Does hearing loss research & development understand what we need?

Posted by Julie, Volunteer Mentor @julieo4, May 28 8:35am

On May 25th HLAA, in collaboration with the Federal Drug Administration (FDA), held an open webinar. The purpose of this 4 hour event was to provide an opportunity for people with hearing loss to share their experiences and concerns. Polls identified the greatest concerns hard of hearing people have, and identified their hopes for a future where hearing loss is better understood and treated with a higher priority.

Managing background noise was identified as the most frustrating issue people have whether they are using sophisticated hearing technology or not. This is no surprise to anyone with hearing loss. It is interesting to note, however, that developed technologies used for other purposes have managed to eliminate this problem. Broadcasters at major sports events do use equipment that minimizes background noise so their voices can be heard. Why is this kind of technology not used with hearing devices? Panelists expressed concern that miniaturization in development of hearing instruments was the focus, rather than focusing on making products better by eliminating this noise issue.

That is just one of the conversations held within the webinar. The transcript of this very interesting webinar will be posted at the HLAA website soon. Meanwhile, anyone who has concerns about treatment for hearing loss has an opportunity to comment via the website by answering a few of the posted questions you will find there. https://www.hearingloss.org/hlaa-pfdd/

They want to know what matters to us. The comment options is only available until June 25th. I hope you'll provide information to the FDA about your personal experiences.

A very hopeful part of this event included a discussion on potential cures for sensorineural hearing loss, something we have only dreamed about. It was pointed out that many dreams have come true in this field during the past 30 years. Speech to text apps, cochlear implants, realtime captioning, etc. We've come a long way, but there is a long way to go. Perhaps some of it relates the the fact that way too many hard of hearing people refuse to take action. They hide their hearing loss because society has stigmatized the condition. 80% of people who could benefit from hearing technology, do not have it. Only 5% of the people who could benefit from cochlear implants have them. We must let the FDA know more about how poor hearing affects our lives. As long as it is misunderstood, change and improvement will happen slowly.

@tonyinmi

@mickey5909, I did use my old aids when these had to go out for repair. My hearing loss is severe to profound so I need custom molds to get the needed power. It's harder to get decent loaners when a custom mold is needed. The hardest part to deal with was the lack of streaming from my phone with my old aids. My current aids stream whereas my older ones do not. I went back to my old self when wearing my old aids. I cringed when the phone rang since it was so hard to hear on the phone.
Tony in Michigan

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I am right there with you. My new aids are the same with streaming. I also have severe to profound loss and cannot hear much of anything without my hearing aids. That's why I kept the old ones so I at least was able to hear something, but it definitely was not the same. I missed the streaming in my hearing aids and struggled a lot with my zoom meetings for work without my new ones.

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@sweetlaurie

I would like to see the invention of a hearing aid that you could just place in your ear with a wire attached to it so you could remove from your ear instead of the thing that goes over the outside of the ear.

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@sweetlaurie
Hi,

I don’t know if you wear hearing aids but there are many different types. The In the ear canal aid and completely invisible in the ear canal aid have little strings to pull them out. There are larger aids that you place in the ear and are easy to remove. They don’t need strings. The thing that you are referring to that goes outside the ear is called a BTE..behind the ear aid…that’s the part that houses the microchips…the “electronics” of the hearing aid with a tube or wire attached to a mold or dome that is inserted in the ear. Each type is for different degrees of hearing loss. BTEs are usually prescribed for people with severe to profound loss as they are more powerful and necessary and those with profound loss would get less of a benefit from smaller aids.

FL Mary

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My hearing loss has remained mild to moderate over the past 15 years. My audiologist has a $6,000 hearing aid ready for me that amplifies sound (I know that because one of his tests was how comfortable I was at different levels of "louder"). I enjoy Andy Griffith reruns cause I can hear them and baseball games as well. I can hardly understand someone on a cell phone but much better speaking on landline phones. Anything louder than normal is irritating. If folks talk a bit slower and/or remove masks, I can hear them. I hear much better on analog equipment than digital. All this equals something called "recruitment." Most ENTs and audiologist have either never heard of it, or totally ignore it in conversation. Too bad. Folks think I don't wear a hearing aid out of some kind of vanity and so resent it when I ask them to please repeat. My audiologist feels that a device that amplifies will "help" me communicate better when out in public. While I would tend to agree with him, the irritation factor is a price I will have to pay for others comfort. I can still hear and enjoy the birds without a hearing aid, so what do I do? With my tinnitus, it's as though I were trying to hear with a tightly fitted pail over my head. And why is it that the noise from my electric toothbrush drowns out sound on one side of my mouth only?

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@sweetlaurie

I would like to see the invention of a hearing aid that you could just place in your ear with a wire attached to it so you could remove from your ear instead of the thing that goes over the outside of the ear.

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@sweetlaurie, there are In The Canal (ITC) aids that are barely visible. All the electronics are contained in the mold. There's also half shell and full shell devices that do not have the electronics that hang on the ear. They are not as invisible as an ITC. Depending on the degree of your hearing loss, an ITC may not be a good option. Smaller is not better when it comes to hearing aids. If you need a lot of power or you want certain features, such as a telecoil, a smaller aid is not even an option.
Tony in Michigan

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@trishanna

My hearing loss has remained mild to moderate over the past 15 years. My audiologist has a $6,000 hearing aid ready for me that amplifies sound (I know that because one of his tests was how comfortable I was at different levels of "louder"). I enjoy Andy Griffith reruns cause I can hear them and baseball games as well. I can hardly understand someone on a cell phone but much better speaking on landline phones. Anything louder than normal is irritating. If folks talk a bit slower and/or remove masks, I can hear them. I hear much better on analog equipment than digital. All this equals something called "recruitment." Most ENTs and audiologist have either never heard of it, or totally ignore it in conversation. Too bad. Folks think I don't wear a hearing aid out of some kind of vanity and so resent it when I ask them to please repeat. My audiologist feels that a device that amplifies will "help" me communicate better when out in public. While I would tend to agree with him, the irritation factor is a price I will have to pay for others comfort. I can still hear and enjoy the birds without a hearing aid, so what do I do? With my tinnitus, it's as though I were trying to hear with a tightly fitted pail over my head. And why is it that the noise from my electric toothbrush drowns out sound on one side of my mouth only?

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Have you gone to Costco? They have great hearing aids, high end, for about $1500 and they come with a great warranty.

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@trishanna

My hearing loss has remained mild to moderate over the past 15 years. My audiologist has a $6,000 hearing aid ready for me that amplifies sound (I know that because one of his tests was how comfortable I was at different levels of "louder"). I enjoy Andy Griffith reruns cause I can hear them and baseball games as well. I can hardly understand someone on a cell phone but much better speaking on landline phones. Anything louder than normal is irritating. If folks talk a bit slower and/or remove masks, I can hear them. I hear much better on analog equipment than digital. All this equals something called "recruitment." Most ENTs and audiologist have either never heard of it, or totally ignore it in conversation. Too bad. Folks think I don't wear a hearing aid out of some kind of vanity and so resent it when I ask them to please repeat. My audiologist feels that a device that amplifies will "help" me communicate better when out in public. While I would tend to agree with him, the irritation factor is a price I will have to pay for others comfort. I can still hear and enjoy the birds without a hearing aid, so what do I do? With my tinnitus, it's as though I were trying to hear with a tightly fitted pail over my head. And why is it that the noise from my electric toothbrush drowns out sound on one side of my mouth only?

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Those $6000 hearing aids will do more than amplify, but you will have to learn how to use them. They will have blue tooth connectivity that will allow you to hear the cell phone via streaming, and a lot of other things. Bluetooth adds considerable cost to hearing aids. Your audiologist should spend the time it takes to teach you about all the bells and whistles that come with that level of hearing instruments. They should also have telecoils, which add less than $10 to the price of a hearing aid, that will allow you to connect to hearing loops.This 'older' technology works better than BT does for many people.

You say your hearing loss is mild to moderate, and it doesn't seem as if it has gotten worse over 15 years. If you take those hearing aids for trial be sure to try them in every possible setting. The standard trial period is only 30 days, which may not be long enough to truly test them. Before that time is up, you will have to decide whether or not to return them and get your money back.

I do not promote 'big box' hearing aids, but I respect the fact that Costco allows a much longer trial period. I believe it's 6 months. That is a huge plus. Most of the people who fit hearing aids at those 'big box' stores are not audiologists. They are hearing instruments specialists. Much of the programming is done by computer, based on your audiogram. Ask you audiologist for a copy of your audiogram. If you decide to go elsewhere you will already have that piece of the information needed to fit hearing aids elsewhere.

Audiologists have very sophisticated technology to test hearing and fit hearing aids. After fitting, it is up to you to decide whether or not the technology helps.

Keep us posted. My hope is that whatever you do will take the pressure off of you socially. Recruitment is real, so is tinnitus. Learning to live well with hearing loss and all it's side issues takes a lot of courage. Be strong. and be objective.

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My audiologist says that a REM is not needed. I think that Costco doesn’t provide that as well. Is it necessary? I have assumed that Costco did not perform certain tests that an audiologist and thus part of the price for a $6000 hearing aid includes professional level fitting.

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@kem

My audiologist says that a REM is not needed. I think that Costco doesn’t provide that as well. Is it necessary? I have assumed that Costco did not perform certain tests that an audiologist and thus part of the price for a $6000 hearing aid includes professional level fitting.

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People with mild/moderate hearing loss have very different needs than those of us with severe/profound loss. Far too many hearing aids end up in dresser drawers rather than on ears.

How long does it take for a person, newly fit with hearing aids, to learn to use them properly and to hear well with them? Why do most audiology practices only allow a 30 day trial period? How can Costco allow 180 days?

Regardless of the length of a trial period, it means nothing if the person doesn't get out and try those hearing instruments in a variety of settings. Work, social, family gatherings, performing arts, hobbies, etc. That has been especially difficult during COVID, but even in typical times people don't have time to do all that should be done in one month.

I sure don't know the answers, but am hearing more and more from people who are very happy with less costly hearing aids.

A very interesting research article published by Stanford University pointed out that for many people hearing aids were the third most costly investment they will ever make; after house and automobile. Yikes!! Affording hearing aids isn't a given for far too many people.

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@kem

My audiologist says that a REM is not needed. I think that Costco doesn’t provide that as well. Is it necessary? I have assumed that Costco did not perform certain tests that an audiologist and thus part of the price for a $6000 hearing aid includes professional level fitting.

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@kem, REM is an audiology best practice. If your audiologist does not think it's necessary, maybe you should consider going to a different audiologist. REM is a separate piece of hardware that the audi needs to purchase. It also takes time but ensures the output of the hearing aid is what it's supposed to be.
Tony in Michigan

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I highly recommend viewing DrCliffAuD VLOG on YouTube. His videos address Bet Practices as well as the features of the newest hearing aid releases for 2021 by brand and type. He educates those of us with hearing loss about the importance of having a trained audiologist familiar with your needs and the brand of aids you are considering to assure the best outcome. His videos are extremely helpful in comparing brands and features of each tier of performance.
Here is the link for his best practices video which includes a link to his website with a printable check list to take along when seeing a hearing professional. He encourages calling clinics and practices to inquire about whether they use abide by these practices. https://youtu.be/obE9_uWkGZ4 He has many fascinating and informative videos that provide information in a comparative way that its difficult to find anywhere else. Sandra

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In addition, here is a link to a report on Costco's hearing aid options: models, features, prices, reviews. https://www.hearingtracker.com/hearing-aids/costco This includes a link to a Dr Clif video specifically discussing Costco hearing aid offerings, although it reviews the last iteration, not the newest and present models there.
Costco definitely offers incredible value! However, it's possible it may not offer the best option for those with profound loss or more serious and/or complicated hearing loss situations that can require more personalized and specific refining of the software for best results.

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@sunnyone

I highly recommend viewing DrCliffAuD VLOG on YouTube. His videos address Bet Practices as well as the features of the newest hearing aid releases for 2021 by brand and type. He educates those of us with hearing loss about the importance of having a trained audiologist familiar with your needs and the brand of aids you are considering to assure the best outcome. His videos are extremely helpful in comparing brands and features of each tier of performance.
Here is the link for his best practices video which includes a link to his website with a printable check list to take along when seeing a hearing professional. He encourages calling clinics and practices to inquire about whether they use abide by these practices. https://youtu.be/obE9_uWkGZ4 He has many fascinating and informative videos that provide information in a comparative way that its difficult to find anywhere else. Sandra

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Thank you for sharing the link to Dr. Cliff's Youtube videos. He has some excellent information to share, with a lot of good advice. I am following a couple of friends who purchased their hearing instruments at Costco. Both of them are 'newbies' who have purchased their first set of hearing aids there. Both are very happy with them and are still in their 180 day trial period. . Again, that trial period is so important. Use it wisely regardless of where you purchase the product. And if something isn't working the way you think it should, go back to the provider so they can make adjustments. It's a complex process and you want to get it right.

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