Hello! Hoping to Share UPDATES in data on Hearing Loss

Yours is an interesting post. You have done some research. You are experiencing hearing loss and sound frustrated. Hearing loss is frustrating. I have it and completely agree. I was diagnosed when I was a college student in the 60s...way back when. My first hearing aids were merely amplifiers. They did help, but only in quiet environments. I hesitated to get them because I had been told by medical doctors (ENTs) that they wouldn't help my sensorineural hearing loss. So I put it off for over a decade as my hearing deteriorated and I became desperate. In the early 80s I learned about an organization called 'Self Help for Hard of Hearing People', which is now called The Hearing Loss Association of America. (HLAA). Through active involvement in this consumer based support organization I learned a lot. I also am a benefactor of the advancements in hearing aid technology and cochlear implant technology. I feel very blessed to have been actively involved in the learning curve over many years. Hearing aids have improved greatly since the 70s.

Cochlear implants were experimental back then. The improvement in this technology is remarkable. I am blessed to be able to combine the two technologies and am a binaural user of both. They work together. Without technology I would likely be a recluse Instead, I'm able to enjoy life. But, I had to learn what was available. How it might help, and then choose to get help.

I fully agree the audiological field is confusing. Who is licensed to sell hearing aids in your state? In my state, audiologists with Doctorate level degrees like a PhD, not an MD, are competing in hearing aid sales with others who test for the same license with high school diploma and an internship. How can they possibly have the same knowledge. And yet, these devices today are more like computers than anything else. Are they medical devices? I believe so, but hearing aids are sold like consumer products. And, for the most part insurance does not cover them. Cochlear implants are another story as they are medical devices.

Yes, the industry is confusing. Hearing loss is frustrating. Untreated hearing loss leaves a person in isolation. Isolation is known to cause depression and possibly cognitive decline. So getting treated does matter.

I value the information I have received from other people who have traveled this road. Involvement in HLAA has given me more than I ever got from the 'pros', because I learned how to ask questions, and get answers. I strongly recommend membership in HLAA. Check it out: http://www.hearingloss.org There is a ton of valuable information there, along with recordings of podcasts on a variety of topics.

HLAA doesn't endorse providers or products, but it provides a forum for discussion about experiences others have had with them. Many chapters meet on Zoom now due to COVID. Meetings are captioned.

What state do you live in? Regulations vary.

I would add 1 comment. in addition to hearing devices, the hearing aid mold may have significant influence on receptivity. I notice that I often hear better with headphones. and a few wired inserts into the ear channel sound better than my hearing aids. I read on web that the design of the mold makes a difference. the degree of insertion into the canal might be a factor? my audi does not seem to have any concerns.i wonder if this area need more focus?

@ellefaganusa11 I was on the periphery of the hearing loss world and knew a lot academically but not from my own experience. Then I noticed my own hearing loss almost 20 years ago when I "failed" a hearing screening. My hearing got worse over the years and I now have digital hearing aids that work really well for me. @julieo4 is the expert on this subject and what she wrote is a great history of what's been available (and not been available) to people with a hearing loss.

I met a man in his 80's the other night who has cochlear implants for both ears. He got his first implant when he was about 60 years old and the other implant about 10 years ago. He told me that he had measles when he was very young (around 3 years old) and in those days no one knew he lost so much of his hearing from the measles. It wasn't until a nurse tested him when he was around 10 years old that anyone knew. And in those days (the 1940's) he seemed to get along OK so just kept going to school and nothing changed. No special teachers were around then for him. He graduated from high school, went to university and then law school and became a successful lawyer. I think he must have had normal speech and language development up until age 3 and that helped him a lot. But I couldn't help but think of the sounds he missed for almost 60 years! He said that with that first cochlear implant he heard birds for the first time.

Where do you live? Different countries have different regulations. Also, it's different in all states in the U.S. You have been very persistent and advocating for yourself. That's the best way to get what you need for yourself.

How can I or others on Mayo Clinic Connect help you?

So many hearing aids now are fit with domes rather than ear molds. I have regular cast earmolds. I tried domes last time around and learned quickly that they were not for me. Creating ear molds is an exact science of sorts. It is very similar to casting a dental inlay. It must fit exactly or it will not work well. When poorly cast, it might hurt. Or it might cause feedback and a whistling noise. It takes skill and training to cast a proper ear mold. I suspect that in the current world, those domes are often used when ear molds would be better. Domes come in a variety of sizes but are not cast. Sometimes we simplify and degrade. To clarify, the domes work well for some people, but if one's hearing loss is severe to profound, the cast mold will likely be the better choice.

@awilst
What Julie says is spot on about molds and domes. Domes are easier for the Audiologist time wise. However, even before my hearing loss progressed to profound I insisted on custom molds with no vents. I am lucky to have an Audi now who knows how crucial a mold can be in better hearing. She has mine made so that there is no leakage of sound and the part that goes directly into the canal is longer than usual. She gave instructions last time to also have the mold extend up the concha a bit so it doesn’t move around. If she or I don’t like it…back it goes.
No Audi should shrug off the need for a proper fitting mold. If they do then they need an education.
I usually trial my molds for 60 days and then I pay for them, Now…that’s the way it’s done!

FL Mary

It takes skill to properly fit a hearing aid. There are a variety of settings and programs. The fitter has to figure out what works best for you. And, you have to be able to tell them what is working and what isn't. Most likely you have trouble understanding speech when there is background noise in the environment. While it's impossible to block all that noise out, settings can make a very positive difference.

The piece that fits in the ear is either a mold or a dome. As mentioned before, the mold is more difficult to fit, but is usually a better option for someone with severe hearing loss. Ear canals are all different, so a custom fit mold requires casting and then it often needs some adjustments after it has been cast and fit to the hearing aid. They can be filed down a bit if they are too tight. Again, that takes skill by the person who does that. Not all providers are alike. It's important to have confidence in your provider.

If you have the opportunity to talk to other people in your community who use hearing aids, do so. They will tell you about their experiences with providers and products.

They have always given my husband domes (plus he has bought a lot of useless online 'aids'. He has a memory problem so this could add to the problem that he is always losing a dome in his ear canal. Then won't sit still when I go looking for it. Costco Audie ignored me when I tried to tell him the problem Bill has in using them. At least the Costco set were better than others he has tried.

I can relate to the effectiveness of cast mold ear pieces. I have worn ear molds for over 60 years. I recently wanted to try a hearing assisted (analog low cost) aid as an emergency device when my digital aids needed repair. I found one that had sufficent power for my severe hearing loss. The dones supplied did not provide full sound intensity and had lots of feedback. When I replaced the dome with one of my spare ear molds, the replacement aids worked very well albeit less than my digital aids. Thus they provided an adequate backup for my regular, much more expensive aids.

@miker8888 Those of us who have been using hearing aids for decades have a pretty good perspective of how technology works and changes. Your experience with domes mirrors mine. I knew quickly they weren't going to replace the custom ear molds for me.

Having an emergency back up for the HAs you usually use is a good idea. What device did you use to create that back up? Were you able to simply replace the dome with an earmold?

Music tends to sound much better if ear mold vent holes are blocked. Ear molds have vent holes in different diameters and some are un-vented all depending on the patient needs. Blocking the vent holes contains the low frequency sounds from escaping. So the music will sound "tinny" with the lack of the low frequency bass notes.