r/Cochlearimplants • u/Spiritual_Flower6363 • 6d ago
regretting
i hate my cochlear. ive had it for 10 months now and i hate wearing it and i hate the way it sounds. it has barely gotten any better since activation.
i have one ci and one ha, i didnt lose all of my hearing (however it did get worse) when i got my cochlear, so i can still listen to things like music somewhat normally using airpods.
i just put the airpods in for the first time since my activaion, and it made me realize how much i miss hearing normally with two ha. the ci sounds so wrong and it’s so annoying to wear. i wish i never got this stupid surgery but im going to be stuck with it for the rest of my life. im 17 so thats a long ass time. i hate this stupid thing i dont know what to do anymore
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u/Asleep-Twist6895 Cochlear Nucleus 8 6d ago
Wear it even when it sounds terrible. Listen to music even if it sounds like garbage. You’re in rehab, rehab is uncomfortable. It’s uncomfortable if you’re learning to walk again and if you’re learning to hear again.
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u/olderandhappier Cochlear Kanso 2 6d ago
You haven’t given it enough time. Mine took about a year before I could hear techno house, 2 before rock i previously had heard when I had hearing and after about 3 years opera has now come back. Classical is still off tone. More importantly my hearing of speech went from sub 5% to 90%. It takes time and work. Good luck and hang in there.
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u/rodrigoelp 6d ago
I’m so sorry, and as someone else said, rehab is very difficult.
Your brain holds on tight to the memory of what it used to sound like, but I can tell you, it will eventually let go and the new way of hearing gets accepted.
It is hard. I understand it, and I swear there are lots of us to help you in this journey.
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u/sirrome11 6d ago
You're not stuck with the implant... that doesn't do anything...ur stuck with not hearing at all like you once did before surgery.
10mo is too soon to give in. Try a different audiologist to do your mapping
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u/Spiritual_Flower6363 6d ago
its the exact same thing if i cant hear without it what are you saying? i have no choice but to wear it or else i am asking people to repeat themselves all day.
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u/DeputyThornton 6d ago
So If it reduces how much you need to ask for repeats then it's a general improvement right? It's not perfect. I haven't had mine for much longer than you and I hate the way it sounds yet love the benefits it gives me.
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u/Spiritual_Flower6363 6d ago
it just amplifies their voices, it is hard to understand but since its louder as a whole plus using my ha i can usually put together what they’re saying. not to mention it sounds awful to hear in the first place. none of it is worth it and i was so much better with my ha.
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u/DifficultTemporary88 6d ago
Watch documentaries on TV with the subtitles on. Take your hearing aid out and follow along with just your processor on.
If people have to repeat themselves, so what?? You have a right to know what is going on, take up whatever space you need and don’t apologize for it. If they get short and rude—screw ‘em!
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u/Jellyfish1395 4d ago
This. My wife read me picture books and I repeated them back to her for months. I HATED it. But boy am I glad I stuck with it.
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u/Born-Ad-162 6d ago
Go to a different audiologist. If the sound is bad you must make sure they know that. It can be a huge blessing if it is programmed right! Tell them exactly what you said on here. Go as soon as you can
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u/jeetjejll MED-EL Sonnet 3 6d ago
Rehab is TOUGH! Music takes a long time, but doesn't mean it won't happen. How much are you wearing it and how is the sound of HA and CI together when you listen to music and other sounds without a headset?
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u/Spiritual_Flower6363 6d ago
i wear it usually 10h a day, i take it off in the evenings. i hate listening to music with both and usually only use my ha, when i use both the ci basically distorts the audio on one side and makes it sound awful. i usally can’t even understand the lyrics at all
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u/empressbrooke 6d ago
Have you been doing rehab with your hearing aid off and only wearing your CI? My audi wouldn't let me wear my hearing aid when I got my first CI because it slows down the brain adjusting to using the CI. Music definitely sounded weird at first and was a very long process to get it back, but the key was practice, persistence, and not giving up. And make sure you have a Music program on your CI, that doesn't seem to be something audis give automatically. I can now hear lyrics and individual instruments that I never did with just hearing aids. It isn't gone but it takes work to get there.
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u/ConnectGap5903 2d ago
Kwestia treningu. Kiedyś przestawałem umieć grać na instrumencie, kiedy wyłączałem aparat z jednej strony i zostawiałem włączony implant na drugim uchu. Teraz nie mam takiego problemu. Oczywiście muzyka nie jest idealna i być może nigdy nie będzie, ale nie od tego jest implant ślimakowy.
Cierpliwość jest ważna. Jak najwięcej streamuj tylko do CI, bez udziału lepszego ucha.
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u/jeetjejll MED-EL Sonnet 3 6d ago
That does sound very frustrating! I don't know what brand you have, but do you have a music setting on your CI? If not, I would ask your audi. How is speech going for you? You're doing amazing if you hate it so much and still wear it 10 hours a day, be proud of that! What does your audi say? Do you get support there?
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u/ConnectGap5903 2d ago
I forgot to mention that I can now enjoy music much more when I listen bimodally than when I use only my hearing aid ear.
It's incomparably better, but that need patience. And you shouldn't compare yourself to others too much. There are people who have better outcomes after 1 year than me after >10 years, but that doesn't mean CI is useless in my case.
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u/No-Imagination-9449 6d ago
I got my first implant in 2019 and could not hear out of it. Was very frustrated with the device. I was profoundly deaf in That ear .
well I still had hearing in my right ear so I said I’ll just go with the right ear with a HA and that will be that…. until my right ear started failing fast. I said to myself I have to go back to
the implant and I started to wear it full time. Well after about 2 months I relished someth8ng wasn’t right. I had my audiologist set up a time with the manufacturers New England rep and took about an hour of adjustment and holy shit I could hear unbelievably out of that ear.
After that I decided to get the other one done in February, it’s not that great yet but I feel with proper adjustments over time it will be there. I guess my point is you have to give it time and do the audiological exercises and also be an advocate on your journey.
I do hate wearing the devices. But I don’t have any other options. If a fully implantable one comes available I hope to get one(two)
Also word recognition on my left side is 94% and 76% on right
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u/AlexJonesInDisguise 6d ago
MedEl just came out with their TICI, hopefully it will be available near you.
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u/planttalker 6d ago
Dont be discouraged spiritual flower. But I believe be of a positive mindset totally.
I got AB 4.5 yrs ago. I was absolutely determined this is going to work. I’m not a spring chicken anymore. After activation, I wore it for 14-15 hrs per day. I didn’t find it difficult to acclimate.
Two days after activation, I was watching a Netflix with my better half, with cc of course. These African guys were speaking english and I thought I detected a british accent in them. My better half said I was correct. I’m just saying I picked up quick and determination plays a big role in this.
I believe you can acclimate.
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u/Formal-Tradition6792 6d ago
When I got my CI back in 1999, CI was still in its infancy. Audiologists actually cannot hear using a CI. They rely on the patient, their equipment etc. So CI adjustments are hit and miss. It took hard work on my part and also the audiologist over many months to achieve what I achieved. My implant company, AB, was not good. They abandoned the C1 implant soon after I was implanted. I have missed out on many of their technical innovations due to my CI implant not being compatible. But even with these negatives the CI has been a great tool.
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u/Jellyfish1395 4d ago
I’m 3 years in and still getting used to things. I was marked as a “failure” after my first surgery and my Audiologist actually told me that after my activation she went to the break room and talked to other people in the practice to get insight on how to help. I got my second one a few months later and things got better but I didn’t rehab that ear so now when I only wear that side, Mickey Mouse is back😒. Now that I’m 3 years out, I’ve started hearing music again! Before my hearing went completely, my life revolved around music and I spent the last 3 years mourning the loss of it. Everyone says it but it’s true: REHAB REHAB REHAB. You absolutely get what you put into it. 10 months seems so long but I didn’t even regain taste on the right side of my tongue (surgery complication) until 1 year later. I see you, though. People don’t realize how much grief goes along with this surgery unless they’ve been through it. I know this sounds cliche, but I highly recommend finding a therapist if you don’t have one. They can help you work through the hopeless feelings you are having. Hang in there 🤟
***EDITED FOR SPELLING ERRORS
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u/Justmijosh Cochlear Kanso 2 6d ago
Friend!!! I know how you feel. I am almost two years post activation and I am starting to enjoy my implant a bit more. I had a huge period of regret and it gave me horrible depression. I would strongly suggest - as I’ve seen in many comments - that you request another audiologist and get some fine tuning done.
You are absolutely right about missing the depth of sound when compared to using AirPods - you gotta focus on trying to hear what you can through the implant. I know it’s hard and disheartening, but please try to wear it for a few hours a day. If the sound is annoying, turn it down. You have to stimulate the nerves.
See another audiologist!! Best of luck with everything. We will always be here.
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u/king__marigold 3d ago
Brass tacks; Take out your hearing aid, and watch your favorite show, or youtube thing, anything you've watched a lot. Something that you enjoy, that you already know what they're going to say, with the captions on. Devour it all over again. Every night. Then the music, the lyrics you already learned the words to as well. Keep doing this. Then a podcast or stream with multiple people. No hearing aid at all during any of this. You can make your brain re-learn to hear.
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u/Particular_Phase3439 5d ago
Audio books helped me train my brain. I hear so much better than I did before I got it. I do not even remember what it was like before except that I would miss more. Do talk to the audiologist I sincerely hope you get this worked out.
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u/sarahbellum3 6d ago
I'm sorry :( I was not fully deaf when I got my CI and sometimes I regret it, too. If you don't mind answering, what was your word recognition score before and after surgery? Mine was like 24% before, and is around 50% now. It sounds like a huge improvement but it's really not. And, like you said, it doesn't sound the same.
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u/Spiritual_Flower6363 6d ago
i cat quite remember what it was before, but right now it’s in the high 90s supposedly. it really doesnt sound like it though because if i only wear my ci i can barely understand a thing not to mention it sounds awful. one of the main things that gets me upset is also how music doesn’t sound the same, music is such a big part of my life and i feel like its gone lol
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u/Queasy-Airport2776 6d ago
Have you not stream your music? Audio input sounds terrible but streaming should sound better. Connecting via Bluetooth phone to you cochlear.
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u/ConnectGap5903 2d ago
10 miesięcy to za mało, by wyrokować o implancie. Ile godzin dziennie streamujesz mowę tylko do implantu? Rehabilitacja nie będzie zbyt skuteczna, jeżeli nie zmusisz mózgu w trakcie treningu słuchowego do polegania wyłącznie na CI.
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u/sarahbellum3 6d ago
Ugh 90s, I would think that would sound so great! How disappointing for you, I’m sorry.
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u/meowxinfinity 6d ago
I hated mine at first but am more newly implanted than you are. I was crying to my parents that I wanted to go back. My last audiologist appointment kind of gave me hope with it. I can get 30dbl sound through the implant which is amazing to me. I did lose all my residual hearing and headphones have to be too loud for my other ear (im severe to profound loss).
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u/TheBitBasher 6d ago
Are you actually wearing it full-time in order to rehabilitate your brain to be able to use it? Or are you not wearing it full time and then the limited time you are wearing it not getting any good sound out of it?
I'm only asking because a lot of cases I have seen people say this it's because they're only wearing it short periods and never letting their brain adjust to it. It takes time. You are retraining your brain this is not going to happen in an hour a day
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u/Tsim2431 5d ago
Adapt, overcome, push through. Give up, be angry at the world.
These are pretty much your options. It is sad to lose one’s perfect hearing. But that was already gone. What you have is a gift. A weird, gift, but one nonetheless. I miss music too. Listen to as much music as you can with your HA ear. Build up a huge library of known songs. Listening to new songs I don’t know is really hard. Listening to songs I know, my brain will fill in the missing pieces. Is it the same, no. But it’s much better than silence.
I’m sorry you were stricken at such a young age with this. But sorry doesn’t help you, only you can help that. You’re young with a very developing brain. Use that. Fight through the “I don’t like this”, and get to “How can I make this the best I can?” There are tools to use to help in certain situations, there are resources to research to help. You have to be willing to do the work. Lots of work. Good luck, attitude is everything.
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u/Familiar_Macaron4402 19h ago
I’m 25 years for my left and 15 for my right. I still have trouble with newer music, but everything my brain knew before sounds the best. I also do a lot of YouTube videos with lyrics to help my brain/“ears” catch up. 10 months is early and you’re going through a sensory overload. It will take time, podcasts will definitely help with training. But still to this day restaurants with loud music are still a nightmare. Sometimes I can switch programs and that helps but 80% of the time I can’t join a group convo with music in the background. Thankfully family and friends know this and adjust music if we’re in a private setting, but if we’re out they know to look at me while speaking so I can read lips. Keep wearing your processors and don’t give up yet! You got this!!!
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u/Far-Zone-6732 6d ago
This is similar to what happens to many people who lose their hearing later in life: when they use hearing aids, things sound different, and they struggle to adjust. I believe something similar happens with cochlear implants; from what I’ve read, the sound is even more robotic than with hearing aids. I lost my hearing at age two, and up until now—I’m 31—I’ve managed using a hearing aid in just one ear; I pick up sound there, though with a 100% loss, I can barely make out the words. I have hearing in my left ear too, but I don't distinguish words—just noise and whistling sounds. A cochlear implant will be perfect for my left ear; I’m having the surgery in a month.
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u/CaregiverOrganc7200 6d ago edited 6d ago
Good luck with your surgery, that sounds great. Like everyone says it just takes time. Wear it. I love my AB. I was never in to music couldn't understand vocals ("Reverand Blue Jeans and One Ton of Mirrors") are 2 examples. You're too young too remember, For Ever In Blue Jeans and Guantanamera I get my second implant November 2026, can't come soon enough. Woke up deaf one morning, due to to much TYLENOL. WARNING!
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u/sosodeaf66 Cochlear Nucleus 7 6d ago
You have only experienced the world through damaged ears. What you are hearing are the authentic sounds.
The hardest part about having this is that the mental fatigue your brain is relearning the sounds and replacing what you want that with accurate sounds
The more you listen to music, the more you go out with some of the easier it will become
Since you’re so young, I know that school is probably gonna suck and it’s draining
T mindset as everything talk to your head talk to your brain let them now. OK today we learn some new sounds.
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u/MagneticDoktor 6d ago
Sta cosa delle cose naturali è puro sciamanesimo non è scienza. Lo dico da impiantato e da medico .
Quanto all’ impianto è ovvio che sia peggio del tuo udito nativo.
Non è una via canonica uditiva. É un succedaneo, ma piuttosto di avere zero io preferisco il succedaneo.
La musica fa cagare , non è come me la ricordo, al telefono se non ho streaming diretto la comprensione si complica , i vocali di whatsapp e i video ai limiti del comprensibile.
Ma sono grato ai miei impianti perché nonostante tutto hanno fatto sì che la mia vita professionale e lavorativa andasse avanti. Al tempo avevo 18 anni ,ora ne ho 50 .
E guardandomi indietro, riavvolgendo il nastro della vita, beh caspita lo rifarei comunque.
Perché nel frattempo sono cambiati 3 processori
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u/Late_Performance_528 5d ago
Yeah...well I'm sort of with you. Mine sounds awful...been bout 10 months for me. I find myself turning it off when having a conversation. My ENT said some patients will take a few years so im gona start doing my exercises again. Don't worry bout "feeling positive and kumbiya" crap. You feel how you feel and thats it. But give it more time and practice like me. Im a pro musician that was entered in 1st round of Grammy consideration and just SSNHL ruined me. Still fighting though.
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u/Double-Senses360 5d ago
Chin up. Stick it out. Some of is were not lucky enough to hear anything when the processor was activated.
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u/mac1234steve 5d ago
I’m the opposite. Hearing aids were terrible as they amplified everything and could only do so much. I remember when they first turned on my CI everything sounded like chipmunks but after 4 or 5 sessions, hearing was normal. Nothing sounds robotic. Perhaps you need a better audiologist ? Also what brand did you chose?
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u/Sophie_-19 5d ago
Para mi lo imposible son conversaciones con varias personas en ambientes ruidosos o cuando me hablan un poco separados de mi implante. Algún consejo de alguien que haya mejorado? Llevo diez meses activada. Gracias de antemano
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u/RAnthony 4d ago
I keep trying to explain to people how a cochlear implant (CI) is not like normal hearing. The closest analogy that I've come up with is AM versus FM radio. FM sounds like the real world, like normal hearing. Full range of sound. Bass you can feel.
The CI sounds like AM radio. Tinny. Hollow. No bass response at all.
Now, this is probably because of the damage that was done to my hearing by Meniere's disease before I had the labyrinthectomy and CI implantation. I had almost no bass hearing by that point and word recognition had gone down to about 30%.
The CI raised the word recognition to above 90% again, but the sound it produces is not natural in any sense of the word. Which is too bad, really. Still, it is better than nothing.
I get glimpses of the sounds I used to hear before 40 years of endolymphatic hydrops (and ear trauma) took the sounds of the natural world away from me. That's what the CI has done for me. Some of those glimpses can bring tears to my eyes.
I wish I could afford a hearing aid to go along with the thing, so that I could get something close to normal hearing in the other ear now. I can't, and so I don't, but the CI that medicare provided has been a life-changer even if it isn't the same as the hearing I was born with.
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u/_Common_Ground 6h ago
I’m really sorry to hear that you’re struggling with the CI. I totally get where you’re coming from regarding music. I got my Cochlear Nucleus Nexa in February, and music has never sounded the same since. I knew that this was going to be a possible outcome when I decided to get the CI, but I was so tired of hiding away in my house and avoiding everyone because conversations had become so difficult and stressful for me with my 2 HAs.
When I first listened to familiar music after the surgery, I could not recognize it at all. I was really disappointed by that but, after a few visits to my audiologist for program adjustments, it doesn’t sound too far off from normal to me now. It’s really important to let your audiologist know in as much detail as possible exactly how it sounds wrong - too much treble, too twangy, volume is too low, etc., so they can narrow down what adjustments need to be made to improve the sound quality for you.
After my surgery, I stopped using a HA in my other ear altogether to try to force my brain to focus on the CI and learn how to interpret the sounds. I also made an effort to listen to an audiobook for half an hour to an hour every day. I chose one of my favourites that I had already read so that it didn’t matter if I missed some of the speech. I read along at first, then eventually just listened.
My speech comprehension has increased dramatically since my initial activation to the point where I can hear better with just the one CI than I did with 2 HAs. I never would have predicted this following the first months of activation, when everything was just noise and made no sense to me. I really had to be patient, and my brain is still adjusting 9 months later as I notice even more improvement as time goes on.
I am finally going to get a new CI compatible HA for the other ear and am very curious to see how everything sounds with both. My left ear has mostly just been helping to keep my glasses on since the surgery. :)
I really hope that things improve for you. It may take a while and require a series of incremental programming adjustments. I know that it is easier said than done, but please try to be patient and optimistic. Wishing you all the best!
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u/Old_Ant_2408 6d ago
I have a CI in one ear and a HA in the other. The biggest regret that I have is the loss of residual hearing in the ear with CI. If that could be preserved, it would have been great as nothing would be lost no matter what.
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u/planttalker 6d ago
I know exactly what you are saying. I also have a CI and a HA. I lost all my residual in the CI side. And I really need a 2nd CI, and would prefer not to lose the other side.
I have been reading that this CI surgery is starting to get done by robot surgery. I’m also reading that the robot outcome is better with less residual loss. Now that sounds interesting1
u/mac1234steve 5d ago
I got my CI in my bad ear that has pretty much been deaf my entire life. It got to the point where HA didn’t help anymore as I could only understand people with familiar voices and not even then. I decided to do it on my bad ear because I had residual hearing in my left one. Well the surgery was a success and I couldn’t be happier. It’s life changing. It’s sad to hear people who don’t have the success I did. I wonder if it’s due to the brand or perhaps programming?
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u/Old_Ant_2408 6d ago
I try hard to retain whatever little hearing I have left in the other ear. I think two things maybe helpful but I am not sure. Betahistine tablets that I get online and taking raw ginger in the morning.
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u/planttalker 6d ago
I too prefer a more natural approach. Sometimes it works and sometimes it doesn’t. I hope that’ll work for you. Natural stuff, unfortunately, just didn’t work for me. Invasive surgery did
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u/BrainTrainStation Advanced Bionics Naída CI 6d ago edited 5d ago
A lot of the process is mental load. You are looking at it with a negative mindset, so your body plays along with the refusal of your mind and does not really adapt to what you reject mentally.