How does hearing loss change you?

Good to know!

My hearing loss started a number of years ago. I have been wearing hearing aids for about five years. At first, the loss was minimal, then moderate, but it is progressing quickly, and now the last ENT I saw a couple of months ago described it as “significant,” implying I must simply accept for what it is and stop trying to change it. Its effects on my life are profound. Music has always been a major part of my life. I played piano and a couple of other instruments briefly as an adolescent, loved to dance, go to concerts, and simply listen to many kinds of music - classical, jazz, rock, folk, etc. I sang in a number of choirs over the years.

Now most music is simply lost to me. Familiar music sounds nothing like it did even five years ago. The distortions in the harmonies make it impossible to enjoy. And so I have stopped going where music is played. Restaurant background music is irritating, particularly the endlessly repetitive electronic “beats” that seem to underlie most of it currently.

I also cannot attend live theater and presentations, as sound systems seem to garble language or somehow render it indecipherable. Unmagnified speech is better, as long as I can read lips and my hearing aids can pick it up over the distance from the speakers.

I have to avoid large groups of people and choose restaurants and dining times with care, because hearing in a crowded, noisy space is not in the cards anymore.

My ideal setting is a quiet space with a very small group of people who understand my hearing loss and are used to be being asked to repeat what they have just said.

I also suffer from tinnitus and musical ear, which are sometimes very disturbing, but I am mostly learning to tune them out.

I will be returning to my audiologist in a couple of weeks to try and find new hearing aids and perhaps other equipment that I hope will give me more function,, but I am unconvinced that her advice is not colored by her own associations with certain hearing aid manufacturers. It’s unclear to me how you find an audiologist you know is open to providing the patient the very best technology, without considering their own bottom line, or who is willing to work with the patient carefully enough to find the best solutions.

Oh my goodness. It's sad and frustrating to know that so many people are not getting the information they deserve to have. TRUST is such an important value. If you don't trust your 'audiologist' I encourage you to find one you trust. Ask other people who use hearing aids about their experiences.

The hearing aid industry is a bit difficult to understand. The qualifications of and licensing criteria for selling hearing instruments is difficult to understand. People who are bone fide audiologists should have doctorate degrees (AuD), but many who have basic education as in high school diplomas, also can be licensed to sell hearing aids as hearing instrument specialists (HIS) in most states.

And yes, regardless of degree, most from both levels consider their practice a 'business' that is selling a consumer product. As a 'consumer' of those products you have the responsibility to learn as much as you can about what to buy. Yet, most who buy hearing aids think of themselves as 'patients' rather than consumers. When you buy any other consumer products, such as a new stove, computer, television, do you not do research on what product best fits your needs?

This is changing a little due to the recent laws that started to allow hearing aids to be sold 'over the counter'. OTC hearing aids are available at pharmacies, technology stores, etc. The odds of employees in those locations who know much about hearing loss are slim. They are selling products to consumers. Those products are designed only for people with very mild to moderate hearing loss.

Another unfortunate reality is that those who sell hearing aids, regardless of which 'level' they are at, rarely take the time needed to counsel the people with hearing loss who need hearing help. Hearing loss affects our mental health. Yep, time is $...but effective counseling also requires skill. Some are good at it, but many are not.

Your story tells me that you need more information, unbiased information. You need to know more about technologies that go beyond hearing aids that can help you in noisy social settings. You need to meet other hard of hearing people who, like you, have had to face the realities of adult onset hearing loss that changes your life. There are millions of us out there. Most are more concerned about hiding their hearing loss rather than talking about it. It helps to have open discussion on any issue that changes your life. It's good that you have come to the support group at Mayo Clinic Connect.

I've received more support and information from other people with hearing loss than from any of the professionals I've gotten services from over the last 40 years! I cannot give enough credit to the organization "The Hearing Loss Assn. of America, Inc." (HLAA) for giving me the opportunity to learn. HLAA gave me my life back years ago and encouraged me to reach out to share information with others. Attending national HLAA conventions, state and local chapter events etc. is very helpful. If there is an HLAA chapter anywhere near you, consider participating. Consider attending their national convention this coming summer if you can. If you live in a state that has an HLAA association attend their events. Wisconsin HLAA is holding an educational conference this coming April. It is an open conference. If this is of interest to you or anyone else, feel free to PM me for further information. Registration for this event is open right now.

HLAA folks are not culturally deaf. They are hard of hearing people who embrace the use of technology to remain in the hearing mainstream. That technology should be one of the first things a hearing aid provider explains to you.

Sorry for my rant here, but this void comes up way too often. Do you use assistive technology that goes beyond your hearing aids? Has your audiologist mentioned cochlear implants? Do you have telecoils in your hearing aids that can connect you to audio devices and public address systems in various places? Did your audiologist tell you about telecoils? Bluetooth is also a very helpful technology but it cannot do what telecoils do. Both technologies can make a remarkable difference when used appropriately. (BT adds considerable cost to hearing aids and is becoming standard.) Telecoils add about $10 to a hearing aid and is rarely explained. Don't you wonder why?

HLAA's website is http://www.hearingloss.org It's well worth exploring.

I completely understand your hearing issues. I’m seeing an otolaryngologist at UTSW, a huge hospital in Dallas Tx. You are right about going to places that sell hearing aids. UTSW suggested a place that sells the hearing aids he thought would work the best. I ended up with Phonak crossover until i lost both them during Covid when I removed my mask. My right side hearing is gone and I bought cheap aids on the internet until i felt comfortable and had the money to buy again.
It sounds like your sids need to be adjusted for the levels of sound you have lost.
I ended up at Costco after much research. They will adjust your aids free whenever your hearing changes and you can go to any Costco for service. They have a large range of aids and they suggest but do not press you to buy. I choose a molded in the ear and I’m much happier. I have auto immune Ear Disorder.
Google and research large teaching hospitals with Otolaryngologist. If you don't like the Doctor find someone else. Has the ent tried a medrol dose pack? Steroids?
Good luck on your journey.

I have heard far more positive stories about Costco hearing aids than I had ever expected to. They do sell brand name products. They allow a generous trial period. They have trained personnel selling their hearing instruments; mostly hearing instrument specialists (HIS). A key factor at Costco is that the hearing aid fitters/ providers are not working on commission. Do you think that might make a difference?

Which brands of hearing aids are used in the Mayo Clinic? I can’t find a list anywhere. I have moderate hearing loss due to my age according to Mayo audiology report. Am I a candidate for Costco or should I stick with Mayo in Jacksonville?

It is not the brands of hearing aids available but the competent audiologists who fit you according to your hearing loss. Join the Hearing Loss Association of America. You will find chapters all over the U.S.A. I used to think I was the only person who could not hear well. I would stay with Mayo's audiologist.
Hermine Willey
Columbus,Ohio

Thank you so much for your response. It was actually the audiology dept at Mayo recommended Costco because they had such good pricing. 😁

Has anyone out there but me tried TruHearing? They are a great resource but finding a great audiologist who is part of their network of providers is equally important.
I drove an hour to my old neighborhood because after my move I have not found anyone to replace her.
A hearing aid is only as good as the audiologist fitting you and setting up programs for different situations. Noisy environment is my favorite for crowded restaurants.

My advice to anyone who is a candidate for hearing instruments is to have your hearing tested by a professional audiologist. Doctors of Audiology have AuD behind their names. Talk to other people you know who use hearing instruments and find out their stories. Where do they go? Whom do they see? Pleased or not pleased, etc.

After receiving a full hearing test, ask the audiologist for a copy of your audiogram. You have a right to that information. It gives you the opportunity to shop for hearing instruments without having to be tested again.

If you feel what the testing audiologist offers you is too costly, (Hearing instruments can range from $2000 - $5000 apiece in some cases), take time to shop around. Go to Costco if you want to. Their products are less expensive. They offer longer trial periods. Try them. See if they help you. Take time to try them in every possible place where you want to hear better. If they don't help enough, return them and start over.

Know that once a trial period is over, it's unlikely you can get any money refunded...so read the fine print. Many audiologists only allow 30 - 45 days for trial. This is their business model. It is up to YOU to know what's helping. Also it's up to you to go back for adjustments if it is not working. Once you are fitted with a hearing instrument you have a job to do to help yourself.

It's not an easy job...but it's well worth doing. Good Luck!