Hello From Arkansas

[lions2017]

Hello all. i am currently looking into getting a Cochlear Implant. I am 35 years old. I began losing my hearing when I was 9 years old. I have nerve deafness, and I am told that I am down to 24% in the area of speech recognition. I should also mention that I was born totally blind. What I am seeing so far from researching the pros and cons, is that speech perception with the implants is usually pretty awesome. Music on the other hand, is very poor. I have been told that my music appreciation will drop to zero. I am wondering if any of you play music. If so, do you play solo, in a band, or both? Thank you in advance.

[Mary Beth]

Hello and welcome.  My hearing loss began at age 13 and I was implanted at age 51.  Growing up, I played several instruments and was active in several bands/orchestras throughout school.  As my hearing loss progressed, music became more and more difficult.  I donated my piano years ago when it just sounded like noise.  Amazingly, these CIs have returned music to my life.  I enjoy listening to all kinds of music and can learn the lyrics to new songs just by listening.  I haven't been able to do that in decades!  I often play Name That Tune on car rides and am amazed that I have been singing incorrect iyrics to songs for years unknowingly.  I returned to playing the piano and am taking weekly lessons.  It is so much fun to play music again.

 

I approached music with my CIs the same way I approached speech.  I trained musical pitch with various music apps for music majors.  I did not expect music to sound great right away so I was not discouraged when I began listening to music actively again.  Speech started off sounding like static and beeps and evolved into very natural sounding voices so I trusted that music could  do the same.

 

A few months ago, I recognized the sound of a muted trumpet from the bar area at a restaurant which was not visible from our seats.  Welcoming back the voices of instruments has been awesome.

 

I love music and am so happy that these CIs returned it to my life.

 

i hope your journey is just as rewarding.

[Hicksy]

I'm not nearly as far along as Mary Beth but the realization of just how much of the music I was missing was a huge factor in my decision to get implanted. I just love music, even as hard of hearing as I was from an early age. I'm only at 7 and a half months now and while a long way from perfect, music is starting to sound great again. I'm tinkling on the piano a bit for the first time in years and the middle octaves are starting to sound normal while the higher and lowest ones are still undecipherable. I've a long way to go to get back to "normal" and some of the music still sounds strange but I am so far better off than before, no question.

its getting better every day is all I can really say. Even as strange as some of it sounds, I'm hearing so so so much more and the brain will eventually figure it all out.

I listen to music every day but bliss to me is sitting back and putting a Kraftwerk album on the turntable and hearing just how much of it makes sense?

[Mary Beth]

Hicksy,  Music is a gift that reveals itself slowly with our CIs for many of us.  I didn't start playing the piano until 15 months after my first activation.  Keep playing.  It will get better.

At first, the piano notes sounded different each time I sat down at the piano.  Smile.  Maybe you can understand that.  Over time, that goes away.  The notes get established and remain constant once again.

Enjoy your return to music.

[Hicksy]

Oh I know. Some notes sounded flat at first but after a few tries started to sound better. I'm pretty sure the piano needs tuning though. Been through a couple of moves... I forget, are you in the GTA? Can you recommend a piano tuner? 

[Mary Beth]

Now that just wouldn't be fair at all.......playing a piano that is out of tune!   Smile.   Definitely must get that fixed.  Smile.  I am in the northeast corner of New York.

[Kara of Canada]

Welcome Lions2017! Music has come back to me also. I was unable to listen to music at all before implantation so I am so thankful. It did take time to come back as Marybeth said. I was at the three month point post activation before I could even start listening to music. Now I'm 20 months in and I am listening to all new music I haven't heard in 20 years!!  It sounds awesome!! Best of luck on your journey. 

[Al West]

Hi Lions2017. I'm hardly qualified to render opinions now. I have only about 3 weeks between activation of my implant (only one) and now. Others who have responded to you have words of wisdom. I'm finding, like so many others, that it's going take quite some time before things will sound more normal. I'm barely at the stage where I can understand some words and phrases. Everything seems to be in monosyllables.

Enough of that! The important thing for you is to continue making progress toward an implant. I still have a hearing aid in one ear that occasionally will help me understand things when the implant fails me. However, I can tell that my hearing days are numbered - this is my motivation for getting at least my first implant. Hear Peers is a big help toward coping with my transition - I hope that you will find the same comfort.

 

 

[Mary Beth]

Congratulations on activation @Al West!  It gets better.  Hang in there.  Have you checked out our aural rehab topic?  There are a lot of terrific ideas of how we can do aural rehab with our CIs independently with apps and internet sites.  Aural rehab really helped me a lot.  Wishing you the best!

[lions2017]

Thank you all so much for yor responses. The thing is, I may be able to take advantage of EAS, which is electric acoustic stimulation...Or something like that. But I'm concerned, because I don't want to cause even more damage to the residual hearing that I do have. Any thoughts would be greatly appreciated.

[Mary Beth]

I have friends who use the Sonnet EAS and like it a lot.  I didn't have enough hearing to qualify for EAS even before surgery.

 

Some friends with EAS have the Flex24 and others have the Flex28.  Surgeon skill with preserving residual hearing seems very important.

 

There are studies that show the percentage of users who keep their residual hearing over time.  If you search for it, it may pop up.

 

There are never any guarantees with CIs and at some point all of us took a leap of faith.  I am happy I did.

[lions2017]

I think probably the number one factor that I try to keep in mind when it comes to success with a CI, is atitude. That is also what people have told me. In doing research on the CI, one thing I have noticed, is that I have had to wade through a lot of misconceptions and such. Some of those simulations I've heard or horrible! But I don't see how you can simulate a CI, because each person hears differently. Research is a bit frustrating. But I really do appreciate these responses. Trust me, It helps a lot. Thank you so very much!

[Mary Beth]

Those CI simulations of how speech and music sound with a CI are way off.  I do not hear anything that sounds like that!  If I did, I would not enjoy music so much.  Since we actually hear with our brain, and not our ear, I am not sure how they can mimic the sounds we hear.  Do not let those simulations scare you.  Things do not sound like that.

On the other hand, I suggest you do not watch all of those YouTube videos of CI activations where people understand speech right away.  That only happens to a small percentage of people.  Most people have to adjust to the CI signals and do not understand speech immediately.

Everyone's journey is unique.  And everyone's patience level, willingness to train, frequency of MAPping appointments and benchmarks used to determine success in real life are different.

I have been implanted for over two years and am still noticing improvements, especially with musical pitch.  I enjoy training so continue to train with my CIs.  The types of training I have done changed over time.  At first I trained for speech in quiet.  Then speech in noise. Etc etc.

It's a big decision and requires quite a commitment in order to get the most from your CI.

[Hicksy]

Lions2017, in regards to your statement about damaging your residual hearing, that was my single biggest fear also. I qualified for the Sonnet EAS but unfortunately I lost the residual hearing but as I have mentioned a few times here in other posts, this failure upset me for about a whole 20 seconds I would say. What I lost (not a lot) to what I gained (words can't really describe) just makes reflecting on what happened useless. 

This is my view only of course. Both my ears tested about the same going in (really bad-about zero word recognition unaided) so I still have a bit of hearing in my other ear so this may have softened the blow of losing the residual in the implanted ear.

My audiologist suggested about 10-12 years ago I consider an implant but I didn't figure my hearing had deteriorated enough so I kept putting it off until the day came I just had to admit to myself that the chance was better than the risk as I was withdrawing from life and avoiding situations and just really missing so much, in regards to everyday life and especially music (which again was my greatest fear of losing strange as that may sound)?

So the day came for me and I expect most of us here that I decided the risk was better than continuing as I had. Rolled the dice, had a successful operation except for the residual hearing and couldn't be happier. Best of luck on your decision. 

[Mary Beth]

@Hicksy,

Sounds like your CI journey is going wonderfully.

I did not have any hearing in my right side which was implanted first so there was nothing to lose.  The journey with that CI amazed me so much and so far exceeded my highest hopes.  By six months, I was no longer wearing the HA on my other ear as it was of no help.  I was so ready for my second CI.  At eight months, I was implanted on the left.

I had some hearing in that ear but did not qualify for EAS and had a progressive loss so preserving that hearing was not a priority.  I did lose all of that residual hearing.  It was an adjustment at first to not be able to hear anything at all when the CIs were off.  That took a little getting used to.  But after I got used to that, it just became my new normal.

Hearing with two CIs has been amazing.  

[Hicksy]

I should have mentioned in my post that my hearing loss was such that HA's were pretty much useless for me so I didn't really have an alternative to the CI. At 7 and a half months now and if offered the chance at a second implant would seriously consider gambling with my remaining residual hearing but just having the one has so much exceeded what I hoped that I'm more than fine with that (for now perhaps but down the road??? )?

[Kara of Canada]

@Cara Mia is one of our members that has an EAS. She may offer some insight.