CI questions

Cochlear Implants
#1

It looks like I lost my residual hearing this week after being profoundly deaf in my left ear since 2005. My right ear has been dead since birth and the left ear has gradually decreased in sound from the mid 90’s until in '05 it just dropped to profound deaf in one day. Doctors never found out why, they all just said “you’re deaf”.

A powerful BTE gave me back residual sounds, but not speech comprehension, but I made do with that because the residual sounds alone kept my brain stimulated. I’ve always been a loner so the loss of social interaction was never really a big deal for me. I was social distancing for years before it became a thing lol.

When I absolutely had to communicate with people, lip reading, writing and focusing hard on listening got me through. But now i’m suddenly in total and complete silence and it’s not fun. I don’t think I can get used to not hearing a knock at the door, the clinking of dishes or the garble of the TV set with my BTE gave me. All these residual sounds kept me from feeling isolated, but total silence makes me feel so disconnected to everything.

So my questions on CI to those who have it…

  1. Does anyone have CI without still using hearing aids? I see many here still make use of a HA in one ear and CI in another. Since hearing aids are now out of reach for me, i’m curious to hear from people who just have CI in one or both ears and how they are working?

  2. Can you really hear better than you did with hearing aids? For the last 15 years, my left ear has been stimulated daily with residual sounds so I do realize that getting a CI as quickly as possible would probably be most beneficial to me.
    I read stories how sounds and people sound like cartoons and chipmunks…is that only in the beginning and sounds then gradually begin to sound less like that over time? Or is that permanent and something you have to get used to?

  3. Music isn’t an issue with me. It’s been SO long since i’ve heard music that i’m ok with never hearing it again. It’s just something i’ve accepted when I first went deaf. But what about TV? I enjoy watching TV daily (mainly favorite classic shows on DVD) and this past week without hearing anything from the TV set anymore is depressing.
    Does TV sound good with the CI? I mean, can you decipher what’s being said on the TV or does it sound like garble? With my BTE it sounded like garble, but I still enjoyed just hearing the sounds and following the closed captions. But to be able to actually decipher what’s being said is incredible.

  4. Outside sounds…can you hear things like birds? Cars going by? Your footsteps on the ground walking? And do they sound like you remembered when you had “normal” hearing?

  5. This may sound silly, but where exactly DO the sounds go?! Into your ear like a hearing aid? Or do the sounds go directly into your head? I’m trying to imagine how people hear with the CI and not using their ears…I know the processor is on the head…is that where the sound goes into?

Sorry for all the questions. This is the first time i’m seriously considering the CI and it’s scary. Also, i’ve not been working since I tried a “trial work period” that you’re allowed with Social Security. That was 8 years ago and it failed miserably because of my deafness so I just considered myself retired and went back on Social Security. I’m 51 by the way.

I know if I get the CI, they will end my Social Security after 12 months of activation so that is also scary since I would have no financial net anymore, but if the CI makes me hear enough to work successfully, that does make me a little excited to be able to do that again. (i’ve worked in supermarkets stocking shelves for 20 years, which I loved, so it would be incredible if hearing gave me the opportunity to do that again. But at my age, it would also be harder than when I was 30 lol.)

It seems suddenly I have all these major decisions to make and just a week ago the biggest decision was what to make for dinner tonight. Anyway, I appreciate any and all information anyone can share on the CI for me. I’m really terrified and feeling just so disconnected from everything with this total silence. :frowning:

I think I feel deep inside that it’s the right decision to make, but it’s so scary at the same time. I have a Tuesday appointment with an audiologist for a hearing test to figure out the damage and I have no doubt that i’ll now be off the chart and past the 110db which is the highest loss on the grid. I will ask him about the CI then, but I really wanted to get feedback from you experts here who actually have them rather than from a hearing doctor.

Again, sorry this is so long.

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#2

@cfr70: I’m not deaf. I’m no technical guru. I’m not a qualified counsellor. I don’t know enough about CI to be of any help because of the facts I know.

But I have known fear - both of what is known, as well as of the unknown - and what it’s like to have to face it alone. So, I’m posting in reply to tour OP just to say that you’ve made a great, wonderful step in deciding to discuss it.

From a hearing standpoint, you may not have anything to lose by going the CI route, but - as you’ve already said - there can be other potential adverse consequences.

There are very knowledgeable members of this Forum that I’m sure will step up to answer your questions. I’m just piping up as a one man cheering section to say “Good for you! Keep up the good work”. That’s the only thing that I have to offer you, but maybe that’s enough, just for today.

Good, good luck to you!

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#3

Welcome to the forum @cfr70. I’ll try to answer some of your questions for you.

I have a CI and Hearing aid. And no you don’t have to wear an aid if you don’t want to. I wear one simply because I still have some usable hearing in that ear.

Yes I can hear a lot better with my CI. My WRS went from 33% pre op to 94% 12 months post op.

Yes TV sounds good to me. And yes I can understand every word the say.

Yes I can now hear the birds and the bees outside. I can hear the microwave go beep. The clock on the wall ticking. And every other environmental sound you can find.

The sounds good into the processor, then get transmitted to the internal part of the CI then off to your brain where the sound get interpreted.

Yes to start the sounds you hear are very cartoon sounding. It does take some time but these sounds do normalize slowly.

I have absolutely no regrets at all. I just wish I had done it a lot sooner. I encourage you to go and have an assessment for a CI. The sooner the better while you still have some hearing available.

Good luck with the decision making and your new life of hearing.

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#4

I have a CI in what was my only hearing ear, with the other having been shut down for four decades. It’s only been five and a half months in, and things have been working spectacularly well.

I definitely do hear much better than I did with an aid - now having access to a much wider range of sound than I had previously. In the beginning things sound a bit squeaky, but this normalises over time and goes away. I find everyone sounds pretty much like they always have. It’s different overall, but also familiar/same from the character of their voices/sounds, if that makes sense?

Music is always an adventure, it sounds great for the most part. The thing that does get me is being able to discern lyrics without knowing them beforehand. For what was usually a homogenous mass of music and singing, there’s a clarity I didn’t have before, and it blows my mind every time.
TV is fine, radio, and phone too. Can do without subtitles/closed captions.

It’s different but for the most part they all sound quite similar to what they used to - if I could hear them previously. Though, some things are a little different - cars, rain on the roof are two things that come to mind. I get quite a kick out of hearing high-pitched beeps, such as from the washing machine buttons, as they’re kind of new and sound great too.

A perception of sound is simulated via the electrode array in the cochlear after it’s been processed into electrical signals from the internal implant with input from the external sound processor which the sounds go into. No audio generated at all.

It is all quite a big step to take in getting a CI implanted and can be quite scary. It took me two goes before I had the surgery - there was a concern that it could have been quite a big risk to my balance if the hearing ear was the only one that had any function in that regard. The thought of dealing with balance-related issues and its impact on my independence was a bit of a showstopper. Had some testing done and turned out I did have inner ear balance function in both ears, so as a result I was pretty much good to go!

Keep in mind this is just the outcome for me, and would be different for you. But doing a proper CI candidacy evaluation will give you better idea of how it’ll be for you. Hope it all goes well at your appointment!

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#5

I have 2 CI implants.

Anyone that gets to the point of needing CI and passes the the CI evaluation will normally be fascinated with CI. You will hear like Superman. That means all the sounds of nature and things in the house, etc……

With CI sound is crystal clear. You will hear very clear sounds that you have not heard in a long time. I hear words in music I didn’t hear when I was young but the music is not very good yet. Music is getting better with practice.

You will be amazed at the sounds of nature. My wife is a bird person that can identify birds by sound. I am actually doing that now. At night the crickets and frogs can be very loud!

CI is all electric. Sound is converted into digital electricity. The digital electricity is sent to the cochlea which is attached to the cochlea nerve stem and then direct to the brain. Basically it goes around all the outer and middle ear functions.

As mentioned, getting the CI evaluation is your first step. There you will get many questions answered and probably get many more new questions. There are a few CI members here on the forum who can also answer questions if asked.

CI is not as scary as it appears.

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#6

So, I am now a bilateral CI user, here is the link to my thread where I talk about how that happened and what I experienced.

As to your questions:

  1. I hear astoundingly better then i did with hearing aids. There will be a transition period but eventually things sound normal. Does it sound exactly like it did when I could hear, no, do I care, also no.

  2. I understand TV better then my wife who has a barely detectable mild hearing loss. Accents can be a problem sometimes but I sometimes wonder why I bothered to get the TV streamer. Now you have been without speech for long enough that it will probably take a good deal of rehabilitation for you to understand it well. But with work you should be able to get there.

  3. Yes you should hear all of that, I had forgotten that fresh snow crunches when you walk on it. You may need some help in identifying things at first, partly because there is some difference in sound but mostly because you will hear things you have not heard in along time. Crickets can make an awful racket. Your brain will adjust to the differences, if you think about it you will know they sound different but most of the time you won’t notice.

  4. Because the electrode feeds into the cochlea and stimulates the audio nerve your brain perceives just as if it came through your ear like regular sound. Sometimes when I am stream things and thinking about it it does seem a little like the voice in my head, but I think that is more psychological the physiological.

As to social security, I never needed it but I did do some reading and my understanding is that you are automatically considered disabled for the 12 months after implantation but then your evaluated at that point to see how you are doing and whether you can work. Depending on which State you are in there are probably also services to help you with work rehabilitation and job placement.

I can’t imagine what you are going through even with both CIs off I have some residual hearing, not enough for speech but at least some sounds. Not every audi deals with CI so you may not get all the answers Tuesday, and as a couple of members have found sometimes you have to work to find one that is willing, although your candidacy should be a no brainer and I am rather surprised it hadn’t been suggested before this.

There are plenty of us here who have been through this and no question is too silly when considering something like this so keep asking away and we will try to answer whatever we can.

Good luck.

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#7

This is a great point. Hearing sounds you don’t recognize.

Since you have not heard many sounds in a long time you will be asking someone or looking around wondering what that sound was. For me it was a bunch of new sounds. I asked my wife many times “what was that sound or that sound” .
It takes time to learn them but it will happen. All the new sounds can be overwhelming too, especially the first few months.

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#8

I woke up feeling depressed and then saw all your replies and feel SO much better. Yes, this is really scary but knowing people have gone through this already and are now happy gives me a lot of hope. I read somewhere that some of the best things that happen in your life can come out of our most darkest times…so maybe this is one of them.

Since going deaf my left ear has been used to residual sounds by using the hearing aid. I could hear my own voice pretty good when I spoke even though other people sounded like garble. So it’s really frightening not to even hear my own voice anymore.

I have a Sun Conure bird that screeches at 100db, they are the loudest birds to have and even without my aid in, I could always hear him, but since this week, I don’t hear him anymore and that’s really scary. I see him screeching and hear nothing.

Back in 2006 I was approved for a CI but backed out of it for fear of losing my residual hearing. Well, since that’s now gone, I have absolutely nothing to lose at this point. The thought of not even hearing my voice when I speak is just too much to bear. Little things like that have always got me through being deaf, but this is really too much. To have complete and total silence is too frightening.

But all your posts this morning have really helped me so much. The thought of hearing crickets sounds impossible lol. Even with my hearing aid I couldn’t hear stuff like that…or the birds outside. (only my loud Sun Conure), so that would be something to look forward to.

Oh I had another question. If you’re ever too overwhelmed with sounds, can you just take it off for quiet? It’s not something that’s constantly on? Like when you go to bed, you shut it off and can sleep in quiet? Hopefully i’ll be able to meet soon with a CI specialist and ask all these questions and maybe the audi on Tues will guide me to one.

The only thing is, this is going to be at least a 10 month wait because first I would have to sign up for Medicare Part B which would cover 80% of it, and the enrollment for that is every July. So I missed that the most recent open enrollment by 2 months.

But I guess that gives me time to do research, meet with specialists and get evaluated which I see from reading here is an extensive thing. When I was approved in 2006, I don’t recall any intense evaluation. I remember having one meeting with a specialist who said I was a perfect candidate and was all set to do it, but I backed out fearing residual hearing loss.

Anyway, thank you all for the helpful explanations and advice. It’s reassuring to see not one of you have said that you regret doing this or have had negative experiences. That does help make this much less scary. But when you have nothing left to lose like I do now, that helps too lol.

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#9

Thank you for the encouraging words. Yes, since there’s nothing left to lose now, there’s hopefully only gain. Keeping my residual hearing was always the reason I stayed away from the CI, but now that the worst has happened, there’s no reason to keep putting it off.

These last few days have been so scary and unsettling, but reading all the posts here have helped immensely to keep my sanity. I keep saying to myself, “It’s not the end of the world, and you will move through this like everything else.”

Besides, what else can you do BUT move through it? :slight_smile:

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#10

You mean you can hear and understand 94% of the words someone is speaking to you?! Is that while reading lips or not even looking at them? When I go for my hearing tests, the audi always covers their mouths lol so I can’t lip read. So is that 94% understanding solely by hearing? If so, that completely floors me!! It’s been a good 20 years since I could do that—in fact I can’t even imagine it.

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#11

Your situation seems same as mine. My right ear has been dead since birth so i’ve always had just one ear to use. It makes me feel hopeful to see you say “spectacularly well” after just five and a half months. I always thought it was a long process adapting to the CI, but to see some have excellent results so quickly astounds me.

I really don’t miss music all that much. I grew up on 70’s 80’s and 90’s music and have them all in my head that I can “play” them whenever I think of a song and then it’s in my head all day and hard to get out lol. It would be interesting to hear those songs for real again though.

TV is what I really enjoy. I have it on constantly throughout the day just to have background noise in the house. I don’t sit down to watch it until the evening, but just hearing the noise of it all day was reassuring. And to be able to watch without captions is unbelievable to me. I just can’t imagine that to be possible!!

I always enjoy the washing machine beeps and microwave beeps—this week they’re gone and it’s really jarring. If the CI could bring that back I would be ecstatic. Isn’t it funny how the most mundane and inane little sounds can mean so much once they’re gone?

I read about balance issues and hope that won’t be a possibility with me. I never get dizzy so maybe my inner ears function is good too. But to be honest, i’d accept some balance issues to be able to hear again. That’s how badly I miss sounds.

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#12

Wow, right now that is so difficult to process. I just tap both my ears and hear nothing and it seems like this is forever. To just know that I can still possibly “hear like Superman” with a CI blows my mind.

You can hear frogs too?! Wow. I live on a pond with ducks, egrets, herons, black crows, storks, etc. They even come right up to my patio for food and even with the hearing aid I couldn’t hear them.
I’d see the crows open their beaks and caw and wished I could hear them—I wonder what they all would sound like with the CI. Sometimes they’re all out there together and it’s probably a bunch of different sounds.

It’s hard to wrap my brain around. I guess the only way to really understand it is to have it. I try to imagine it but it’s too difficult. I know the processor is up on the side of the head and goes down to the ear. It’s all so fascinating, but I don’t understand how on earth they do it. Hopefully i’ll find out by wearing one. Anything is better than where I am right now.

#13

That’s what I always worried about…things sounding abnormal. But it’s reassuring to see that it fades after the transition period. I don’t expect things to sound like it did when I was in my 20’s, but just to be able to understand and comprehend words again is more than enough. I really wouldn’t care if everyone sounded like chipmunks lol.

I’ve been watching TV for 16 years now with my BTE and it’s always garble gibberish sounding but the sounds and tones from the voices were always comforting. To actually be able to comprehend what they’re saying again is mind blowing. I remember what words sounded like and still speak normally so hopefully rehabilitation to understand words would be short for me. For the past 16 years, i’ve heard my own voice through the BTE really good, so even though they were my own, i’ve been hearing words still right up until this week.

Yes, after 12 months with the CI the benefits would stop. But if I could hear and understand people (someone here said 94% understanding!!) I could easily be able to work again anyway so probably wouldn’t miss the SS anymore.

I have very low bills and a $500/month mortgage payment, so even if I had to take a minimum wage job, i’d be able to survive just fine. My SS is only $1505/month and i’m sure working would earn more than that, and yes, FL has work rehabilation and job placement services so I would have help there too.

If the audi on Tuesday doesn’t have a CI recommendation, I guess I can just contact the CI companies myself and let them lead me to where I need to go? It can’t happen until I can get my Medicare Part B to pay for it and that won’t be until next July, so I have lots of time to find help and choose with company to go with.

#14

A couple of things, the CIs are held on by a magnet, so yes you can take them off if it is to much or when you sleep. If you use a smart phone they also all have apps that will give you a lot of control over them, or a basic remote if you don’t have a smart phone.

All of the manufactures have web sites where you can find contact information for audis as well as their region representatives to help with the process.

I also recommend Cochlear Implant HELP as a site to get more information. They have a good overview of the process and a comparison of the different brands. It is an excellent place for starting information. It is run by volunteers who have received CIs to provide information for new candidates.

And of course there is a wealth of info here if you go into the Cochlear section of the board a number of us have posted parts of our stories.

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#15

You might want to do more reading about Medicare.
Timing is important.

Your first chance to sign up (Initial Enrollment Period)

Generally, when you turn 65. This is called your Initial Enrollment Period. It lasts for 7 months, starting 3 months before you turn 65, and ending 3 months after the month you turn 65.

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#16

This may be an odd question, but does the magnet (or the whole CI for that matter) cause problems while outside in the heat or sun? I live in Florida and can never wear my hearing aid while outside because the heat and humidity causes sweat that interferes with the aid. So i’d always have to go outside in silence and put the aid back on when i’m home or inside.

Thanks for that website link. It looks like there’s a wealth of information there. I just quickly read one CI story there titled “Ken’s Story” and it amazes me that these things can do so much for people and so quickly. I can’t wait to read other people’s stories now.

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#17

I get outside and sweat a lot.
I have Cochlear Nucleus 7 and also Kanso 2 processors. I have found the off the ear Kanso 2 processors are not affected by sweat but the Nucleus 7 on the ear processors are affected by sweat.

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#18

When you are under 65 and disabled with Social Security benefits (SSDI), you’re automatically entitled to Medicare Part B 24 months after your disability benefits begin. That was in 2008 for me, but back then I opted out of it because I was only 38 and didn’t think I needed medical insurance…which was a stupid decision looking back. The cost was only $135 then out of my monthly check. I was only getting $1100/month and couldn’t afford that…but looking back, I should’ve done it.

It’s now $148 I believe for Part B, but they tack on a 10% penalty for each year that I didn’t opt to have it. So that would add on $14 X the 14 years penalty (2008-2022) = $196 penalty added to the regular $148 yanked out of my check.

So Part B would cost would be about $344/month out of my Social Security now, and they only have open enrollment once a year which is every July. So i’d have to wait until July 2022 to start it and they’ll start taking $344 out of my $1505. (or $1600 with the estimated 6% COLA increase for 2022). So i’d have to live on $1256/month to get the CI next year which isn’t too bad as my bills are pretty low.

That age 65 example you gave above is when Medicare starts for everyone regardless of disability. That does include me also as the penalty clock would then reset and i’d be able to apply for the Part B without having to pay that 10% penalty when I reach age 65.

That was my original plan actually. To wait until I was 65 and THEN consider the CI because I wouldn’t have to pay the penalty. But losing my residual hearing threw a big wrench in that plan because I don’t think I can make it 14 years in total silence!! That’s just too long…next July is much more doable lol.

#19

When do you turn 65?
I ask because your thinking about open enrollment doesn’t sound right. I think it’s all about the month you turn 65.
I think.

#20

What do you mean by Cochlear Nucleus 7 and Kanso 2 processors? You mean you have 2 different CI’s on? I definitely wouldn’t want the ones that can be affected by sweat because I walk a lot and it’s humid year round here in FL.

I will make note of the Kanso 2 processor to be the one to keep in mind.