The Emotional Side of Hearing Loss

Posted by Julie, Volunteer Mentor @julieo4, Jun 13 10:50am

Often those of us who experience hearing loss, especially that of adult onset, feel that no one understands what we are going through. It can affect our self esteem, along with decisions we make about our social lives, and even our work lives.

There is a new Facebook discussion group that addresses this subject. Having followed it the past few days, I realize how many people need to know they are not alone in dealing with this invisible disability. It's also obvious that many find general conversation about the emotional side of HL helpful. Sometimes we just need to talk.

If you're willing to share: How does hearing loss affect you emotionally?

Interested in more discussions like this? Go to the Hearing Loss group.

My hearing loss has been progressive, now I also have "word recognition" which hearing aids won't help. Often in a group setting people are talking, they think I'm hearing what they're saying but I'm not. Asking people to repeat what they said is mixed. Some will repeat, others are annoyed.
What I dislike the most is feeling shut out from what is going on around me. People who don't have a hearing issue really don't understand.
Wish the "word recognition" had some kind ofa solution.

REPLY
@julieo4

@charlene1961 You are very welcome. I hope your surgery goes well. I'd also like to 'second' the suggestion to look into a bi-cross hearing aid system that will bring sound from your poorer side to the better ear.

Prior to 1988 when the National Institutes of Health established the National Institute on Deafness & Communication Disorders (NIDCD) within, very little research was done on hearing issues. Consequently researchers have been playing catch up in this field. We can be thankful that so much research is taking place now. It will get even better in time.

Let us know what your ENT specialist says about bi-cross hearing aids.

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I will definitely let you know what he has to say regarding the bi-Cros hearing system. I will also be doing a research on this as I have never heard of this until you mentioned it yesterday.
Does it require a second hearing aid for the year with the lesser hearing?

REPLY
@charlene1961

I will definitely let you know what he has to say regarding the bi-Cros hearing system. I will also be doing a research on this as I have never heard of this until you mentioned it yesterday.
Does it require a second hearing aid for the year with the lesser hearing?

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@charlene1961

The BiCros has a receiver (similar to a hearing aid) which is worn in the ear with the worse or little hearing and transmits sounds to the other better ear where a regular hearing aid is normally worn. This is for people who may regularly wear 2 hearing aids and the aid in the bad ear is very limited or almost useless. Many stop wearing the aid in the bad ear and get by with wearing only the aid in the good ear.

If you have little or no hearing in one ear but perfect hearing in the good ear then the Cros receiver is worn in the bad ear. However you will still need a hearing aid in the good ear to receive the signals from the Cros receiver. That hearing aid is programmed for amplification. A lot of people dislike wearing 2 devices especially since the good ear is fine and they have now gone from wearing nothing to wearing 2 devices. But you need a device to receive the signals. My BiCross receiver is smaller than my regular hearing aid and a whole lot cheaper. There is a small bud like portion that sits at the edge of the ear canal and is attached to a small behind the ear device by a thin wire. Very comfortable and you forget it’s there. I would think that something similar would be worn on the perfect ear except that it is an actual hearing aid. This is a very comfortable solution.

Another alternative is a bone conduction implant mainly used for conductive as opposed to sensorineural hearing loss. I was evaluated for one one but did not qualify. The implantation is just under the skin and less invasive than a Cochlear Implant. This implant bypasses the parts of the ear that are not working and sends sound vibrations to the inner ear. People have raved about the Osia 2 implant and it’s more natural sound.

There is also something called the TransEar which uses the cochlear but is not appropriate for those with a narrow frequency range of bone conduction. I know I am not a candidate for that either. I believe the device is placed on the eardrum. There are very specific requirements for use and the TransEar has to be inserted by a doctor. I think I got that right.

Anyway, your regular audiologist will be able to help you with the BiCros and Cros system. For the Bone conduction devices you will be referred to an audiologist who usually handles Cochlear Implants and Bone conduction implants and those implants are performed by a doctor in the practice.

Hope I made sense and I would really push to try the BiCros/Cros system.

FL Mary

REPLY
@julieo4

Fast talkers are always a problem for people with hearing loss. Often, our grandkids are among them. It's so important to be upfront about your hearing loss. Say something like "I don't hear as well as I used to, please slow down a bit. because I want to hear you."

You are not 'deaf', but you need help if you want fluid communication. People tend to think that hearing aids bring back 20/20 hearing like eye glasses do for vision. They don't, they are 'aids' that help. Be willing to explain that. You know that background noise is a major culprit in distorting what those of us with hearing loss can understand. Try to arrange visits with others in quiet settings. Not always easy, but it helps a ton. People tend to appreciate it when we are upfront and honest.

Your church might consider installing a system. I'd be willing to bet there are other people in your small congregation who could benefit too. It's a matter of 'coming out' to share your needs. If you do that, others probably will too.

What a wonderful gift it would be to your church to start a fund to pay for an assistive listening system. An FM system would cost a few thousand dollars and would incude 2-4 receivers. (In my church, people purchased their own receivers after finding out how well they worked.) FM may not be the preferred system by everyone, but it works. If your hearing aids have telecoils, you can purchase a personal neckloop ($50 estimate) that works with your hearing aids to plug into the FM receivers. If no telecoils, it may mean wearing a headset provided with the FM receivers. You can purchase those too if you want your own.

To get the kind of accommodations hard of hearing people need, nearly always means you have to be open about your hearing loss rather than hiding it.

Are you willing to educate others while advocating for yourself?

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I am using my 3rd Hearing Aids which cost me $2,600. I am still not happen with it not to say the other two. Buying a new one is a waste of money.

BTW, I have yet to hear from anyone who is 85% happy with what he or she got!
Please reply if you are.

REPLY
@imallears

@charlene1961

The BiCros has a receiver (similar to a hearing aid) which is worn in the ear with the worse or little hearing and transmits sounds to the other better ear where a regular hearing aid is normally worn. This is for people who may regularly wear 2 hearing aids and the aid in the bad ear is very limited or almost useless. Many stop wearing the aid in the bad ear and get by with wearing only the aid in the good ear.

If you have little or no hearing in one ear but perfect hearing in the good ear then the Cros receiver is worn in the bad ear. However you will still need a hearing aid in the good ear to receive the signals from the Cros receiver. That hearing aid is programmed for amplification. A lot of people dislike wearing 2 devices especially since the good ear is fine and they have now gone from wearing nothing to wearing 2 devices. But you need a device to receive the signals. My BiCross receiver is smaller than my regular hearing aid and a whole lot cheaper. There is a small bud like portion that sits at the edge of the ear canal and is attached to a small behind the ear device by a thin wire. Very comfortable and you forget it’s there. I would think that something similar would be worn on the perfect ear except that it is an actual hearing aid. This is a very comfortable solution.

Another alternative is a bone conduction implant mainly used for conductive as opposed to sensorineural hearing loss. I was evaluated for one one but did not qualify. The implantation is just under the skin and less invasive than a Cochlear Implant. This implant bypasses the parts of the ear that are not working and sends sound vibrations to the inner ear. People have raved about the Osia 2 implant and it’s more natural sound.

There is also something called the TransEar which uses the cochlear but is not appropriate for those with a narrow frequency range of bone conduction. I know I am not a candidate for that either. I believe the device is placed on the eardrum. There are very specific requirements for use and the TransEar has to be inserted by a doctor. I think I got that right.

Anyway, your regular audiologist will be able to help you with the BiCros and Cros system. For the Bone conduction devices you will be referred to an audiologist who usually handles Cochlear Implants and Bone conduction implants and those implants are performed by a doctor in the practice.

Hope I made sense and I would really push to try the BiCros/Cros system.

FL Mary

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You have made perfect sense, thank you! I’m researching & educating myself about this so that I know what I’m talking about when I speak with my ear specialist.

REPLY
@ksly008

I am using my 3rd Hearing Aids which cost me $2,600. I am still not happen with it not to say the other two. Buying a new one is a waste of money.

BTW, I have yet to hear from anyone who is 85% happy with what he or she got!
Please reply if you are.

Jump to this post

@ksly008

Read my post about the BiCros aids I am wearing (actually a receiver and an aid). I am happy with my current devices. They have been reprogrammed and tweaked many times along with trialing the best molds for my bilateral profound hearing loss.

I don’t know if you have explained to your audiologist why they don’t work for you or have had any adjustments done. You don’t normally just purchase them and go without some sort of tweaking. Two people with the exact same audiogram will need entirely different adjustments .

You need to explain to the Audi as precisely as you can what the problem is, what kind of sounds you are hearing or not hearing, what situations they work well in and where they don’t. It might be that another brand is better suited for you. I tried Oticons recently and knew where they failed compared to my Phonaks and where they shined. I think our brains become use to one brand so I always good back to the Phonaks.

My Audi is an exceptionally good and patient programmer. That is so important.

My thoughts from a 40 plus user of hearing aids….

FL Mary

REPLY

Thanks Mary for your reply.
I watch TV with Volume 20+ and still unable to catch the speech where as my wife only used Volume 8. With my volumes, other sounds got amplified. With my HA's noise filter, it helps reduce the noise but still not to my satisfaction. I rate it 70% or less satisfactory.

I really like to talk to someone who have positive view on HA.

My first HA was Siemens and I paid $1500 out of pocket in 2015, then I had the second Signia also by the same company and paid $2,000 out of pocket. Then I bought the best one – Resound HA from Costco for $2,600 as I felt I had to pay the same price if I went with the company my insurance assigned as they marked up the price.

I believe there are 2 things needed to get a satisfactory HA to perform up to your satisfaction and there are inter-related. A decent HA is one: the unit should be able to automatically set your HA best on your HA testing data. That would require a very competent audiologist or the money paid will be wasted. And it is the hardest to find one.

After my first HA failed me, I thought I should get one audiologist who also wore a HA would solve the problem. I was wrong. The fact is: Remember when you have a hearing test, the audiologist would ask you to to repeat a word or a short phase. Imagine when I heard and said correctly but she heard what I said incorrectly. That was the problem.

Did you live in Los Angeles? If so, I would like to see your audiologist!

REPLY
@imallears

@ksly008

Read my post about the BiCros aids I am wearing (actually a receiver and an aid). I am happy with my current devices. They have been reprogrammed and tweaked many times along with trialing the best molds for my bilateral profound hearing loss.

I don’t know if you have explained to your audiologist why they don’t work for you or have had any adjustments done. You don’t normally just purchase them and go without some sort of tweaking. Two people with the exact same audiogram will need entirely different adjustments .

You need to explain to the Audi as precisely as you can what the problem is, what kind of sounds you are hearing or not hearing, what situations they work well in and where they don’t. It might be that another brand is better suited for you. I tried Oticons recently and knew where they failed compared to my Phonaks and where they shined. I think our brains become use to one brand so I always good back to the Phonaks.

My Audi is an exceptionally good and patient programmer. That is so important.

My thoughts from a 40 plus user of hearing aids….

FL Mary

Jump to this post

Thank you for your wisdom and experience sharing Mary. My experience mirrors yours quite a bit.

It's so important to have a provider that is willing to work with you when things aren't as expected. Everyone is different. Unfortunately, one of the similarities among people who are struggling with hearing loss is to be frustrated and displeased with the product and the provider.

Many whom I know have been very happy with hearing aids fit and provided by big box retailers like Costco. Others are not. The training of the fitter is extremely important as is that person's patience with the frustrated hearing aid buyer.

And yes, every person's hearing loss is unique. Some are far easier to fit than others. That's where the experience of the fitter comes in big. It's also where issues that go beyond basic hearing loss might be in play.

Fitting hearing aids properly is a skill, particularly when the person being fitted has a unique loss. Most progressive hearing loss is caused by noise exposure, drug interactions, or normal aging. However, it can sometimes be caused by medical issues that need treatment aside from hearing technology.

The audiology profession has had to adapt to a lot of changes. It's important for all of us to know that some of the fitters/providers have doctorate level degrees in the field, they are AuD (Doctors of Audiology), others may have a master's degree and be identified with the letters MS-CCCA or MA-CCCA for master's degree certified clinical competence in audiology.

Many who work as assistants or at the big box stores have far less education and are called 'hearing instrument specialists'. HIS requires no college degree at all, but training in the field as an apprentice.

If a person's hearing loss is not complex, basic amplification may be all that is needed. However, if it is more advanced and unique it may need many adjustments before it feels right.

Important though, is to understand that hearing aids do not 'cure' hearing loss. They do not fully correct it either. They are 'aids' to better hearing. People who adjust to using them usually find they are extremely helpful, and greatly missed when not available.

How do you react to suggestions provided by your provider? How does your provider react to the concerns you express at your appointment(s).

REPLY
@ksly008

Thanks Mary for your reply.
I watch TV with Volume 20+ and still unable to catch the speech where as my wife only used Volume 8. With my volumes, other sounds got amplified. With my HA's noise filter, it helps reduce the noise but still not to my satisfaction. I rate it 70% or less satisfactory.

I really like to talk to someone who have positive view on HA.

My first HA was Siemens and I paid $1500 out of pocket in 2015, then I had the second Signia also by the same company and paid $2,000 out of pocket. Then I bought the best one – Resound HA from Costco for $2,600 as I felt I had to pay the same price if I went with the company my insurance assigned as they marked up the price.

I believe there are 2 things needed to get a satisfactory HA to perform up to your satisfaction and there are inter-related. A decent HA is one: the unit should be able to automatically set your HA best on your HA testing data. That would require a very competent audiologist or the money paid will be wasted. And it is the hardest to find one.

After my first HA failed me, I thought I should get one audiologist who also wore a HA would solve the problem. I was wrong. The fact is: Remember when you have a hearing test, the audiologist would ask you to to repeat a word or a short phase. Imagine when I heard and said correctly but she heard what I said incorrectly. That was the problem.

Did you live in Los Angeles? If so, I would like to see your audiologist!

Jump to this post

@ksly008 Have you ever participated in an HLAA event? There are chapters in the LA area that are active and full of information. Chapters of the Hearing Loss Assn. of America, Inc. share information and experiences, including that about providers as well as about products. HLAA doesn't endorse either, but its members have a lot of information to share.

HLAA chapter meetings are open to anyone interested in learning more about how to live well with hearing loss. Check out the information at http://www.hearingloss.org HLAA holds conferences and conventions and is also a resource for a lot of podcasts on every topic imaginable when it comes to technology, research and personal experiences.

For some reason, probably because so many people refuse to talk about hearing loss, HLAA, which is a consumer based organization, is too much of a 'best kept secret'. It should not be. Are you familiar with this organization?

REPLY
@julieo4

Thank you for your wisdom and experience sharing Mary. My experience mirrors yours quite a bit.

It's so important to have a provider that is willing to work with you when things aren't as expected. Everyone is different. Unfortunately, one of the similarities among people who are struggling with hearing loss is to be frustrated and displeased with the product and the provider.

Many whom I know have been very happy with hearing aids fit and provided by big box retailers like Costco. Others are not. The training of the fitter is extremely important as is that person's patience with the frustrated hearing aid buyer.

And yes, every person's hearing loss is unique. Some are far easier to fit than others. That's where the experience of the fitter comes in big. It's also where issues that go beyond basic hearing loss might be in play.

Fitting hearing aids properly is a skill, particularly when the person being fitted has a unique loss. Most progressive hearing loss is caused by noise exposure, drug interactions, or normal aging. However, it can sometimes be caused by medical issues that need treatment aside from hearing technology.

The audiology profession has had to adapt to a lot of changes. It's important for all of us to know that some of the fitters/providers have doctorate level degrees in the field, they are AuD (Doctors of Audiology), others may have a master's degree and be identified with the letters MS-CCCA or MA-CCCA for master's degree certified clinical competence in audiology.

Many who work as assistants or at the big box stores have far less education and are called 'hearing instrument specialists'. HIS requires no college degree at all, but training in the field as an apprentice.

If a person's hearing loss is not complex, basic amplification may be all that is needed. However, if it is more advanced and unique it may need many adjustments before it feels right.

Important though, is to understand that hearing aids do not 'cure' hearing loss. They do not fully correct it either. They are 'aids' to better hearing. People who adjust to using them usually find they are extremely helpful, and greatly missed when not available.

How do you react to suggestions provided by your provider? How does your provider react to the concerns you express at your appointment(s).

Jump to this post

@julieo4

My Audi, I think, is unique in that she loves to hear any and all suggestions or just about anything I have to say. She knows I know a lot about hearing loss and that I can express precisely what I need. She has let me trial a few other brands (no payment required) knowing in her heart that they would not be as good a fit as the Phonaks and she was right. I needed to find out myself and then she took notes on the whys and whats of my experience.
She gets so excited when things turn out well and she has helped someone.
She was the one who researched molds for me and decided to go with a different company. The first new mold a couple of months ago didn’t work out so I did not pay for it. I actually cut it down because it was irritating and she has since ordered another one. I get a lot of goodies, batteries, tubing. I swapped some tubing last time that I don’t use anymore and she gave me some of what she had.
I know about her family and kids and she pretty much knows about me and what I do. So you can see this friendship developed over the years.
She’s passionate about her work and interested in anything I know that she doesn’t. She’s a great Audi and I have had one very good one , one excellent hearing aid specialist and one amazing hearing aid specialist….and then some awful or indifferent ones in the past.
So, if someone can’t get a recommendation, than it’s trial and error . If you are not happy with any of the aids you have bought from one provider and are not getting satisfaction, then it’s time to move on.
Someone new to hearing aids won’t know what to expect so it’s hard to judge sometimes. I have offered to go with anyone and sit in, if allowed, for first time buyers but no one has taken me up on that.

So much for a short answer
FL Mary

REPLY
@ksly008

Thanks Mary for your reply.
I watch TV with Volume 20+ and still unable to catch the speech where as my wife only used Volume 8. With my volumes, other sounds got amplified. With my HA's noise filter, it helps reduce the noise but still not to my satisfaction. I rate it 70% or less satisfactory.

I really like to talk to someone who have positive view on HA.

My first HA was Siemens and I paid $1500 out of pocket in 2015, then I had the second Signia also by the same company and paid $2,000 out of pocket. Then I bought the best one – Resound HA from Costco for $2,600 as I felt I had to pay the same price if I went with the company my insurance assigned as they marked up the price.

I believe there are 2 things needed to get a satisfactory HA to perform up to your satisfaction and there are inter-related. A decent HA is one: the unit should be able to automatically set your HA best on your HA testing data. That would require a very competent audiologist or the money paid will be wasted. And it is the hardest to find one.

After my first HA failed me, I thought I should get one audiologist who also wore a HA would solve the problem. I was wrong. The fact is: Remember when you have a hearing test, the audiologist would ask you to to repeat a word or a short phase. Imagine when I heard and said correctly but she heard what I said incorrectly. That was the problem.

Did you live in Los Angeles? If so, I would like to see your audiologist!

Jump to this post

@ksly008

I live in Florida …west coast…Tampa Bay Area. Everyone wants my Audi and I have referred people to her.

FL Mary

REPLY
@pokni

My hearing loss has been progressive, now I also have "word recognition" which hearing aids won't help. Often in a group setting people are talking, they think I'm hearing what they're saying but I'm not. Asking people to repeat what they said is mixed. Some will repeat, others are annoyed.
What I dislike the most is feeling shut out from what is going on around me. People who don't have a hearing issue really don't understand.
Wish the "word recognition" had some kind ofa solution.

Jump to this post

@pokni Poor word recognition is very common among people with sensorineural hearing loss. Perhaps you were originally diagnosed with conductive hearing loss, which is a condition that affects the middle ear. It can be helped considerably with pure amplification, so it's an easy hearing aid fit.

Sensorineural hearing loss (SNHL), which affects the inner ear/cochlea is a different story. It's also the most common type of hearing loss. It distorts speech as it eliminates certain sounds the cochlea cannot send to the brain for identification. Consequently, the brain is only getting part of the sounds that identify words. That affects word recognition.

Interestingly, there are predictable confusions. They are in the consonants in our language. We can hear the vowels easily because they require power in speech. A,E,I,O,U have power. The consonants, alone and combined, are softer sounds that are easy to mishear. S, V, TH, F, B, CH, L, R are examples.

Take a 4 syllable word and erase the consonants from it. Would you know what you heard if you only heard those vowels? Probably not. Now, use the same word and erase the vowels. The consonants are still there and you have a much better chance at understanding the word since consonants are the 'identifiers' in our language. Here's a word: i_ _o_ _i_ _ e It's 4 syllables with only vowels. Do you know what it is?

Here it is with no vowels; only consonants:
_mp_ss_bl_ Of course 'context' in the conversation is always a clue, but conversation goes so fast, we have trouble keeping up.

Back to the 'word recognition' issue. I've been using hearing aids for over 40 years. They are much better than they were back in the day. Of course, my hearing loss has gotten worse, so my word recognition scores deteriorated. Enter hearing aids used with add on assistive technology like a hearing loop, an FM system, mini microphone, etc. and my word recognition approved considerably.

It continued to deteriorate over the years until I was testing in the 20% correct range. It was time for me to get a cochlear implant. I did, and my word recognition now tests over 93%. It's less in noise, but is well over 60%, which is typical even for people who have good hearing. Background noise affects everyone, but people like us even more.

I encourage you to not give up. Your provider seems to be shutting you down. Has your provider ever discussed add on technology that will work with your hearing aids? Do you know what a PocketTalker is? Bluetooth accessories, hearing loop?

Ask about cochlear implants. Have they been mentioned?

REPLY
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