Hearing Loss: Come introduce yourself and connect with others

Hello Friends,
I have been dealing with hearing loss my entire life. I have had around 20 tubes put in my right ear and a few in my left ear.
Last May, Doctors here at Mayo used a new technique that attempted to stretch my eustatian tube. They were not able to go in as far as hoped for but the improvement in my right ear hearing was significant.
They then put in a tube under general anesthesia that they hoped would stay in for 5 years.
For 5 months my hearing was very good. But the tube feel out after only 5 months and my hearing is affected again.
I have 5 grandkids and want to be able to hear them!
I hope my appointment tomorrow will find solutions!

Thank you for responding, I appreciate it.

Well, finding a hearing clinic that employs good practices, as urged by Dr. Cliff is difficult.
I looked on his HearingUp map, and there was one in my city, but it does not honor my insurance. He stresses that REM measurements must be done, or all is in vain.

So, I have a couple or three months to keep looking. I plan to call the insurance and see if they will send a list of a few clinics within say, 25 miles that do honor it. I'm not a cheapskate, but the $1200 is not something to sneeze at for me.

@comeagain and others...
It is important to understand that hearing loss varies greatly among individuals. There is no one 'best' brand for everyone. It's important to understand that providers vary. Some have served apprenticeships and may or may not have college degrees. Some have master's degrees and some have gone further at the university level to achieve an AuD degree, which is akin to a doctorate level degree in other fields. Those people have AuD behind their name. Others may have MS CCCA. (certified clinical consultant/audiology) If they have HIS there, they are considered 'hearing instrument specialists'. The HIS may or may not have college education. All of them are 'licensed' based on the state where they practice.

So how confusing is that? Some providers/fitters at each level concentrate on selling one specific brand of hearing instrument. Others may sell a variety of brands.

It is important for adults who need hearing help to understand that in most instances, it is their responsibility to ask questions and learn all they can before they buy a product. Sadly, that's not the common procedure.

I encourage people who have decided to get hearing help to talk to other people who use hearing aids. FInd out whom they trust as providers. It's preferable to go to a doctorate level audiologist to be tested if there is one in your area. AuDs have the education needed to diagnose potential issues that may require medical intervention. That's rare, but it always a possibility, especially with sudden onset hearing loss.

Once you learn why you have hearing loss and are tested by a professional, ask for a copy of your test results. If they want to fit you with hearing aids, that is up to you to decide. Be sure you understand their return policy timeline. Try those HAs in every possible situation where you want to hear better. If you find the HAs are not helping, return them. That provider may offer to fit you with something different and allow you an extended trial period. Policies vary. If you're not getting help from the provider or the product return them and take the copy of your testing (audiogram) and shop elsewhere.

A reality about hearing instruments is that most quality brands are similar. The skill and patience of the person fitting them is huge. It doesn't matter how much education a provider has if they won't take the time needed to fit the aids properly AND instruct the buyer on how to use them. That includes understanding options that some HAs have that others don't.

Those options can make a big difference in how well you are able to hear in places like worship centers, performing arts centers, meeting rooms, and in social settings. That generally means your hearing aids should have options that connect with installed hearing assistive technology such as hearing loops, FM systems, and infrared systems. Those systems require telecoils and Auracast (a new technology that is coming but not available yet. ASK YOUR PROVIDER TO INCLUDE BOTH OF THESE OPTIONS IN ANY HEARING AIDS YOU PURCHASE NOW> The goal with these options is to filter out background noise and allow the desired sound to come directly to your personal HAs. Auracast will likely be here during the life span of hearing aids you buy today. (Disclosure: My personal hearing technology has both options installed. No locations in my area have Auracast yet. Many have hearing loops that work with telecoils. It makes a positive difference!

In many instances, the broadcasting technology needed to use these assistive technologies may not be installed. WHY? Because it takes advocacy and education to let those places know you want to hear and have a right to hear. Why don't people do that advocacy? Because hearing loss is 'invisible' and the general attitude about it is to hide it and not be open about it. To advocate successfully you have to be open about what you need.

We who have hearing loss have created many stigmatic problems ourselves. We are not all OLD and over the hill. We are not stupid or absent minded. We should not be ashamed to have hearing loss. It's good to have a forum like MCC to blast those stigmas and move forward.

I highly recommend connecting with The Hearing Loss Association of America via their website, and chapters that are in various locations in the USA. Start a chapter if there isn't one near you. Coming together with other people who have hearing loss validates feelings, fears and frustrations. It helps erase the stigmas. It educates. That education leads to the advocacy needed to live WELL with hearing loss.

Yes, like all other non profit organizations HLAA Is going to suggest a donation. It's a good organization to support, but you do not have to do that to get the information they share. http://www.hearingloss.org

@comeagain REM is the gold standard of fitting hearing aids along with custom moulds. $1,200 is nothing to sneeze at but you can’t put a price on hearing better.
Good luck in finding someone in your area.

@julieo4 I thought the same thing about hearing aids but after doing extensive research Phonak I90 Sphere Ultra hearing aids are the best on the market. Oticon are second best but without the extra AI chip the other brands can’t compete in noisy environments.
People are so obsessed with having the smallest least conspicuous hearing aids but with severe to profound hearing loss bigger is better.
That is my humble opinion. AI will eventually enable the hearing aids to be smaller and even more effective.

@daveshaw I have used Rexton, Phonak, Oticon, Widex and Resound. Widex has worked far better for me than the others. This is a 'sticky issue' for me because my Cochlear processor is only compatible with ReSound. Another reality for CI folks is that different brands of CIs are compatible ONLY with one specific brand of hearing aid. Not fair; but reality.

At risk of being terribly repetitive, I must say again... Everyone's hearing loss is different. There is no one 'best brand' for everyone. Glad your Phonaks work well for you. Phonak brand has always had an excellent power telecoil.

Absolutely correct about stigma, size, etc. etc. etc. Who cares if their hearing aids are visible? Unfortunately, way too many do. I wonder how much progress that has prevented in research and of course in usage.

@julieo4 Unfortunately quite a bit. I just don’t understand the stigma. If your vision is poor you get glasses or I guess you could get contacts.
All my friends know I am hard of hearing and some should probably get tested for hearing aids. Once again the stigma rears its ugly head.
Good to hear from you again. You have had quite the weather recently. Hopefully you didn’t suffer flood damage.

Well, a couple of thoughts about the last few comments.

At my age, sad to say, I have to be aware of the cost of hearing aids. I now wear Audicus Spirits, which have served me fairly well, but they do not have any of the advanced AI features. All I did was to send in my last audiogram for them to use for programming. They also had a 2 year warranty, which was better than most at that time. I had to send them in twice the 2nd yr for repairs.

I am by no means well versed in high tech terminology, and the more I listen to videos by Dr. Cliff, Mathew Allsop, and others, the more confused I get. So, as far as asking a lot of questions to an audiologist, I would fall flat on my face. My best option is to get to a clinic and try different models for the best fit (if I can find one)

If you asked me what DNN360 is, for example, which is supposedly the next advancement, I would be at a loss. As a layman, I would probably say that it's an AI algorithm built in so that it tests sounds from every direction, figures out which are important, and ignores the rest, or at least minimizes them (ie. mimics the human brain)

To be frank, I believe we are in an age where AI is getting TOO powerful. I've read about what is called "the singularity point", which is a well known mathematical term for "becoming uncontrollable", such as when a 3 dimensional surface shoots off to infinity. If that point is reached, (some say within 10 years) we are in big trouble.
But, I digress. sorry

good Morning. Lynda here. I have a severe hearing loss caused by hereditary Otosclerosis. In the 50 years since diagnosis I have had surgery on both ears with hearing restored for 15 years then wearing hearing aids thereafter. I bought Signia Horizon IX aids about 9 months ago over the counter because they were supposedly the latest and greatest and gave me Bluetooth. BIG MISTAKE. At age 85 I have Essential Tremor, hands shaking so badly I can’t even write a check. So changing the Wax Guards on the In the Canal aids is almost impossible for me. So I didn’t. The In the Canal amplifier filled with wax and stopped working resulting in an $85 per ear charge to replace. I have gone back to my old Phonak Behind the Ear aids, but my hearing in church, restaurants and theaters is really poor. About 50%. since these were an OTC purchase there is no Audiologist to help me.

Any suggestions ???