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What has surprised you the most on your CI journey?


Mary Beth

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As I approach the 9th year with my CIs, I find myself reflecting back on the journey.  Many CI candidates have similar questions about the surgery, activation, rehab, timeline, quality of sound and music.

But today I woke up thinking about what surprised me the most on my CI journey.  And I would love to hear your responses.

 

Tagging some members to get things started.  I hope many more members will join in too.

@Kylie

@Joan

@Tim 

@Lauren

@Justin 

@Dianna

@tmscarlett10

@Betsy

@Ralph34

@Jdashiell 

@Roy

@Hila

@KittKatz

@MallaRuth

@VeroNika

@Vera

@John R

@Jared Charney

@Heather W

@JoceSky

@DianeH

@NathalieM

@Anthony Canada
 

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I was amazed at how much more functionality I attained than I'd been led to expect. At the heart of this was that I hugely underestimated the brain's ability to adapt to a different kind of auditory input.

This is what Sound of Metal got so very wrong. 

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I have been most surprised by…

the community of CI users and the friendships this journey has created

the quality of sound for both speech and music- how the subtleties are present- so so so much better than all those vocoder examples!  

how I no longer feel like I have a hearing loss after so many decades of having my hearing loss be ever present in my days

how going to appointments with my CI audiologist is fun! Much different from the dreaded annual hearing checks before CIs which made my progressive loss so evident

the opportunities to help other CI users and people considering CIs on their own journeys

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@Roy

I agree.  The brain’s neuroplasticity is amazing!  It led me to read The Brain That Changes Itself.  Amazing!

And this power of the brain is what makes me wonder if SSD CI users (1 CI and 1 typical acoustic ear) have more difficulty achieving a fuller natural sound with the CI side alone because their brains benefit from auditory input from their typical acoustic side so never have to learn to rely solely on the CI or CI and an impaired ear using a hearing aid?  The brain is very efficient.  It does not waste energy on things which are not needed.  SSD CI users brains get very skilled at merging the auditory input from both sides to achieve a full natural blended sound.

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Aha! I thought I was supposed to choose just one thing! I second all @Mary Beth's points, especially that I no longer feel like a deaf person. My 35 years of progressive deafness was an ever-growing burden I carried every day, through every human or environmental interaction, substantially darkening my life. And now that burden is gone.

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I have to say that I am inclined to believe Mary Beth’s hypothesis that SSD and bimodal (still using a hearing aid on the other side) may have delayed brain adjustment. As a bimodal user only 18 months in, my adjustment has been slower than I anticipated. But I am amazed that my CI side is now my stronger side! As my progressive loss continues on my HA side, I’m encouraged by the CI user community’s reports of progress in hearing as the brain adapts. I was also surprised at how wonderfully supportive this community HearPeers is!

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45 minutes ago, Mary Beth said:

As I approach the 9th year with my CIs, I find myself reflecting back on the journey.  Many CI candidates have similar questions about the surgery, activation, rehab, timeline, quality of sound and music.

But today I woke up thinking about what surprised me the most on my CI journey.  And I would love to hear your responses.

 

Tagging some members to get things started.  I hope many more members will join in too.

@Kylie

@Joan

@Tim 

@Lauren

@Justin 

@Dianna

@tmscarlett10

@Betsy

@Ralph34

@Jdashiell 

@Roy

@Hila

@KittKatz

@MallaRuth

@VeroNika

@Vera

@John R

@Jared Charney

@Heather W

@JoceSky

@DianeH

@NathalieM

@Anthony Canada
 

What a great question, Mary Beth! What surprised me the most was how gosh darn lucky I felt that I did not experience much of the negatives that I had heard prior to my surgery. I know that my experience may be unique, and I felt unbelievably grateful and crazy lucky. Voices sounded normal - right away and never robotic. This was my biggest fear as I had young grandkids and wanted to hear their adorable voices clearly. Also, I am a ballroom dancer and was told music would be severely compromise. This was just the opposite for me and I broke down crying during my first class after activation when I heard so clearly the instruments in the music. After so many years of relying on my partner and the floor vibrations to "keep the beat", the feeling was and is indescribable - just outstandingly beautiful. So FEELING LUCKY is what surprised me the most and the feeling has not left me. Kudos to all who have taken this amazing step and good LUCK on your journeys! 

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What a great question, Mary Beth! What surprised me the most was how gosh darn lucky I felt that I did not experience much of the negatives that I had heard prior to my surgery. I know that my experience may be unique, and I felt unbelievably grateful and crazy lucky. Voices sounded normal - right away and never robotic. This was my biggest fear as I had young grandkids and wanted to hear their adorable voices clearly. Also, I am a ballroom dancer and was told music would be severely compromise. This was just the opposite for me and I broke down crying during my first class after activation when I heard so clearly the instruments in the music. After so many years of relying on my partner and the floor vibrations to "keep the beat", the feeling was and is indescribable - just outstandingly beautiful. So FEELING LUCKY is what surprised me the most and the feeling has not left me. Kudos to all who have taken this amazing step and good LUCK on your journeys! (sorry if this posted twice...) 

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I agree with so many of the things others have already said.  How easy it was, how brilliant it has been, how extraordinarily lucky I am to be living at a time, and in a place, where cochlear implants are possible.  But the thing that really SURPRISED me was birdsong.  I’d not heard it for forty years and I thought I didn’t care.  I cared about losing speech and was desperate to get it back.  I brushed away the hospital telling me that I would hear other sounds too..  Right, yes, whatever!!  Not bothered.
 

But when I heard birdsong again I was blown away.  Hearing it, and remembering it, made me cry.  Every Spring when the birds are singing their hearts out here in rural Yorkshire, UK, I love it all over again.  And usually have quite wet eyes…  Birds sing in springtime and I really, really care.

Yes, the best thing has been speech.  The biggest surprise has been birdsong.

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What surprised me the most was being able to hear things that I forgot existed. For example the difference between ask and ax. While hearing people often make jokes about the difference between the two after 30 years of deteriorating hearing the difference was just not there. Now I am picking up on differences in speech that I haven't noticed in forever.

@Heather W as a fellow CI + HA user when I'm not at work I often don't wear my HA. I want my brain to use everything the CI can give. I treat each side as a separate thing and my rationale is if I don't train each one independently and together I'm not going to maximize what I have.

I was surprised about music. Everyone was such a naysayer about the quality and how everything would sound different that it was somewhat off putting. I get the need to give us realistic expectations so that our mental health doesn't suffer but the way they painted it made me think I was giving up my enjoyment of music. Music keeps sounding better everyday.

I knew my social interactions would improve but I didn't realize just how far they would improve and how much that would affect my mental well being.

Next week I'm 6 months in and I'm looking forward to the pleasant surprises the next 6 months bring.

 

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When I was briefly bimodal I was surprised, once my CI side finally took off, how much worse my right ear suddenly seemed (or maybe became). A new hearing aid briefly improved things for me but there was a drop off prior to my second surgery and other hearing issues that, among other things, led to me going bilateral  

I also suspect that the CI helped improve my voice a little since I can actually hear myself well now. Still more voice work to do but am getting there. I don’t have nearly as many vocal cord dysfunction episodes as I used to. 

Same as Mary Beth, I don’t dread getting boothed at the audiologist anymore. 

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this is always nearly impossible to articulate but the fact that I went from a very serious deep and disturbing depression (that most certainly rippled through myself and my wife and kids) after my sudden hearing loss (SSD) and raging 24/7 tinnitus to absolutely regaining my life and completely I might add. it doesn't matter to me one bit that I won't ever hear again "normally" what I've been given to me is nothing short of  a minor miracle and I'm not at all religious. I'm also constantly surprised by how many people I've met on my photo shoots (just happened again at Northeastern about a month ago) who have SSD and really haven't been told much by their audiologist on the possibilities of a cochlear implant. Lastly, I'm surprised by how much I dearly love speaking to possible candidates for CIs and knowing that my experience has already helped a couple of people chose to have the surgery and have reached back out since to thank me for encouraging them to do so. Also, Mary Beth I'm never surprised by how much you have inspired me !

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This topic may be my most favorite discussion on HearPeers!  I love reading your posts.  I hope more members will join in the fun.

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My experience with my first CI was similar to @Lauren's. On the advice of my audio, I used only the CI for the first month after activation. When I finally put the hearing aid back in my other ear, the sound was so weak and distorted compared to clean, strong CI signal that I quickly decided to stop using it. It just made everything worse- quite a lot worse. So as surprises go, that one was a bit of a bummer.

Having decided that, and now being effectively single-sided deaf, my next obvious step was to have the other side implanted. Which I did 14 months later. I'm now in the 11th year of my first implant and the 10th year of my second.

The details do matter, though. In my case, my "good" ear was only marginally better than the one I first had implanted. Either ear was already a CI candidate, so my choice was pretty easy.

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I have been implanted for a year on my right and 6 months on my left and my hearing is perfect, these truly are medical miracles. We often may overlook the wonderful audiologist team we have and the science and technology behind these little devices that sit behind our ears. 

I want to give my thanks to Chapel Hill I would not have the outcome that I have without them.

 

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Have to add that this thread was incredibly well timed. 

I also get surprised with how many questions I field now vs never when I had HAs. Usually it’s random people in public with a quick question or two, but today a long-time family acquaintance and I spent about an hour together so I could answer questions. We’d been trying to meet up since December and our schedules finally matched up. She’s late deafened, only wearing hearing aids the past few years (currently in her 80s) and is scheduled for right side CI in late February. 

She’s very apprehensive about the surgery and outcome so most of her questions were about that. It’s the first time I’ve shared specifics with someone in person other than my audiologist. I even let her know how much hearing I gave up first in my left when I was a little nervous too, then 1.5ish years later I happily and without hesitation gave up more in my right ear to go bilateral. She said near the end of the meeting that she felt better about the process. I have my fingers crossed that she doesn’t cancel the surgery. 

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@Lauren

A long time close friend of ours in her 80s had CI surgery 6 months ago.  She had gotten to the point where hearing aids no longer allowed her to hear well and she was so frustrated.  I attended all of her appointments and have mentored her on her CI journey.  I was prepared to work with her each week on training her brain to use the new auditory input after activation.  But at activation, she heard and understood speech immediately.  It sounded odd but was immediately understandable.  Guiding her aural rehab has been so easy.  Last week we were together in a group and watching her join in conversations without even looking at the person speaking was wonderful.  She is staying bimodal (1 HA and 1 CI) at the moment as the little hearing she has in her HA ear brings a fullness to music for her.  I am so happy that her CI journey has been so easy.  I hope your friend is as fortunate.

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The surprises I’ve had during my first 10 years as a CI users are too many to recall! To name just a couple:
— The miracle of actually hearing better as a (now) 80-something than I did as a pre-schooler or any time thereafter (my hearing loss progressed from mild at birth to profound by age 40). Never in my wildest dreams did I think I’d ever hear so effortlessly!

— The fact that when anyone asks me about my cochlear implants I can’t stop talking about them! Can’t believe I once was a frustrated introvert who shied away from as much social contact as possible because my hearing was so poor. Now I relish that contact and love to share my CI experience with anyone who will listen!

— Truly appreciate friendships I’ve made with other CI users and the support of our CI community 

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Some surprises 

Hearing  others converse  without listening. So Suprising I sometimes didn't even know how it happened.  

Being able to learn musical instrument which I didn't think be possible again

How often I'm forgetting I have ci because the being able to hear now is pretty convincing! 

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  • 3 weeks later...

What surprised me most, is how fast the time has gone!! Lol. I didn't realize that I've had my implant for three years already!

What also surprised me was also how quickly that I was able to understand speech, and all the new sounds around me that I'd never noticed before. It's so cool! 

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  • 2 weeks later...

It's amazing to read experiences of others which reminds us of the moments we have faced the same. We all have almost suffered from the same pain and have been blessed by CI technologies. Lucky to live in times where we have this advanced tech and so many people around to help us understand and get through it. It couldn't have been easy before a decade ago. 

I take this opportunity to thank everyone in this community who has genuinely helped people to get through their CI journey and still do. The future has never been so bright. 🙏🙏

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