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.

@gencha

Hi,

I did view the video. The laughing part, I am guessing , is a poor attempt to gloss over the effects of hearing loss or maybe to show what a good relationship they have. I guess they want people to say…yeah my mom is like this. It implies only older people lose their hearing. So many of these so called customers are actors.

I looked over Miracle Ears long history of exaggerated claims and many many lawsuits regarding the product itself and customer service. They do such a disservice to individuals with hearing loss and their families. Most of us know that hearing aids are just that…aids…and not the miracle this company and others like it claim. I think they have deviated from the honest intention of it’s original founder and have marketed their way into a considerable fortune . People new to hearing loss or the general population have no clue what is involved in hearing loss. These companies perpetuate the idea that hearing aids should be invisible or that wearing them makes you look old.

Beware of any manufacturer who make revolutionary promises. Miracle Ear has paid fines and settled lawsuits over the years. If you can, you can object to the commercial. It’s one of so many of their advertisements that even if they pull it, it won’t make a difference. I am not a defeatist by any means but the only way to combat these companies is not to buy their products. This is a massive company. The best advice I can give is to advocate on your own and try to make people aware of what hearing loss is like for you. Learn all you can about hearing loss and be an educated consumer and flaunt those new aids…don’t hide them. Open up a new conversation with anyone you interact with on a daily basis.

I could go on forever but you know all this….so happy you spotted that ad and hopefully you are not the only one who found it offensive or just not right.

FL Mary

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@tinae

Hi Julie, sorry I put Julia before I was text talking. I apologize for that. I have not done any research yet. I do have my CI evaluation set up for August 18 at which time they will test me to see if I qualify and then they’ll introduce me to the three current manufactures. I am told that they all have different technology capabilities so until I really sit down and look at all three of them I won’t know, but I’ll be starting with one on the left and my right ear is stable right now, but I’m anticipating when I wean off the meds that the right ear will start to fail as well so I am trying to get the left CI functioning and getting up to speed on my hearing capabilities preparing for that second one.

Since I now know you have a CI how do you feel about it call I need to take you to get used to it. Do you enjoy life can you listen to music can you hear conversations, have you learned how to decipher sounds now I’m told that’s the most difficult part.

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No problem. I am officially 'Julia', but was always called Julie. I'll take either one!

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@gencha

I am on my third set of hearing aids and have adjusted to them. I was wondering whether anyone has seen the tv commercial showing a mother and her adult daughter talking, where the daughter is describing how her mother often did not hear people talking to her and of course didn't respond They both laughed and thought it was quite humorous that the mother couldn't hear. I am wondering if anyone has seen that commercial and if you did, what are your thoughts about it. My thought, and maybe I am too sensitive at my major hearing loss, but that commercial is not funny and honestly, offensive. I have thought about writing to the company or even the ADA because I find it insensitive. I am not mentioning the name of the manufacturer for obvious reasons. Admin, you can delete this if you find it unsuitable for our group. Thank you.

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@gencha I encourage you to write to the company. It's time for us to 'make hearing loss visible'. Also to erase the ridiculous old stigmas attached to it. While HL has always been more common in older people, it is not rare in younger people. I am familiar with that commercial and my blood boils every time I see it.

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@gencha

Hi Mary, thank you for your response. The commercial is for Miracle Ear. It is a tv spot featuring 75 years Melissa and Deborah and it looks like it came out in June. You can search for it online. I think it shows on the iSpot.tv but you can search on YouTube and it should bring it up. I checked with our Moderator before posting the additional information to stay within guidelines.

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Thanks from me too @imallears

You and I have been involved in HLAA for many years and are well aware of all the crazies that have come along with the development of hearing aids. I actually have a collection of old advertisements for hearing aids that go back to the 1930s. They all make false claims that are intended to sell a product. Not sure where that collection is, but if I ever find it I'll share a few of them.

HLAA has educated millions of people over its existence. I hope HLAA will educate millions more. The problem now is getting those who need the information HLAA shares to be aware of the organization. From its early days, this organization has helped people understand what hearing loss does to a person, along with advocating for better products, truthful advertising, and much more.

Yes, it's right to be offended by these off the wall advertisements that add stigma to an invisible disability that over 48 million Americans live with.

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I have a new post up about my hearing loss and purchase of hearing aides. I posted new discussion this morning, I believe on this site....and I'm not seeing it...?? Can you help find it, re-post?? I've checked everywhere, can't see it posted. Thank you!

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@dazlin

I have a new post up about my hearing loss and purchase of hearing aides. I posted new discussion this morning, I believe on this site....and I'm not seeing it...?? Can you help find it, re-post?? I've checked everywhere, can't see it posted. Thank you!

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@dazlin, to see all your posts and comments, go to your profile. You will see a history of your activity. Here is the new discussion you just started:
- I got Phonak Hearing aides... https://connect.mayoclinic.org/discussion/i-got-phonak-hearing-aides/

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Sometimes conductive hearing loss can be corrected with surgery called a stapedectomy. I was told by two ENT doctors that I needed that procedure to restore my hearing. I put it off b/c one in one hundred surgeries result in total deafness in that ear b/c of unusual location of a nerve that can be inadvertently cut through. Finally, I decided to get it done. I went to a surgeon that was featured in “D” Magazine as the best in Dallas according to some survey or other. He recommended another surgery called a Bilateral Chain Reconstruction. He said that the beauty of this surgery was that there was no chance of inadvertent deafness as could happen with a stapedectomy and that he could go back and correct any hearing loss that might remain post surgery. After surgery on both ears, I had no improvement but my hearing tests showed slight differences in results so I opted to have him try again in each ear. Same results only now I had “crickets” in both ears plus, oddly, and perhaps not related, I had taste bud problems. He sold me 5K hearing aids and sent me to a dentist/doctor who supposedly worked with tongue anomalies. No help resulted. I have been to two ENT doctors since who tell me this is a “bizarre” story and should never have been done. Luckily I have the operative notes to prove the doctor did this bizarre surgery. One doctor said I should have had the stapedectomy, the other says I just need another 5K hearing aide. I just don’t trust any of them. I did buy a Boze OTC hearing aide which is no better, no worse than the 5K hearing aids. Maybe they would work for nerve deafness but not conductive loss.

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@bunnybear

Sometimes conductive hearing loss can be corrected with surgery called a stapedectomy. I was told by two ENT doctors that I needed that procedure to restore my hearing. I put it off b/c one in one hundred surgeries result in total deafness in that ear b/c of unusual location of a nerve that can be inadvertently cut through. Finally, I decided to get it done. I went to a surgeon that was featured in “D” Magazine as the best in Dallas according to some survey or other. He recommended another surgery called a Bilateral Chain Reconstruction. He said that the beauty of this surgery was that there was no chance of inadvertent deafness as could happen with a stapedectomy and that he could go back and correct any hearing loss that might remain post surgery. After surgery on both ears, I had no improvement but my hearing tests showed slight differences in results so I opted to have him try again in each ear. Same results only now I had “crickets” in both ears plus, oddly, and perhaps not related, I had taste bud problems. He sold me 5K hearing aids and sent me to a dentist/doctor who supposedly worked with tongue anomalies. No help resulted. I have been to two ENT doctors since who tell me this is a “bizarre” story and should never have been done. Luckily I have the operative notes to prove the doctor did this bizarre surgery. One doctor said I should have had the stapedectomy, the other says I just need another 5K hearing aide. I just don’t trust any of them. I did buy a Boze OTC hearing aide which is no better, no worse than the 5K hearing aids. Maybe they would work for nerve deafness but not conductive loss.

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Thank you for sharing your experience. Conductive hearing loss is caused by problems with the bones in the middle ear. It can be helped with a stapedectomy in most instances. However, like any other corrective surgery it may not be successful 100% of the time.

Sensorineural hearing loss (SNHL) involves the inner ear and is usually a permanent condition because the hair cells in the cochlear do not regenerate once they are damaged. However, the development of cochlear implants that bypass the inner ear and connect directly with the auditory nerve can bring back a good deal of hearing for many people.

Some people are diagnosed with a combination of both sensorineural and conductive hearing loss. It's fair to say that every hearing loss is unique. It's also fair to say that hearing loss has been a medical mystery forever. Thankfully, there are procedures that can be done today to help us hear better, but they don't necessarily 'correct' or 'cure' it. They can and do make it less troublesome.

Well fit, high quality hearing aids can help most people. They don't cure the hearing loss, but they help. When connected to other hearing assistive technology they can make a positive difference.

Here's a link to some interesting information about the bilateral chain reconstruction you had. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3889351/

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I just wish I never had those 4 surgeries b/c I am left with loud tinnitus I didn’t have pre- surgery. I guess I am lucky my post-op hearing tests didn’t show my hearing was much worse, only different. I continue to have a need to improve my hearing when I “pop” my ears by valsalva, which I resist now b/c was told I ruined the outer ring of my eardrum(as I understand it) by doing this. Honestly though, I am super glad my hearing didn’t get a lot worse.

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Anyone that wears hearing go to a drive through, like McDonald's? I went last week, for my grandson. Figured this would be a good test. Apparently, I didn't very good. I really couldn't understand the clerks questions. They go numbers on the menu, then ask which drink, what size, etc. Now that I know the order of procedure, I might do better. I never eat McDonald's, but my 4 yr old likes his happy meal, so I wanted to test myself. Overall, I'm very disappointed 😞. Am I expecting too much??
I was told, I'd always need face to face ...but thought maybe I could do this. I'm bummed.

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