Advice on dealing with hearing loss

[LucyD]

I am a 46 year old female and was diagnosed 2 years ago as having severe otocolerosis. I am not a candidate for surgery because there has been some damage to the nerve in my right ear.

I suspected that I had a hearing problem for many years, but I am having a tough time getting over the fact that I need hearing aids. In my mind that is for older people not me! I feel that I can deal with the hearing loss yet I get frustrated at work especially during meetings and find myself asking people to repeat themselves alot or I misunderstand what is being said. I avoid people who are soft spoken and who I find mumble because I have trouble hearing them.

I am looking to get some hearing aids but I am afraid if I wear them continuously then I will absolutely will not be able to hear anything without them and that my hearing loss will get worse.

Any advice would be appreciated.

[Um bongo]

I am a 46 year old female and was diagnosed 2 years ago as having severe otocolerosis. I am not a candidate for surgery because there has been some damage to the nerve in my right ear.

I suspected that I had a hearing problem for many years, but I am having a tough time getting over the fact that I need hearing aids. In my mind that is for older people not me! I feel that I can deal with the hearing loss yet I get frustrated at work especially during meetings and find myself asking people to repeat themselves alot or I misunderstand what is being said. I avoid people who are soft spoken and who I find mumble because I have trouble hearing them.

I am looking to get some hearing aids but I am afraid if I wear them continuously then I will absolutely will not be able to hear anything without them and that my hearing loss will get worse.

Any advice would be appreciated.

For starters, hearing aids do not make your hearing worse. You might come to appreciate and acclimate to the improvement you get, but you have to consider them as a positive step on the way to improving your ability to communicate and connect socially.

You are acknowledging that there is an issue, which is the first step. Get tested, seek advice on the ways forward and then take the plunge once you are armed with the information you need about the severity of your loss and the complexity of the communication environments you experience.

[seb]

LucyD,
I say get the hearing aids and see how they work. Most places will give you at least a 30 day trial and if you have a Costco nearby they will give you 90 days for the trial. The benefits will outnumber negatives regarding wearing HA; you wont have to ask people to repeat themselves as often, you will hear soft speakers better and the mumblers will be easier to hear. As for HA being for older people I know a lot of kids that wear HA and there are many many people in their 30's,40's and 50's who either wear HA or need HA and don't have them, so don't feel you are alone. As for people looking down on you for wearing HA forget about it, no one will care and most won't know you have them unless you tell them. There will be an adjustment period but once you get used to them you will wonder how you got by so long without them. So don't look back but only ahead and good luck!

[Gittje]

My advice is to try a set anyway.
I fully agree, you have nothing to lose to give it a try.

My biggest problem is not to wear hearing aids at a younger age, but to experience that "aids" are just that and do not have the same possibilities and flexibility as natural ears.

[lohearn]

My biggest problem is not to wear hearing aids at a younger age, but to experience that "aids" are just that and do not have the same possibilities and flexibility as natural ears.

Perfectly said!

The audi I saw at Mass Eye and Ear explained this well and she also explained this is why a lot of people with a unilateral loss (like me) struggle with an aid in their bad ear. Since I have one ear that hears perfectly, the other ear is as much of a distraction/hindrance aided as it is non-aided since it will never hear like the good ear does.

LucyD, is your loss unilateral (one ear) or bilateral (both ears)? I too have some nerve damage and I was still a candidate for surgery. My hearing loss was from a head trauma though, not otosclerosis. My surgery also failed to give me back the degree of hearing they hoped I'd have.

[LucyD]

lohearn, my hearing loss is bilateral. However, I also have nerve damage in my left ear which according to 2 ENT's my hearing would not improve from surgery and I would still need HA's.

I have have been to 2 different ENT's and both have given me the same prognosis.

[lohearn]

lohearn, my hearing loss is bilateral. However, I also have nerve damage in my left ear which according to 2 ENT's my hearing would not improve from surgery and I would still need HA's.

I have have been to 2 different ENT's and both have given me the same prognosis.

Do you have your hearing test numbers? Just from what you've said it sounds like the air/bone gap isn't great enough to attempt surgery on the left ear, what about the right ear?

My son has otosclerosis, so far affecting only his left ear. He is 17 and has been very slowly losing the hearing in that ear since he was a young child. Once diagnosed, it made sense that when we called his name when he was out playing with friends he would just stand there turning in a circle to look for where the sound was coming from. With the unilateral hearing loss he lost stereo hearing which affected his ability to perceive where sounds originate from. He has an aid for the left ear but does not wear it.

As his parent I decided with his input that the decision to have surgery or not should be his. He'll be 18 in 6 months and if he chooses to have surgery it's his choice. His loss when he was younger wasn't that bad, but as the years pass his hearing gets worse and worse.

I can't put myself in your shoes, but if my right ear could be fixed with surgery to normal/near normal hearing I'd seriously consider it. Then I would decide on whether or not to get a hearing aid for the left ear. I would go to the best specialist around to have it done though since it is the ear that hears the best and a surgical mistake would take away the hearing in my good ear.

Without your numbers it's hard to say too. But the hearing aids won't make your hearing worse. But when you take them out things will *seem* worse and quieter than the way you are used to hearing now because you will have adapted to hearing things again.

[LucyD]

It is my right ear not left that has the nerve damage.


My current numbers are

250..500...1000...2000...4000....6000...8000
L. 5... 5.......20.....55......85........90.....90
R. 55...55.....50.....75......85........90.....90

[lohearn]

It is my right ear not left that has the nerve damage.


My current numbers are

250..500...1000...2000...4000....6000...8000
L. 5... 5.......20.....55......85........90.....90
R. 55...55.....50.....75......85........90.....90

Hi Lucy,

Does your hearing test also show the bone conduction numbers? The difference between the air conduction (the numbers you posted) and the bone conduction can vary greatly.

My numbers for my left ear:
...0250..0500..1000..1500...2000...2500....4000
L...10.....10......10.....25...............45..... ..30..Bone Conduction
L...50.....35......30..............40............. ...50...Air Conduction

In my case, I do have some nerve damage on my left side but it is not that great. My otologost (ears only, these are doctors who are ENTs but then further sub-specialized to work only with the ears) attempted with my surgery to correct my conductive loss (the air numbers) which would have left me with a mild to moderate hearing loss in that ear. Unfortunately for me the surgery did not fix the conductive loss, but I haven't given up yet!

Your case may be that the bone conduction and air conduction are a lot closer to being the same numbers, meaning that yeah surgery won't help you in that ear. Now what about your left ear? If there is no nerve damage there that ear may be helped with surgery.

I know I sound like I'm pushing for the surgery, I'm not really. I'm just making sure that you fully explore ALL your options before you spend an enormous amount of money and time getting the right hearing aids. The local audiologist that I first saw for my hearing issue said to me "you do not want to go local for this issue, go to Mass Eye and Ear and see an otologoist". And this is from an audiologist working in a local ENTs office!

And yes, hearing aids do sound like something made only for the old folks. I thought that too until my son was diagnosed with otosclerosis at (I think) 11 years old. I'm 48, and if it weren't for the "swan dive" into my porch this past January I would not have any hearing issue at all.

[JeepGirl]

LucyD,

Hang in there girl, I am 34 with hearing loss from an illness and will soon be getting my first hearing aid. H.A.'s are not just for more experienced adults, I have a friend in her twenties who wears one too. I have learned from her how to deal with all the hearing jokes people make. I applaud you for seeking treatment for your hearing loss.

[iceman0486]

The youngest I have fit was 7 or 8, the oldest in her mid 90s. Hearing aids are for people who need help hearing better. Specialists and audiologits have been battling that stigma against hearing aids for years and I think it is slowly getting better.

LucyD, hearing aids will not make your hearing worse, though your perception may seem off. But that is simply because you get used to what is closer to normal, and then notice the difference when you take them off. Unaided hearing is "normal" to you. For the first week or two, the aids may feel loud and then normalize (with regular use) and then when you take them off, the world is quiet. It is no different than before - you just know what you are missing.

[silvergirlk30]

I say get the hearing aids. Why miss out on stuff you dont have to? I have a severe hearing loss due to annual ear infections since I was 2. Due to regular usage of hearing aids and moving to florida (so I wouldnt get ear infections) I have a very slow decline in hearing loss now.

[katedec15]

Hi everyone,
I hope no one is offended by my questions, as I was kicked off a similar website for asking this.....

I'm a senior in college studying communication disorders and audiology, I hope to go to grad school and one day be an audiologist of speech pathologist. As part of an assignment for my Aural Rehabilatation class, I was asked to conduct a short interview with a person who has a hearing loss. Unfortunately, the only person I know with a hearing loss, my grandmother, has since passed. Would anybody be willing to answer some questions. I would greatly appreciate it.

No worries if not.
-Kate

[DocAudio]

Hi everyone,
I hope no one is offended by my questions, as I was kicked off a similar website for asking this.....

I'm a senior in college studying communication disorders and audiology, I hope to go to grad school and one day be an audiologist of speech pathologist. As part of an assignment for my Aural Rehabilatation class, I was asked to conduct a short interview with a person who has a hearing loss. Unfortunately, the only person I know with a hearing loss, my grandmother, has since passed. Would anybody be willing to answer some questions. I would greatly appreciate it.

No worries if not.
-Kate

Many students will come on the board and ask the same thing. I suggest using the search tool at the top to find some other threads that may have additional information but I found one for you that might give you some of what you need:

Try here (http://www.hearingaidforums.com/showthread.php?t=5953&highlight=interviews+people)

[dustinsipes]

The best way to prevent hearing loss is to avoid loud noise whenever possible. When you have to be in a loud environment the use of hearing protection, such as simple foam earplugs will give you the best chance to preserve your hearing. Especially when you are around the noise for long periods of time. Noise induced hearing loss is usually permanent, so prevention is very important.
I would suggest the help of hearing aids (http://www.metrohearing.com/digital-hearing-aids.html). There are many factors to consider when choosing a specific brand or style of hearing aid. The most important include the degree and type of your hearing loss, the physical shape and size of your ears and your lifestyle.

[iceman0486]

When we're dealing with otosclerosis, it isn't just the air/bone scores we need to consider when we look at aids. My main concern is going to be the speech discrim score for the worse side.

[Overoaked]

LucyD,

Blunt observations and opinions based mainly on your audiogram:

1. Your hearing is pretty bad.
2. You are missing out on a lot; at work and perhaps socially.
3. You need hearing aids.
4. Your ability to hear people better (but never perfectly) will completly offset any stigma of wearing HAs. People's opinion of you is more negatively affected by your (probably obvious) inability to hear them than their reaction when they notice those things in your ears. You may become good friends with some of those soft spoken people you are currently avoiding.
5. As others have stated, HAs will not make your hearing worse.
6. Be prepared for initial disappointments and frustrations when you are first fitted with HAs. They will not restore perfect hearing. Things you don't want to hear will sound way louder, and things you do want to hear will sound a little louder. But you will adjust to this and you will eventually conclude that life with the HAs is better than life was without the HAs.
7. Even though you've seen two ENTs, I recommend that you continue to explore your otosclerosis and a possible stapedetomy. More on this complicated subject below.
8. 46 isn't that young. I started wearing HAs at 39 when I was single and dating (at least trying to).

Can you elaborate on "...because there has been some damage to the nerve in my right ear"? Is this because the "nerve damage" somehow makes stapedetomy surgery difficult? Or is it because your otosclerosis has caused lots of nerve loss in addition to conductive loss (which is often the case). As you have probably learned, stapedetomy surgery involves some risks of undesirable side effects and/or providing little or no benefit, but if recommended by an experienced surgeon, the odds are that it will help your hearing. FYI, I have had 3 stapedetomies 2R + 1L).


(Hz) L(dB) R(dB)
250 40 50
500 55 65
1K 55 60
2K 60 60
4K 70 70
8K 90 100
L: 88% SDat80dB
R: 64% SDat85dB

[lepetitoeuf]

I suspected that I had a hearing problem for many years, but I am having a tough time getting over the fact that I need hearing aids. In my mind that is for older people not me! I feel that I can deal with the hearing loss yet I get frustrated at work especially during meetings and find myself asking people to repeat themselves alot or I misunderstand what is being said. I avoid people who are soft spoken and who I find mumble because I have trouble hearing them.

Here's my perspective.

Just last week I had my first aids fitted at the age of 34, I'd been putting it off for quite a while, years infact. I was happy with my hearing loss, if life didn't require interaction with other people then I wouldn't have hearing aids now. But I was missing out on life; conversations in restaurants, people in meetings, voices on TV, all those things you know about.

It seems people focus on the hearing aids themselves, the actual items that you stick on/in your ear. But I think that the emotional journey is a far greater step. You can get some aids ordered and fitted within days, and there's a good chance they'll do a great job of allowing you to hear all those furtive sounds you've missed. That's the easy part of getting hearing aids.

I went to a few audiologists and one commented that they don't deal with many people my age. Pretty insensitive when you consider that most people, regardless of age are unlikely to be happy about having hearing aids fitted and the younger people are, the more sensitive they're likely to be. Singling me out didn't help their sales pitch.

But, despite being a statistic, hearing aids will change your life for the better. Just be ready to have a fight with your emotions. It can be very hard going through with this, god knows how many people out there don't, purely because of the feelings you've voiced. Talk your emotions through with someone close to you, take someone along to audiologist appointments/hearing aid fittings. Be open with people and give yourself time to adjust. Becoming dependent on something to live your life is probably the hardest thing to adjust to.

Ultimately, regardless of the stigma attached to them, hearing aids will enhance your quality of life. So take a deep breath, think of yourself, and keep us posted on your progress.

[Don]

Here's my perspective.

Just last week I had my first aids fitted at the age of 34, I'd been putting it off for quite a while, years infact. I was happy with my hearing loss, if life didn't require interaction with other people then I wouldn't have hearing aids now. But I was missing out on life; conversations in restaurants, people in meetings, voices on TV, all those things you know about.

It seems people focus on the hearing aids themselves, the actual items that you stick on/in your ear. But I think that the emotional journey is a far greater step. You can get some aids ordered and fitted within days, and there's a good chance they'll do a great job of allowing you to hear all those furtive sounds you've missed. That's the easy part of getting hearing aids.

I went to a few audiologists and one commented that they don't deal with many people my age. Pretty insensitive when you consider that most people, regardless of age are unlikely to be happy about having hearing aids fitted and the younger people are, the more sensitive they're likely to be. Singling me out didn't help their sales pitch.

But, despite being a statistic, hearing aids will change your life for the better. Just be ready to have a fight with your emotions. It can be very hard going through with this, god knows how many people out there don't, purely because of the feelings you've voiced. Talk your emotions through with someone close to you, take someone along to audiologist appointments/hearing aid fittings. Be open with people and give yourself time to adjust. Becoming dependent on something to live your life is probably the hardest thing to adjust to.

Ultimately, regardless of the stigma attached to them, hearing aids will enhance your quality of life. So take a deep breath, think of yourself, and keep us posted on your progress.

Agree! Well done.

[mackwilson755]

Hi
You have to very careful about your ear.
You have to clean it and can concern with your family doctor.
You can apply home made tips too like you can use oil to clean ear etc.:)

[Brooke]

I bought a set of oticon delta 6000 back in 2008. Never wore them. Wasn't ready and it was overwhelming sound. Now I'm ready but the new test shows I've lost more hearing.

My question is, with my kind of loss, would just tuning up the oticons be an option or has there been too many improvements to ignore and buy a better/new set of hearing aids.

Appreciate your replies.

[seb]

Brooke,
There have been several people on the HA Forum in the past that really liked their Delta's and were sorry when they lost them or they broke and they didn't like their new HA as much as they liked the Delta's, so it probably wouldn't hurt to get them reprogrammed and see how they work out. Good luck!

[brussell]

I bought a set of oticon delta 6000 back in 2008. Never wore them. Wasn't ready and it was overwhelming sound. Now I'm ready but the new test shows I've lost more hearing.

My question is, with my kind of loss, would just tuning up the oticons be an option or has there been too many improvements to ignore and buy a better/new set of hearing aids.

Appreciate your replies.
Hey everyone. I'm a new member here, I dont know if you are impartial to the "new people" making suggestions or not, but I feel I'm going as far to put you at a disadvantage if I do not at least let you guys know of the Esteem technology by the Envoy Medical Company. As soon as I heard about this and PERSONALLY looked into it, I realized that this WILL be like the new 'lasik surgery of the ears'. The Esteem Hearing Implant is a fully implantable device that uses your NATURAL ANATOMY as a microphone, rather than puting hardware in your hearing canal. And no, this is nothing like a cochlear implant. It is completely, 100% invisible (because it's fully implantable), and the implant is completely reversable. Here, please look at this quick video link so you can see what im talking about, its about a minute long and shows just how revolutionary and powerful this technology really is, and then if you are not interested dont read my next post.

(it wont let me post url because im new so: GO to youtube. Enter in search: "29 years old and hearing myself for the first time)
^^^^^ Sarah Esteems viral youtube video (over 12,000,000 views)

[brussell]

OK. SO. If you are reading this that means you are now aware of the amazing new Esteem Hearing Implant by Envoy Medical. The Esteem Hearing implant won a 15-0 vote of approval by the FDA board about 2 years ago. The device was voted by Google, the most important technology of 2011. FOR ANYONE WHO IS A VETERAN, ENVOY MEDICAL BEGAN WORKING WITH THE DEPARTMENT OF VETERANS AFFAIRS AND IMPLANTING VETERANS AND ACTIVE DUTY ( already effectively restoring many veterans war-damaged hearing )

About the Esteem: The Esteem is the only fully implantable prosthetic hearing restoration device for sensorineural hearing loss that uses the natural ear as a microphone. It is a prosthetic hearing restoration device designed to help improve the hearing of adults with moderate to severe hearing loss. The technology consists of the Sound Processor, implanted behind the ear in the matoid, and two transducers (called the Sensor and the Driver) that are implanted in the middle ear. Because all of the parts of Esteem are implanted, Esteem is invisible to you and others. The materials used to make Esteem have been proven safe and reliable in millions of pacemakers and other implanted medical devices. Esteem USES YOUR OWN EARDRUM AS A NATURAL MICROPHONE, picking up the sounds through the ear canal, thereby using the body's natural anatomy to reduce background noise, distortion and acoustic feedback that people experience with conventional hearing aids. The battery of the Esteem never needs recharging. The battery life will vary depending on the number of hours the device is left on and the average noise level the Esteem is exposed to during the day, but the average life is 7 years, and as long as 9 years. The Esteem will remain on as long as the patient does not turn the implant off by using the Personal Programme to switch to the Standbye Mode. Unlike hearing aids and partially implantable devices, the patient has the option of LEAVING THE DEVICE ON 24 HOURS 7 DAYS A WEEK. THE FULLY IMPLANTABLE ESTEEM DOES NOT HAVE TO BR TURNED OFF DURING A SHOWER OR WHILE THE PATIENT SLEEPS, SWIMS, OR PARTICIPATES IN OTHER PHYSICAL ACTIVITIES. HEAR ALL THE TIME.

Implant Operation: The Surgery For Esteem implantation involves the usual techniques for mastoid ear surgery in addition to an extended facial recess surgical approach to access the ossicular chain. An incision is made behind the ear to allow access to the middle ear space. During the implant procedure, the ossicular chain is disarticulated (surgically seperated). The tip of the Sensor and Driver extend into the middle ear. The surgeon connects the Sensor and Driver to your incus and stapes, respectively. The Sound Processor is implanted behind the ear, under the scalp. Insulated wires connect the Sound Processor to the Sensor and Driver. For approximately sixt to eight weeks after surgery,m you will not be able to hear through the earin which Esteem is implanted. This is due to the fact the your Esteem will not yet be activated. Your physician will determine when Esteem can be "turned-on" or activated. After it is implanted, Esteem is completely invisible to others, and does not interfere with bathing, showering, swimming, or other normal physical activities.

Remember everyone, this device and procedure is so so new that most people have no idea it is even an option. Please copy and paste the information, even if it's only the video so people know their only options are not something completely perminant like CI, or something inadequate like an aid.

CONTACT INFORMATION
Website: www(.)envoymedical(.)com < it will not let me insert url
Phone: 888-856-8093
Envoy's VA Sales Rep: 713-806-1914 , brussell@envoymedical.com (brussell@envoymedical.com)

^ He deals with anyone calling for imformation, but in the even that you are a Veteran and need to go through the VA, he is the only one in the company you deal with.

[seb]

I believe there was a thread about the Esteem last year and what most people had a problem with was it cost something like $30,000 per ear and had to have new batteries installed every couple of years at a cost of something like $10,000. My numbers might be off but not by much.

[brussell]

I believe there was a thread about the Esteem last year and what most people had a problem with was it cost something like $30,000 per ear and had to have new batteries installed every couple of years at a cost of something like $10,000. My numbers might be off but not by much.


Yes. Your numbers are off. The device actually costs $33,000 per ear initially. The batteries right now last on average 7-9 years and when the battery is changed out is it substancially less than that. But.... how much are you spending on hearing aids, and batteries, and audilogists, and maintanance. And how much relief do you get out of hearing aids. You may think what you want. Im telling you I have personally spoken with so many patients installed with the Esteem and every single one of the has agreed on the statement " If people with hearing aids cold only exchange them for what I hear for 10 seconds(with Esteem Hearing implant) they would immediately begin finding a way to fit it in their budget". They have payment plans and financing too which is pretty cool. Just pass it on.
If you have some kind of health insurance in Alabama then they cover the Esteem Implant, and If you work for AT&T and use their health insurance youo get covered.

[prodigyplace]

Yes. Your numbers are off. The device actually costs $33,000 per ear initially. The batteries right now last on average 7-9 years and when the battery is changed out is it substancially less than that. But.... how much are you spending on hearing aids, and batteries, and audilogists, and maintanance. And how much relief do you get out of hearing aids. You may think what you want. Im telling you I have personally spoken with so many patients installed with the Esteem and every single one of the has agreed on the statement " If people with hearing aids cold only exchange them for what I hear for 10 seconds(with Esteem Hearing implant) they would immediately begin finding a way to fit it in their budget". They have payment plans and financing too which is pretty cool. Just pass it on.
If you have some kind of health insurance in Alabama then they cover the Esteem Implant, and If you work for AT&T and use their health insurance youo get covered. With my old aids that lasted 8 years, I spent a little over $5000, plus the cost of batteries. I just recently replaced them with top of the line aids for another $5000.

It appears, as seb was implying, your product is still way too expensive for the market.

By the way, professionals here are expected to assist users impartially. This is not a forum to market your product.

[brussell]

Heys guys.... first... not my product. Second.... the results from hearing aids and the result from the Esteem Hearing Implant (Ive talked to more patients than i care to keep track of at this point) are night and day... not even in the same ballpark what so ever. I hope you all find the help youre looking for!

[Don]

Heys guys.... first... not my product. Second.... the results from hearing aids and the result from the Esteem Hearing Implant (Ive talked to more patients than i care to keep track of at this point) are night and day... not even in the same ballpark what so ever. I hope you all find the help youre looking for!

How would you have the opportunity to talk to "more patients than i care to keep track of" if you are not involved with the product?

[LucyD]

Thanks to everyone for your words of encourgement!! I finally came to terms with my hearing loss and finally purchased my first hearing aids about a month ago. Everyone is right, it does make a world of a difference. I am able to hear things more clearly. I feel more confident at work especially during staff meetings where I can follow what is being said. My husband and children see a difference in me as well. They do not have to constantly repeat themselves when they talk to me. I am able to hear things that I haven't been able to hear in a while like the timer on my oven and best of all my cat's meow now sounds like a roar!!

Thanks again everyone!:)



250..500...1000...2000...4000....6000...8000
L. 5... 5.......20.....55......85........90.....90
R. 55...55.....50.....75......85........90.....90

[seb]

Lucy,
I'm glad everything is working out!