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.

@nurseheadakes After having hearing tests in a few different states and situations over a couple decades, the tests I had concerning hearing and balance at Mayo MN a few years ago is a "gold standard." The Hearing aid folks were separated and really just for information...in my case..I ultimately received my hearing aids from the VA near my home..

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@julieo4

@earscan Some of the information you've posted is incorrect. Officially, OTC hearing aids are not yet on the market. The FDA has not written and published the regulations for them. At this point, while some of the devices being advertised as hearing aids, they are not so under regulations. Until the FDA regulations are published and posted there are no legitimate OTC hearing aids. Hopefully that will happen soon.

Those who are audiologists (AuD) have more than a master's degree in audiological studies. They have a doctorate degree. Hearing instrument specialsts (HIS) do not have that kind of education and many don't have any college level training. Yes, some do as this is a lucrative profession. In my state, both AuD and HIS take the same state exam to be licensed to sell hearing aids. Most HIS do internships before taking the exam. I believe that is typical of most other states. Personally, I believe in education and would be inclined to put my trust and health in the hands of someone who is educated in the field I have issues in.

There is way to much misinformation in the hearing healthcare field. Distorted information as well. Most advertisements for hearing aids market denial by suggesting that people should hide their hearing loss with 'invisible' products. It's a shame that hearing instruments cost so much. That would change if the people who could benefit from them would get them, or if insurance coverage for them would be standard. Many cannot afford to buy them, and denial fuels that fire.

I would also point out that while the big box stores do sell quality hearing instruments, some of those stores are able to 'lock' the hearing aids they sell. This simply means that they cannot be adjusted or repaired by another entity. Not a good deal if you need support and are not in a place where that particular franchise is available to you.

Hearing aids have been part of my life for over 40 years. I am thankful for the information I have accumulated.

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First of all, check out High Health Innovations, OtC from United Health Care, and Eargo Hearing Aids which are now traded on the NY stock Exchange. These are OTC hearing aids and can be ordered on line as many other hearing aids can also be ordered on line. There are many OTC hearing devices available on line. I worked for United Healthcare in the education department on all the states regulations and many states exempt audiologists from taking that same exam that hearing aid healthcare professionals take. Their exam, and I helped write the training courses, are more about what the hearing aids can do, about receivers and mics and the IC chips, about acoustics and ethics. Many hearing instrument specialists are also audiologists and are working in "big box" places. Some are actually ENTs.

The cost factor is a misnomer and relies on the overhead of the provider. A Siemens hearing system can sell for $7,000 at Miracle Ear or at an Audiologist/ENT office and the same system can sell for $2,000 at Costco. More education in this environment does not mean one knows how to program correctly. When Eargo turned their internet sales over to sales by customer service, who memorized fixes to problems, the return rate was much higher than if the aids were programmed by hearing aid professionals, and a little higher than if they had been programmed by audiologists. Look at the return rate of different groups and those with the most experiences have less returns than those right out of college. The hearing aids, wholesale, only differ in price by the quantity the client buys; but the retail price is often determined, not by expertise, but by degrees after one's names. I have been in this field for 40 years and have seen it all. It benefits the consumer/patient to shop around. Insurance currently covers a lot of hearing aids, but the amount the insurance provides often does not constitute the price of a quality hearing aid. The difference? It is how the hearing aid is manufactured, ie. the parts are typically $300, and the whole sale price for a quality hearing aid is around $1,200 so the rest is what the professional charges. I dealt with all major manufacturers. This gives you an idea of how to approach buying instruments and, again, the key is in the programming so look for the most experienced person.

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@barbb

@earscan Hi Gina, are you as knowledgeable about C.I.s as you are about hearing aids? 🙂

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sorry, I only know when to refer patients out for an CI. This is the time to find an experienced professional. Thanks, Gina

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@earscan

There is a misnomer out there that an audiologist, preferably an AUD, is the best for hearing aids. Training the audiologists and hearing instrument specialists in a major manufacturing facility taught me the secret is more in the programming, not the education. Most AUDs are exempt from taking state licensing tests and so have very few real life experiences in learning OJT for an extensive training program. A good example is a patient comes in with squealing in his/her aids. An AUD, newly out of school , will take the highs down. An experienced professional would know to leave the highs that the patient needs in there, and compensate by increasing some lows. I have worked in ENT clinics, for ENT physicians, set up protocols for large chains which often employee audiologists, usually for insurance purposes. The same aids you might get in a physician's office could be purchased at Costco under a private label and be $4000 less expensive. Not only that, but take the aids back in 2 years and Costco would refund your money. They don't "sell last year's models" as I set up many of the protocols for Costco. They sell top quality and have a return policy of 90 days. The audiologists are great for complicated fittings like bi-cross or cross or anyone under 18 yrs of age. And outside of the VA, Costco does more hearing aids than any one else in the US and have strict education guidelines. I have also worked for OTC hearing aid companies including United Health Care, and for a routine high frequency loss, OTC can be quite effective if you have multiple programs. Often these OTC hearing aids also employee some audiologists, some hearing aid dispensers and then there's also customer service reps, which don't know that much. I would suggest getting a copy of Consumer Reports, research want you want, and then shop around. Check the feedback. And you will save quite a bit of money and be happy in the end. Gina

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Reply to earscan (Gina): I recommend Costco; that's where I bought an aid for my "sorta" hearing ear (other one is toast). The fitter (or whatever I should call Ms. Wonder Woman) is great: she has studied a great deal and knows more than either of the audiologists (or the doc) at the big CI clinic two hours away. Believe it or not, she actually knows what Meniere's Disease is and how to fit an aid that will work for someone with it. My single aid cost $1,500 instead of over $3,000; it's a Bernefon (Oticon). Costco has a very liberal return policy. Also, there's zero charge for additional hearing tests, adjustments, etc. For the $1,500 I spent, I've seen this woman several times, as I went bilateral a year after buying the aid for my "good" ear. She was able to reset the aid so that I could tolerate the recruitment that comes with Meniere's now that both ears are affected. The one thing I'd say is that not all Costcos are equal, so, if the one nearest you doesn't have a great person to fit your aid, try another Costco.

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Actually the FDA is not the determining factor since hearing aid manufacturers only submit a few samples of hearing instruments. A lot depends on the Board of Professional Regulation and what each state requires to achieve licensing, be it AUD or HAD. Most professionals cannot read the manufacturers' spec sheet sent with hearing aids and again, they are massed produced by the manufacturer. Hence, having a test box to read your own specs out is essential so that the distortion rate on the instruments can actually be seen. Often test booths are used to find medical problems not associated with hearing aids. The best test is the QSIN Test, or speech in noise, to see how well a patient performs during a noisy background because that is where the patient typically wears his/her hearing aids. The bells and whistles often done during testing are often used to increase the value of the hearing instruments but in the long run, does not increase the understanding of speech while using the hearing aids. Sorry to go on so much! It was my passion for many years and while the average return rate for hearing instruments is 25-30%, I typically might have had one per year, but I worked very hard for my patients and often thought outside the box to make them happy. The better educated the consumer is, the better choices he/she will make because they do help tremendously! Thank you for your patience! Gina

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@amberwaves

Hi I am so happy I found this site. I am 80 years young and after I had an extremely bad cold with cough that sent me to an after hours med clinic I found that I couldn't hear well in my left ear. Went to an ENT specialist who took a hearing test and immediately told me I needed a hearing aid. I have lived with my bum ear for a couple of years and no find my hearing is getting worse. I know that if I go to an audiologist they will immediately show me a $5000 hearing aid. I saw some on line that were cheaper. Can you tell me where do I start in finding help. Is it possible to get a hearing aid for only one ear or do you need two? Any help you may give a newbie will be appreciated. AmberWaves

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@amberwaves. You've come to the right place to get some good advice about purchasing a hearing aid and learning all about the things available to help us hear more easily. I was in the same place you are several months ago, i.e. I knew nothing about how to go about buying a hearing aid. You are a step ahead of me, actually, since you've been tested by an ENT. With the help of people on this site, I learned there are hearing aids and devices that will help me hear better, located an audiologist to visit, identified the kind of hearing aid I need, and put together a plan to try them out this summer.

In addition to this wonderful site, where kind smart people share their wisdom and knowledge, I'd like to recommend three sources of information that really helped me: (1) HLAA, (2) Consumer Reports, and (3) DrCliff AUd videos on You Tube. Other people recommended the first two.

1. HLAA - Hearing Loss Association of America,
https://www.hearingloss.org/ Years ago Julie, who responded to your post right away, helped establish the national organization Hearing Loss Association of America (HLAA). They have state and local chapters around the country and a great website. It is a wonderful source of information and has become one of my go-to places to get good information about a whole host of issues related to hearing. I'm hopeless when it comes to understanding new technologies and am learning a lot about technologies from their website I didn't know existed to help people hear better, not just hearing aids. She and Toni in Michigan, who post here, are leaders in their state and local HLAA branches and have volunteered thousands of hours over decades to helping people hear better through HLAA, MayoConnect, etc. I'm looking forward to getting involved with that organization when it's safe to attend their meetings.

2. I love Consumer Reports and printed out their articles on hearing aids. I'm not sure how often they test hearing aids and print their reports, but I trust their evaluations. They have a great website too.

3. DrCliff AUD on You Tube. Toni in Michigan recommended some wonderful informative YouTube videos by DrCliff AUD on everything I ever wanted/needed to know about hearing aids. People learn in different ways; and it is so easy for me to learn new things from his short fun videos He even reviewed Consumer Reports articles on hearing aids and Costco's hearing aids in two separate videos. His pet peeve is audiologists who don't practice best practices and really shortchange their patients. He set up a network of audiologists around the country who vow to practice best practices. The audiologists pay him to be in his network, and he uses the money to produce videos. I recently moved and had no clue how to find a competent audiologist. I found one near me in his network that I'll be visiting this summer. She seems to have sterling credentials, including working for 4 years in the department of one of the nearby major medical centers testing people and fitting hearing aids. I usually am wary of these cozy relationships, but I think he is genuine in wanting to connect patients with good audiologists. Audiologists pay for advertising in fancy magazines and might as well give their money to him to be used for a good cause. I'll also be going to Costco, since Consumer Reports and DrCliff AUD, recommend their hearing aids.

I don't know anything about OTC things you can get over the internet. Anyway, I hope these suggestions help you. Good luck! Nancy

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@sophie32

When I take a hearing test in order to get new hearing aids, I find a few frequencies cause intense pain, especially in my left ear. The audiologist tells me the frequencies are related to speech, and if they are toned down in my hearing aid, I will have problems hearing speech clearly. Is this a common problem? My hearing aids hurt my ears after a few hours.

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I think I may have discovered the reason for my ear pain when taking hearing tests.. A month ago I was diagnosed by biopsy with Giant Cell Arteritis, a rare but curable disease, which may cause ear pain as well as jaw pain and other problems. My audiologist has lowered the volume in my aids, which helps considerably, and I can adjust them higher for short periods. At this point I need to focus on recovering from GCA, and am glad to have the help of a audiologist with realistic expectations. This forum has been very helpful.

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@sophie32

I think I may have discovered the reason for my ear pain when taking hearing tests.. A month ago I was diagnosed by biopsy with Giant Cell Arteritis, a rare but curable disease, which may cause ear pain as well as jaw pain and other problems. My audiologist has lowered the volume in my aids, which helps considerably, and I can adjust them higher for short periods. At this point I need to focus on recovering from GCA, and am glad to have the help of a audiologist with realistic expectations. This forum has been very helpful.

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@sophie32 Thank you for sharing this information with us. It helps so much to have 'answers' and reasons. Knowing it is curable has to be very comforting.

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Also, the vagus nerve runs along the floor of the auditory canal and pressure on it will also cause pain. Gina

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@earscan

Also, the vagus nerve runs along the floor of the auditory canal and pressure on it will also cause pain. Gina

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I appreciate the information, Earscan. Giant Cell Arteritis at this point is only a possible cause of my ear pain, so I may have to look further. Thanks.

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