Question about CI...urgent

[HOH-ME]

Sounds for me at first were odd--very mechanical/robotic. I still have a bit of that for some sounds but for the most part, things sound like they should. I do pretty well with music but it's not 100% normal. Songs on the radio that have a lot of electric guitar sounds are bad, but over a good quality stereo, pretty good. I'm only 5 months into this though.

The speech recognition, even if it sounds strange, is SO much better!!

As for getting 2 at once. My surgeon doesn't like to do 2 at once for anyone that has residual hearing...just in case it doesn't work. If you have no usable hearing, she would do 2 at once.

 

[Frisky Feline]

my hub cant hear cats meowing with HA. Then He can hear our 5 cats voices and all of their sound are different with his CI.

 

[SBirn]

My own path

This question is for those with CI who were hearing before.
After receiving the CI and having it activated, did things sound the same or different, like someones voice? Music? I am just curious as I am seriously considering the option to have it done. Ive heard various stories but Id like to know first hand from someone who actually had it done. Thank you.

First, apologies for the length of this. I was a tech writer among other roles. It's what I do.

I can't tell where we all fall in terms of when our implants were done, so there are many factors that cause us all to experience this thing is some similar ways and different. Mine is mentioned with my hearing loss.
1. My doctor first told me (he typed) get 2 implants. Then immediately went to 1 because he did not know how I'd react to hearing the sound produced by the CI. I believe my age and hearing longevity played into his retraction. So, you will need to think about this (pending insurance or whatever you will use).
2. I am 59. I've been hearing with BTEs since @1963/64. My guess is I had a mild to moderate loss but I was born with one but no one knew it. It spiraled down maybe 6 years ago bilaterally - both ears are/were pretty equal.
3. I likely have not heard high frequencies in either ear for many moons. I remember many "cross over" moments in audiograms - couldn't hear the sound at say 90 or 100 dB in one ear, so it literally crossed to my other ear. Bleeding Purist suggested and I concur that is causing me to hear the world not in a robotic sound but like ducks.
4. I believe the resident experts here say (and I would recommend you follow their advice as well as your audiologist's) WEAR THE CI as much as possible.
4a. My partner read that (that was her area of prep for surgery) new synapses (brain pathways) are created to send and receive sound since you are now processing sounds you haven't heard. I loathe the world of ducks but wearing the CI is "likely" the only way to get past it.
5. There are no assurances in any surgery as to what the results will be. Just be prepared for a process not an overnight resulting in, "OMG, I can hear!" Patience (and more than I have).
6. Music: I dorked around with a player while friends were doing other things. I put on diff. CD music I can hum in my head. I listened for similarities to catch on. There were really none. Had a friend come over and mouth the words to, "The River is Wide," as it played to try to connect her words to the CD. I'm not sure that really happened. Maybe the 2nd or 3rd time I played it I processed a couple of syllables but I'm not sure. With orchestral instrumental only, there was absolutely no recognition. That is to be expected certainly for a while. Don't freak.
6a. Having written all that (in 6), you may develop the ability to discern it in time as the pathways are created. But, you may or may not get it.
7. Hearing on the phone is also similar to 6. I don't know that I might not hear on one. That took me aback because in all the reading I did before, no one said it. BUT some people here were able to achieve it.
8. You will process more - there are more "sounds" that exist. Learn where volume control is . My audiologist did not tell me this but it was an expectation that would likely make me nuts.

Last, and this was my recent realization that will be confirmed by people here and I will bring this to the attention of my audiologist. There is no question CI processing isn't the same as hearing. That's fine. My guess is that even after I am mapped to death, there will never be the fullness of sound that exists normally (but what's normal when you have a lifetime loss ). But you better believe that so long as mapping and remapping occur, I will push to achieve that while not holding my breath.

Sincere best of luck to you on this journey.
-- Sheri

 

[sonocativo]

Sounds for me at first were odd--very mechanical/robotic. I still have a bit of that for some sounds but for the most part, things sound like they should. I do pretty well with music but it's not 100% normal. Songs on the radio that have a lot of electric guitar sounds are bad, but over a good quality stereo, pretty good. I'm only 5 months into this though.

The speech recognition, even if it sounds strange, is SO much better!!

As for getting 2 at once. My surgeon doesn't like to do 2 at once for anyone that has residual hearing...just in case it doesn't work. If you have no usable hearing, she would do 2 at once.

Mine is about gone anyways. I really mean, you have to shout or yell basically for me to hear, if you are at a distance or in a large open area...forget it... I cant hear my son at all, he gets up and tries to talk into my ear but I still cant hear him and he gets frustrated. Its funny at times because people will talk to me and I have them to repeat many times and my son will look at them and say " Dads ears are broke" lol
My son and I use alot of basic ASL for him to communicate with me, and he uses it with normal talking as well ( so I can help explain what he is saying to others as he learned to sign before he could talk )
My eyesight is extremely sensitive, as they say you lose one sense and you gain in another, but always have been ( I can practically see in the dark ) sometimes it bothers me since minor movements catch my attention, but it has been good in alot of cases. The only thing is, reading ASL hand signals is very slow for me (especially finger spelling) as i sometimes have to figure out the letter ( I know all the letters ) but sometimes get confused still for some reason.
I have been explaining to my wife that after surgery, if I do both I will be 100% Deaf for a few months till activation and then there is possibly a learning curve to "hear" again from what I have read. I sense things more by feel (vibrations) and always have, like someone knocking on the door, I normally dont hear it but can feel it through the floors/walls, I can tell when someone opens/closes a door in the basement, bedroom, bathroom..ect.. and once I know a house I can tell you where its coming from to be exact ( which door, room...ect.) But I couldnt tell you if someone was yelling for help unless they were banging on a wall for my attention. " What are you doing tearing the place up? Oh, You've fallen and cant get up ! "

 

[sonocativo]

SBirn, Thank you for that. Its really not going to make a difference for me going completely Deaf for the CI as my audiologist said I will be within the next 2 to 4 years anyway... I actually feel that way already since I can barely hear anything unless extremely loud. I can shoot guns without any ear protection and barely hear it, my hearing is that bad.
I am normally a fast learner, But I know this will be a whole new ballgame to me.
Sometimes I wish I couldnt hear at all because not only I but everyone else gets frustrated trying to talk to me. My father-in-law is really soft spoken, nice guy, loves to talk, but I cant hear him at all. My wife and I have explained to her mom and step dad that I cant hear and still he talks so quiet. So lately I gave up trying to hear him and he was asking my wife why Im not talking to him, she told him " He cant hear you and you wont speak up" her mom finally realized I couldnt hear ( after 5 years ) while standing behind me talking while I was cooking, she went to my wife and said" he really cant hear can he?" DUH ! People know but I guess they are too ignorant to accept that? I have people swear up and down I have "Selective Hearing" oh, ok... so I listen to you when I want? NO !!! I cant hear their stupid asses...lol
Sometimes I like not hearing, they talk away for hours and then look at me funny for a response...what? what was the question? So I understand what alot of Deaf people go through with ignorant Hearies, the slow talking overly excised pronouncuations and all that, I get it too " Can you read my lips?" ect...
If worst case came to worst, id rather be 100% Deaf due to the shear fact that trying to hear is aggrivating as hell as well as people who dont understand.

 

[SBirn]

Understood loud and clear

SBirn, Thank you for that. Its really not going to make a difference for me going completely Deaf for the CI as my audiologist said I will be within the next 2 to 4 years anyway... I actually feel that way already since I can barely hear anything unless extremely loud. I can shoot guns without any ear protection and barely hear it, my hearing is that bad.
I am normally a fast learner, But I know this will be a whole new ballgame to me.
Sometimes I wish I couldnt hear at all because not only I but everyone else gets frustrated trying to talk to me. My father-in-law is really soft spoken, nice guy, loves to talk, but I cant hear him at all. My wife and I have explained to her mom and step dad that I cant hear and still he talks so quiet. So lately I gave up trying to hear him and he was asking my wife why Im not talking to him, she told him " He cant hear you and you wont speak up" her mom finally realized I couldnt hear ( after 5 years ) while standing behind me talking while I was cooking, she went to my wife and said" he really cant hear can he?" DUH ! People know but I guess they are too ignorant to accept that? I have people swear up and down I have "Selective Hearing" oh, ok... so I listen to you when I want? NO !!! I cant hear their stupid asses...lol
Sometimes I like not hearing, they talk away for hours and then look at me funny for a response...what? what was the question? So I understand what alot of Deaf people go through with ignorant Hearies, the slow talking overly excised pronouncuations and all that, I get it too " Can you read my lips?" ect...
If worst case came to worst, id rather be 100% Deaf due to the shear fact that trying to hear is aggrivating as hell as well as people who dont understand.

I'm accused of (rightfully for good and not good reasons) of selective hearing. As I go through this process, you made the point that I'm often thinking. Do I want to hear? I don't know yet because whatever the end result is, it will not be as full and rich as before and I have a lifetime of knowing that I can't stop. I've been told to stop comparing but I don't have a switch to turn off that part of my brain. All I can do is what I can do and that's still unknown.

Our stages in life are different. I think if I opt not to hear, the implications are not the same as what you may choose. My partner is fully aware of this (was before the surgery) and she has always said she will support me whatever I decide.

Take care.

 

[sonocativo]

I'm accused of (rightfully for good and not good reasons) of selective hearing. As I go through this process, you made the point that I'm often thinking. Do I want to hear? I don't know yet because whatever the end result is, it will not be as full and rich as before and I have a lifetime of knowing that I can't stop. I've been told to stop comparing but I don't have a switch to turn off that part of my brain. All I can do is what I can do and that's still unknown.

Our stages in life are different. I think if I opt not to hear, the implications are not the same as what you may choose. My partner is fully aware of this (was before the surgery) and she has always said she will support me whatever I decide.

Take care.

My wife brought it up the other night, asking if I was still considering it. She supports the issue, and I want to hear somewhat normally again but either way I wont be able to hear much longer. I love music and I play so I would miss that ( possibly go insane without music? ) Bust mostly I love to hear my son as he learns to talk. But I know there are sacrifices to make.

 

[drphil]

An aside to the above: re VCO Telephones. Notwithstanding I have/use a Cochlear Implant, I cant hear peoples' voices on a regular telephone.

Also been advised in SunnybrookToronto's experieince since 1984-one out of two persons has difficulty "hearing on the phone with an Implant.

To me -no problem just continue using my TTY.

 

[SBirn]

My wife brought it up the other night, asking if I was still considering it. She supports the issue, and I want to hear somewhat normally again but either way I wont be able to hear much longer. I love music and I play so I would miss that ( possibly go insane without music? ) Bust mostly I love to hear my son as he learns to talk. But I know there are sacrifices to make.

You have it made, Mike. Your wife supports you. I know how I feel about music. I think I said here somewhere that when I tried a digital aid (@17 years ago) in a sterile room and the dealer played classical music, I had soft tears running down my face. I knew with my ear molds that almost any hearing aid was out of the question. But, man, for a moment I was in heaven. We live in moments. So, you spend your time listening to what you can and being with your son. Then, when you can't hear anymore. You put on a CD or not and replay, "It's a bird it's a plan NO it's Mozart!" da da da da da da da da daaaaa Mozart's Symphony # 40 in G Minor So, never lose it, you just "hear" it in a different way . You always "hear" what your son has said. Both are in your heart and your soul.

-- Sheri

 

[sonocativo]

You have it made, Mike. Your wife supports you. I know how I feel about music. I think I said here somewhere that when I tried a digital aid (@17 years ago) in a sterile room and the dealer played classical music, I had soft tears running down my face. I knew with my ear molds that almost any hearing aid was out of the question. But, man, for a moment I was in heaven. We live in moments. So, you spend your time listening to what you can and being with your son. Then, when you can't hear anymore. You put on a CD or not and replay, "It's a bird it's a plan NO it's Mozart!" da da da da da da da da daaaaa Mozart's Symphony # 40 in G Minor So, never lose it, you just "hear" it in a different way . You always "hear" what your son has said. Both are in your heart and your soul.

-- Sheri

I like Cannon in D Minor...lol But yes, true that the memmories are always in my heart.

 

[HOH-ME]

Mine is about gone anyways. I really mean, you have to shout or yell basically for me to hear, if you are at a distance or in a large open area...forget it... I cant hear my son at all, he gets up and tries to talk into my ear but I still cant hear him and he gets frustrated. Its funny at times because people will talk to me and I have them to repeat many times and my son will look at them and say " Dads ears are broke" lol
My son and I use alot of basic ASL for him to communicate with me, and he uses it with normal talking as well ( so I can help explain what he is saying to others as he learned to sign before he could talk )
My eyesight is extremely sensitive, as they say you lose one sense and you gain in another, but always have been ( I can practically see in the dark ) sometimes it bothers me since minor movements catch my attention, but it has been good in alot of cases. The only thing is, reading ASL hand signals is very slow for me (especially finger spelling) as i sometimes have to figure out the letter ( I know all the letters ) but sometimes get confused still for some reason.
I have been explaining to my wife that after surgery, if I do both I will be 100% Deaf for a few months till activation and then there is possibly a learning curve to "hear" again from what I have read. I sense things more by feel (vibrations) and always have, like someone knocking on the door, I normally dont hear it but can feel it through the floors/walls, I can tell when someone opens/closes a door in the basement, bedroom, bathroom..ect.. and once I know a house I can tell you where its coming from to be exact ( which door, room...ect.) But I couldnt tell you if someone was yelling for help unless they were banging on a wall for my attention. " What are you doing tearing the place up? Oh, You've fallen and cant get up ! "

I wouldn't hesitate to get 2 implants at the same time then. Had I known how well this was going to go for me I would have done both at once..but I have residual hearing that helps, but I couldn't function with just that hearing.

I can't locate sound for anything--never could with my HA's. I am hoping I can get that back going bilateral with my CI!! Sounds like you have some low frequency hearing left, not much but some.

Love the "Dad's ears are broke"...kids are so dang cute!

 

[sonocativo]

I wouldn't hesitate to get 2 implants at the same time then. Had I known how well this was going to go for me I would have done both at once..but I have residual hearing that helps, but I couldn't function with just that hearing.

I can't locate sound for anything--never could with my HA's. I am hoping I can get that back going bilateral with my CI!! Sounds like you have some low frequency hearing left, not much but some.

Love the "Dad's ears are broke"...kids are so dang cute!

Yup, he will catch you off guard at any given momment...

 

[Angel1989]

I qualify for two CI's but my surgeon and I did one only. If you read my thread "CI surgery approved today" you can read why I was so, so, so happy I did just one.

I am completely deaf both ears. CI left ear, un aided right. I chose the side I don't sleep on for surgery.

I can't listen to music. Cochlear does not advertise strongly about music. My audi told me upfront that I probably would never enjoy music again. So far that is true. Even with my CI the phone and tv are just like before surgery.

I am happy I went through with the surgery, I can hear most conversations one on one. Loud places CHS!!!! (Can't hear shit!!!!)

 

[ecp]

I'm not positive but I don't think they'll do them at the same time even if insurance will cover bilateral. I could be wrong......

I'm getting one CI in less than a month.
My insurance is covering 100% of it BUT the surgeon doesn't like doing simultaneous bilateral CIs on adults (infants and young children are fine) because adults have usually had some exposure to sound and generally have a "good" or at least not terrible ear.

So, I'm getting my better ear implanted next month and the surgeon wants me to wait 6 months before getting the other ear implanted.

But it might depend on insurance. My surgeon told me this BEFORE he knew that my insurance covered 100% of the costs. He just prefers us to get used to one ear at a time, which i think makes sense.

 

[ecp]

I qualify for two CI's but my surgeon and I did one only. If you read my thread "CI surgery approved today" you can read why I was so, so, so happy I did just one.

I am completely deaf both ears. CI left ear, un aided right. I chose the side I don't sleep on for surgery.

I can't listen to music. Cochlear does not advertise strongly about music. My audi told me upfront that I probably would never enjoy music again. So far that is true. Even with my CI the phone and tv are just like before surgery.

I am happy I went through with the surgery, I can hear most conversations one on one. Loud places CHS!!!! (Can't hear shit!!!!)

For the longest time I was totally for Cochlear but I'm getting Advanced Bionics.
I really don't know enough to get into a war about this but from what I understand, Cochlear can only stimulate one contact at a time but AB can stimulate multiple.
I remember when I was a young kid with possibly normal or mild hearing loss and I got an electronic keyboard for christmas so that i would practice my piano lessons.
My keyboard couldn't handle chords and that used to frustrate me to no end. I could play perfectly but it wouldn't sound perfect even if I could hear well.

 

[ncff07]

There is one other aspect you should remember .... someone hit on it in an earlier post but I'm too lazy to read through the entire thing to find it ... it's possible you'll lose what little residual hearing you do have left ... some people still have that left and some don't ... the one who mentioned it earlier had their little bit of hearing left after the implant ... but after I had it done it killed what little hearing I had left in my left ear ... it's always different from person to person ...

and when it comes time and you have to choose a brand of CI I'd recommend cochlear ... that's the only brand Baptist hospital in Winston Salem had so I had to get it but after 5 years of using it I have no complaints about it ... even using the original rechargeable battery I started out with on activation day ...

 

[HOH-ME]

I qualify for two CI's but my surgeon and I did one only. If you read my thread "CI surgery approved today" you can read why I was so, so, so happy I did just one.

I am completely deaf both ears. CI left ear, un aided right. I chose the side I don't sleep on for surgery.

I can't listen to music. Cochlear does not advertise strongly about music. My audi told me upfront that I probably would never enjoy music again. So far that is true. Even with my CI the phone and tv are just like before surgery.

I am happy I went through with the surgery, I can hear most conversations one on one. Loud places CHS!!!! (Can't hear shit!!!!)

Sounds like a similar experience that my aunt has with her Cochlear. She had sudden loss and was implanted within a month of that loss and does fine one on one but can't hear in crowds, music is terrible, etc. I'm just so happy that was not my experience at all with AB. We recently had a family gathering at a restaurant. I was one month post-activation, she has had her CI's for 8 years. I faired way better than she did, could understand everyone, was able to converse in a room with 100 people all talking at the same time, etc.

I'm getting one CI in less than a month.
My insurance is covering 100% of it BUT the surgeon doesn't like doing simultaneous bilateral CIs on adults (infants and young children are fine) because adults have usually had some exposure to sound and generally have a "good" or at least not terrible ear.

So, I'm getting my better ear implanted next month and the surgeon wants me to wait 6 months before getting the other ear implanted.

But it might depend on insurance. My surgeon told me this BEFORE he knew that my insurance covered 100% of the costs. He just prefers us to get used to one ear at a time, which i think makes sense.

That is pretty much what my surgeon said/does.

For the longest time I was totally for Cochlear but I'm getting Advanced Bionics.
I really don't know enough to get into a war about this but from what I understand, Cochlear can only stimulate one contact at a time but AB can stimulate multiple.
I remember when I was a young kid with possibly normal or mild hearing loss and I got an electronic keyboard for christmas so that i would practice my piano lessons.
My keyboard couldn't handle chords and that used to frustrate me to no end. I could play perfectly but it wouldn't sound perfect even if I could hear well.

I've had great success with music with my AB implant. It's not perfect yet but it's pretty dang close.

There is one other aspect you should remember .... someone hit on it in an earlier post but I'm too lazy to read through the entire thing to find it ... it's possible you'll lose what little residual hearing you do have left ... some people still have that left and some don't ... the one who mentioned it earlier had their little bit of hearing left after the implant ... but after I had it done it killed what little hearing I had left in my left ear ... it's always different from person to person ...

and when it comes time and you have to choose a brand of CI I'd recommend cochlear ... that's the only brand Baptist hospital in Winston Salem had so I had to get it but after 5 years of using it I have no complaints about it ... even using the original rechargeable battery I started out with on activation day ...

Not to get into a war but I disagree for the reasons above about brands.

I do have some residual hearing left in my implanted ear. I"m hearing across all frequencies--just and very high volumes. I don't really notice it day to day but when I was tested at 3 months post activation I could hear the beeps about 20 dbl louder then what they normally test at. I think the only thing I really get any benefit from in that ear's residual hearing is a little in the deep bass sounds. I was concerned about losing that but with the amazing technology that allows me to hear at close to 100% normal, those concerns went away very quickly.

 

[sonocativo]

I just want ones with options, Not just "Here is and implant and thats it" type of deal. I want to make sure I can upgrade or add-on any options I may eventually need. as I yet still dont understand some of the features everyone has mentioned like FM and the such. I want to connect to TV, Radio, Computers...ect...and all that as well.

 

[BleedingPurist]

I just want ones with options, Not just "Here is and implant and thats it" type of deal. I want to make sure I can upgrade or add-on any options I may eventually need. as I yet still dont understand some of the features everyone has mentioned like FM and the such. I want to connect to TV, Radio, Computers...ect...and all that as well.

Mike,

I suggest you read over cochlear implant HELP. It will cover the entire process and the equipment. It's everything you need to know.

AB does provide the most options internally and externally. There is no "here is your implant and that's that." They have the largest number of different strategies available to you as well as flexibility of wearing options (helped by microphones in multiple locations.) External processors will come and go, so deciding based on that alone is not the best idea.

Currently, the ComPilot provides wireless connectivity as well as wired connectivity for non-bluetooth based components. While you do need to wear the ComPilot around your neck when using the streaming features, the wireless connection between the ComPilot and Processor is completely interference free (not like a TCoil loop) and has pristine audio quality. You can essentially plug into anything. As far as FM and all of that... with your hearing history you stand a good chance of not requiring any ALDs. It is a very different world from struggling with hearing aids.

To be comfortable with any decision, you should be sure to know what you are getting. That way you can move forward with relative peace of mind. When it came time for me to choose what I wanted and go into surgery, no one could change my mind.. not even an audiologist who favored another brand (and no longer has a job as a CI audiologist.)

 

[BleedingPurist]

For the longest time I was totally for Cochlear but I'm getting Advanced Bionics.
I really don't know enough to get into a war about this but from what I understand, Cochlear can only stimulate one contact at a time but AB can stimulate multiple.
I remember when I was a young kid with possibly normal or mild hearing loss and I got an electronic keyboard for christmas so that i would practice my piano lessons.
My keyboard couldn't handle chords and that used to frustrate me to no end. I could play perfectly but it wouldn't sound perfect even if I could hear well.

I was just like you! I was originally just going to go with Cochlear until I did more research.

I also had one of those electronic keyboards that I got for Christmas! It was a Casio PT-80. The keys could only play one note at a time, a fact that wasn't realized until it was too late. Definitely frustrating and limiting while taking lessons. After that I moved on to the guitar.