I would probably try to find someone with many more than one review.

I hope that you are able to get some help from the person who is in school to become an audiologist. I definitely would, as I said before though, go to a major medical center. Most have audiology departments I believe.
JK

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Mentor
Julie, Volunteer Mentor | @julieo4 | Apr 16, 2019
In reply to @jfobes "JK I had a miserable experience with a new to me ENT. After spending the $575..." + (show)
@jfobes

JK I had a miserable experience with a new to me ENT. After spending the $575 to the have the mandatory hearing test to gain access to the ENT. His highly educated diagnoses "you have bad ears, some people are born with bad knees you got bad ears" He did not listen to any of my concerns nor address any of my questions. I have filed a complaint with provider and am waiting to hear back from them. Oh and indecently about 10 days before my appointment I pretty much lost my left ear! I can only hear treble no bass or low tones at all!!! He had no idea why that would be, and of course my ears looked "perfect" and according to the testing my e tubes are working perfectly normal. I asked why do my ear feel plugged and voices sound muffled? "you got bad ears"

This is so frustrating! I'm left handed thus use my left ear for the phone. I can't hear anyone in that ear and switching is proving to be quite challenging to say the least!!!!!!

I may follow up with the University of Wisconsin medical school for advice. I am waiting to hear back from the friend of a friend that is currently in school to become an audiologist. Hope he can mention my condition to an educator and if nothing else raise an eyebrow?

FYI - the chewing gum made my jaw sore from chewing, did nothing for my ears!

Jump to this post

I feel your pain as it's similar to experiences I had many years ago. I was given no hope for help of any kind for the adult onset hearing loss I had been diagnosed with in my 20s. "Bad ears; learn to live with it." If you live in Wisconsin, as your post suggests, I encourage you to get in touch with one of the HLAA chapters in that state. There are active chapters in Appleton/Fox Valley, Madison and Milwaukee. I believe chapters are starting to develop in southwestern Wisconsin and in Door County. People who participate in HLAA will share information about their experiences. They don't promote products or providers, but they can certainly share their positive (and negative) experiences with them. It really helps to talk to other people with hearing loss in an open forum. Check out the HLAA-Wisconsin website at hlaawi.org HLAA-WI is holding a state conference next fall that might interest you. Regardless, don't take this kind of treatment as 'the answer'. There is help for poor hearing and 'bad ears'. You deserve to find a provider, ENT, Audiologist, etc. who will work with you to find it. There are many excellent providers in Wisconsin.

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JK | @contentandwell | Apr 16, 2019
In reply to @sharieberts "Hi everyone! My name is Shari and I have a genetic adult-onset moderate hearing loss in..." + (show)
@sharieberts

Hi everyone! My name is Shari and I have a genetic adult-onset moderate hearing loss in both ears. I write a weekly blog about my ups and down living with hearing loss and share tips for living your best life despite the challenges of hearing loss. Please check it out if you are interested. http://www.livingwithhearingloss.com. I am also on the board of HLAA and a member of the NYC chapter. Thanks to Mayo/Ida/HLAA for providing this forum.

Jump to this post

@sharieberts Thanks for sharing this, Sharie. It's really excellent. I sent the link to my husband and kids, hopefully they will understand what I am going through a little bit better. My husband seems to be the one who just cannot learn to accommodate my problem. He speaks in a low voice and almost every time he says anything I have to ask him to repeat it. It's so frustrating, and tiring. My kids are better about it, thankfully. Sometimes with my husband I just don't bother asking him to repeat, hoping it's not anything important.
JK

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lioness | @lioness | Apr 16, 2019

@gingerw @contentandwell @hopeful33250 I went to ear Dr the ear exercises he gave me worked No more dizziness or balance problems So that I'd one down now May 1new rheumatologist I @parus. Didn't have to use the barbells haha

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1 reply
JK | @contentandwell | Apr 16, 2019
In reply to @lioness "@gingerw @contentandwell @hopeful33250 I went to ear Dr the ear exercises he gave me worked No..." + (show)
@lioness

@gingerw @contentandwell @hopeful33250 I went to ear Dr the ear exercises he gave me worked No more dizziness or balance problems So that I'd one down now May 1new rheumatologist I @parus. Didn't have to use the barbells haha

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@lioness That's great! Vertigo generally does go away after a while but it can recur too so be aware of that. My daughter has brief episodes of it recurring. My sister does not.
JK

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lioness | @lioness | Apr 17, 2019

@contentandwell Thanks I,I'm remember that It it does Dr told me to see if I need to do the exercises

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