Short version I’m in a position that my ENT wants to put in a cochlear implant in my right ear when they go in to do some other work. I have had no hearing in my right ear in 20 years and have tinnitus in both for the last 25 years. Looking for someone else that has had hearing loss and received the implant. How long have you had it? Is it worth all the hassle and expenses? Does the garbling sounds ever disappear? How comfortable are they? How differently do people look at you for wearing it?
I don’t have it but was borderline as a kid.
But this:
How differently do people look at you for wearing it?
Be aware that these are a huuuuuuge argument within the deaf community, due to how they were segregated until very recently.
You’re going to get a lot of people vehemently opposed to it, because they see it as erasing “deaf culture”.
So most people aren’t going to give a shit or even notice.
But there is a very real chance a person who is fully deaf starts angrily signing at you. And may flip out if you don’t sign back. And assuming you’ve always had partial hearing, you might know be able to sign.
Definitely don’t let that hold you back from getting it. Just saying that’s the only time someone may judge you for getting it.
If it does and you need to defuse, showing them it’s only in one ear might get them to understand.
Maybe not, like I said, it’s a pretty big deal in that community.
https://cronkitenews.azpbs.org/2024/05/08/cochlear-implants-cultural-implications-deaf-community/
https://deafaction.org/ceo-blog/the-stigma-around-cochlear-implants/
https://deafwebsites.com/cochlear-implants-and-deaf-culture-ethical-perspectives/
It sounds insane, and not as popular as the age group from segregated deaf schools die off…
But within the deaf community is a large subset who believes people born deaf need to stay deaf, and they act very similar to religious extremists.
The more you know! That was extremely enlightening so thank you for taking the time to respond and post the links.
Unfortunately I have no interaction with the deaf community and don’t know anyone who signs. I had great hearing until the age of 15. Since then I’ve worked in technology so communication is usually with not as hard with quiet rooms and headphones. I’ve been informed by my medical team and read so much on what it can do. Looking for someone that has lived their life with a device that can give me a more day to day experience. Doctor’s can’t tell you how it feels going through a security check point and everyone eyeing you or what it is like processing end of the day taking the device off.
and everyone eyeing you
What helps a lot of people is going “people watching” themselves.
Go somewhere public with a lot of people, and pay attention. Not just to the people, but how others interact with strangers.
You’re going to see people with quirks, doing weird shit. But more importantly you’re going to see that unless they’re screaming and throwing shit, most people never notice anything. Even a super crazy interaction, five seconds later it’s out of their head.
There is a very small slice of an already small demographic that may care about a cochlear.
The vast majority of people will never notice, if they do. They’ll immediately forget.
The more self conscious you are, the more noticable it will be. But that goes away as you get used to it.
It’s like that skit from WKUK:
https://www.youtube.com/watch?v=-pFD8ic4Lu4
Nobody really cares
Love me some WKUK! People watching is one of my favorite activities when I go out. With the hearing and all usually live in my own head while out in crowds. You can absolutely learn a lot about people by just watching their actions.
To add to this. I’ve only noticed one person who had cochlear implants, and only really noticed because she also had a speech impediment (then I noticed the “hearing aids” that didn’t look like most hearing aids). Her hair partially covered them and I wouldn’t have noticed at all if I hadn’t been interacting with her.
I do notice more hearing aids and such these days, possibly because I’m getting older and am aware of what my near future holds. I don’t think most people will care too much.
My grandmother got cochlear implants for both ears after she became unable to hear. She loved that she was able to talk to people again. She said that listening to music wasn’t as good as she remembered, but it was better than what she had. I don’t think the garbling sound ever disappeared.
Do what feels right. If you don’t get it now, you can always get it later.
I am not deaf and fortunately nobody from my family is.
But I have a friend who is a electronic technician and he activates those implants, make some checks up after a month and make sure the fine running is adapted to your needs.
He is under paid, needs to travel a lot, working on Sundays when needed and some times his working hours are long and exhausting.
He still says he has the fucking best job of the world and he is not thinking in switching in a million years.
I guess they work good and they are quite rewarding if just the technicians are this devote to the job
Your buddy sounds like an unsung hero! The difference between medical person treating you as a patient and caring for you is huge. Learning the technology and procedures that make all this work, truly a marvel of medical and engineering.
Tell him thank you for the work he does.
A good friend has one, also only for one ear. People don’t really notice, I’d say. I don’t think it really restored a lot of hearing but he still wears it usually as it is still better than nothing. He got it pretty quickly after his hearing loss, so no idea how that would be after 20 years. He got them for free through standard health care as far as I know. I don’t think he’d be willing to pay a lot for it if he had to. But I never asked that directly. Not aure if that helps. If you want I can try to ask him some specific questions if I remember to do so.
Thank you for the response. Living is US so healthcare is always expensive. That is a big concern is being on a limited budget now having been told for at least the first year there are therapy and learning sessions involved. That means for my decision it needs to be worth the money, time, and energy. So far I’m leaning to no and just living with what hearing I do have left.
Not the same, but maybe similar. I got used to how bad my eyesight got. But recently got glasses. I’m so used to it that i regularly forget them for a few hours and am fine. But dang I didn’t remember how good it felt to see the word in 4k. It’s incredible.
Glad to hear life is more clear for you. As you lose sense at a slow rate you easily forget what you have. Double good for people to remember these experiences as it helps dealing with other people that have similar issues.
A friend of mine has got one. He was 55 then, and he had normal hearing before until 50 or so. It was a near failure, probably because of his age. It took him huge effort, several years to learn hearing with the implant, because the sound is so different. He is far from satisfied even now.
I have read then that they are much more successful with kids, where the brain adapts so much easier.
How long have you had it?
1 year
Is it worth all the hassle and expenses?
Yes. It made communication easier.
However, i live in france where all those expense are covered by our “social security”. I wish USA stop thinking about cost/debt and try our medical system. It will be better for everyone.
I can listen to podcast without transcript and hear without reading lips for the first time in my life. It is still difficult but i’m improving steadily. :)
Does the garbling sounds ever disappear?
Dunno. I read that cochlear implant can reduce Tinnitus.
How comfortable are they?
Very comfortable. Clean up is easy, i wear them every day. The very first time, i couldn’t bear high pitched sound because i never heard them. My hearing world was limited to hearing aids capability and hearing aids don’t support high pitched sound. Slowly, as i grow accoustumed to the news sounds, they increased cochlear implant ability.
when the cochlear implant is activated, it will start at the lowest power. And every month they will increase until you reach 30db. It is a gradual process.
How differently do people look at you for wearing it?
I’m different. Deaf community reject people wearing cochlear implant. Often my deafness is invisible and i had to explain that i’m deaf.
So i decided to wear a beautiful white cochlear implant to show them that i’m deaf and i love hearing aid, cochlear implant and i don’t care about their opinion. 😁
I’m not deaf but I doubt people care nowadays.
@Snoopy@piefed.social this might interest you.
Oh thank you @pseudo@jlai.lu :3
De rien (^_^)
I’m trying to understand that smiley ^^
Same old one I keep using. Have you changed interface?
I see this one :
(\_\)
I’m checking on jlai.luOn croirait que je pleure dans le vent.
Yes but that gave mea new emoji, quite fun :)
@zhayl@lemmy.world
Depending on our hearing background, our hearing experience will be different. You will find more accurate answer from people who share a similar profil to you.
As for myself. I’m profoundly deaf since my birth. I weared hearing aid since my 3 years old and decided to get an cochlear implant in my thirty years old.
I prefer starting by debunking misconception about the cochlear implant. :)
how the operation will go ?
It will be quick, the operation last 2h. You will fell nothing when you wake up. Over hours your ear will hurt lightly, it will last 1-2 weeks. You will have some vertigo for 1-2 weeks too.And one month later, they will activate the cochlear implant at its lowest power. They will increase ets power gradually.
Don’t play with rugby and Electromagnetism
The cochlear implant doesn’t like shocks : boxe, rugby…and anything that can interact with its magnet under your head’s skin : airport scanner, irm scanner…
You will stay deaf
Yes, you will hear better and it is better than hearing aids. You will hear more details. Hearing aids cannot produce high-pitched sound, only cochlear implant can achieve that.
It will improve your communication. But lot hearing people do the mistake thinking you can hear as everyone do. No, you are deaf. And wearing the cochlear implant will exhaust you, you won’t notice it.
So, use every possible meant of communication that can help you daily. It will lower your fatigue :
- text communication instead of phone
- speech to text (ava, lokas (framasoft, foss app))
- collaborative pad (etherpad, cryptpad)
- rogervoice
- writing
- alert light…
The cochlear implant doesn’t work immediately, there is 1-2 year of auditory rehabilitation
You won’t be able to hear sound speech the first time your cochlear implant is activated. There is 1 to 2 years of auditory rehabilitation.
It depends of people but usually, the first time, people will hear nothing or some cryptic sound. Let’s imagine you don’t know chinese. If you go in China, the first time their chinese will be mixed, you can’t distinguish a word. And over time, you will be able to notice the same word “niiao”, then later you will see the word “Nihao”.
There is 1 to 2 years of auditory rehabilitation. You will have to wait 1 month to distinguish the speaking sound. And around the 3-6 months you will start hearing words, or sentence. It depends of people. Maybe it will be faster, slower…your brain will do everything, its amazing.
You will never hear as hearing people do, tfe sound is different
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The sound will be different, it sounds metalic. However, you can hear birds, small noises, high pitched sound. Your communication will be easier. Maybe the picture won’t have the accurate color, the same blue than most people, but no pixels will be missing and the color will be still blue.
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In loud environnement, it will be hard to discuss with people. The cochlear implant can’t filter sound as an ear does but there are option to reduce ambient noise and improve communication in loud environnement.
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Hearing with a cochlear implant or hearing aid will exhaust you. Not a lot but when you will remove it, you may enjoy those silent moments. You will be not aware of your fatigue.
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Had head cancer at 15. These are the effects of the radiation. The whole head region tons of problems. Mentally no. Had a huge mental breakdown 5 years ago. The whole self-deleting isn’t a matter if, but when for me to let you know how bad things are. I’m not a quitter though so I’ll be around at least till my mother passes.
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I have plenty to be thankful for. Regardless how bad my issues seem I’ve seen far worse outcomes. I am just at the point where I have lost the energy and motivation to keep trying to improve my station. Short life has worn me down so much just roll with the punches and hope for the best. Don’t compare your life to someone else though. Everyone experiences life to different degrees. Our struggles compared to previous generations is nothing.
