Managing my expectations

Cochlear Implants
#1

Hi all, hope you had a lovely xmas!

I’m a 35 year old who has been severely to profoundly deaf since the age of 3 and has worn hearing aids my whole life. A few days ago I was told my hearing loss has worsened and I should revist the idea of getting at least one CI.

My audiogram is in my profile picture.

Given it’s the holidays, I’m catching up with the audiologist to discuss the next steps in the new year. With that I thought I’d ask some immediate questions now, and perhaps someone could give me some things to think about:

  • I basically cannot hear any high-pitched sounds that are present in speech, even with the hearing aids. Will the CI enable me to hear this?
  • Will the CI bring me back to baseline hearing, or will it bring me back to a mild hearing loss, but across all frequencies?
  • I speak well but currently have a deaf accent. With the CI will the deaf accent go?
  • I rely quite heavily on lip reading when I’m meeting people for the first time, or discussing new topics. Will the reliance be not necessary after the CI?
  • I currently get listening fatigue, after a 30min call - and am required to really concentrate even during a call. Will this subside when I get the CI?
  • I seem to have really high expectations, how do I manage this?

Cheers

#2

The answer to all your questions is yes except maybe one or two.

You can not expect to hear all frequencies as a normal person hears. CI is not that good.

You have a good chance of hearing almost normal again, especially in the speech range frequencies. CI is not as detailed as normal hearing so music will take some getting used to. I am at 3 years and some music, not all continues to get better.

CI takes practice or rehabilitation to get the best out of it. Each of us are different on how long it takes to get the most out of CI. It can be frustrating at times but hang in there

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#3

You will likely get lots of advice from people on the forum who have experience with CI. I have none, but I’ll give generic life advice. I’m often disappointed by something I’m really excited about and looking forward to, but seldom disappointed and often very happy with things I have modest expectations of. I’d encourage tempering your expectations and being prepared for a fair amount of hard work.

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#4

Agreed with both of the above. If you get optimal outcomes with a CI, the answer to all of your questions is yes, mild loss across the board not normal, deaf accent reduced maybe not gone maybe reduced more with the support of speech therapy in a way that couldn’t have been done without the CI.

It sounds like there is quite a reasonable chance that you will get optimal outcomes if you are ready to put in the work, but the potential always exists that you will not have optimal outcomes even if you do put in the work. The worst outcome, of course, is loss of all hearing in the implanted ear and no CI function, or nerve interferance that makes CI use impossible, or other surgical risks unrelated to CI use that cause lasting harm, but chances of this are pretty low. The medium outcome is improved hearing with the CI but not as improved as you hoped. It is probably more likely that you will have good outcomes, if that is what your CI team is saying. But if you expect the optimal outcomes and don’t allow that worse outcomes are possible . . . yeah, you could end up disappointed. Maybe someone has figured out the best way to navigate this risk/reward/anxiety calculation, but I haven’t.

That said, if I were in your position I’d go for it.

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#5

Well, that saves me a bunch of typing, yeah this is pretty much exactly what I would say.

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#6

Cheers for the responses. With that, is it normal to do the bad ear first for CI? Just thinking it through that if the bad ear got the CI and it didn’t hold at least my good ear can continue strong.

#7

@Neville my apologies I’ve accidentally flagged your post.

#8

No it’s not necessarily the bad ear first. My surgeon did my good ear first because my other ear hadn’t heard high frequencies for over 6 decades. The surgeon will make that decision for you though. Your best bet would be let your surgical team guide you.

In my case my R ear has the CI. My WRS went from 26% to 94% at the end of the 12 months of follow up testing. Most of the CI recipients on the forum have got really good results. As others have said rehab after is so very important. If you put in the hard work on teaching your brain to interpret the electrical stimulation. It’s not as easy as walking in the park either. I did 2 hours every day for the first 12 months to get my 94% WRS.

Go into this journey with low expectations, then when you achieve high scores at the end you can celebrate.
Good luck on your new hearing journey.

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#9

@Deaf_piper Excellent results! The post op rehab I’ve heard is critical. Who actually guided you through what training was required?

#10

@goldstarfun I have Cochlear N8 now. On activation day I could understand some words. By my first mapping I could understand all speech and communicate well with just my CI ear. I tried a few of the apps my AuD recommended but found them boring. So from then I just streamed book after book, podcasts and music.

As @Raudrive mentioned music is a real tough gig. It takes hours of listening to teach the brain to appreciate music again. Then not all genres will click in the brain either.

#11

Already some comprehensive responses posted, but I’ll answer the dot point questions with my experiencea.

  • Yes, you’ll have access to high pitched sounds. It took a little while for them to fill in/wake up for me as sounds above 3khz hadn’t been heard for four decades.
  • it’ll get to a level of mild heading loss
  • Since you’ll have access to the higher frequencies, being able to hear the softer speech sounds would give you the opportunity to actually speak them. Will require a conscious effort to speak them however, I still have to make sure I’m saying the s and sh sounds after a lifetime of not really doing so.
  • Lip reading is still a very useful tool for achieving clarity. You may be able to listen and follow conversation without needing to see the speaker’s lips, but difficult listening situations still would need all the extra help.
  • I’ve found listening fatigue is markedly reduced. Though I find I’m dealing more with an abundance of stimulus and need a bit of quiet to relieve the tension.

Regarding good ear vs bad ear. You’re more likely to get the best result out of your good ear.

Good luck on your journey!

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#12

Also, remember to ask about possible side-effects, like infection or if there are drugs involved. I don’t have a CI (yet), but I’ve had enough medical fun to temper my enthusiasm with a dose of, “what’s the downside?”. There isn’t always one, but sometimes there is an unintended cost, especially when it comes to surgery, drugs and other medical advancements.