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What changed my mind about getting a CI

I wanted to document my reasons for not pursuing a cochlear implant before now and that was the point of my other post last week. Now I want to write about what finally changed my mind.

I heard about the hybrid CIs and that they were in FDA trials. I sent an email to the trials group at Med-El asking about their DUET hybrid Electric-Accoustical implant. I was told that my hearing loss was too profound and that I’d be better off with a regular CI. The person also suggest talking to one of the implant centers involved in the trials of the hybrid implant because they have a new surgery technique and a new flexible electrode that have been implanted without damaging all residual hearing.

So I emailed the audiologist at UNC Chapel Hill. She took a while to write back and I was eager enough to hear that I even called and left a voice mail message.

When she did email me it was full of interesting information. I was pretty excited. She said that I Was a good candidate for a hybrid cochlear implant the problem is that they are still losing 5-10 decibles even with the shorter electrode. That puts my severe profound loss into the range that hearing aids don’t help with.

We decided to set up appointments for me and in less than a week now I will be knowing how we will move forward. I know I only want to do my worse ear at this point. I think the regular CI might make the most sense since it’s proven technology… But if they think I’d be good for the hybrid study I’m fine trying it. I know they have reimplanted several people with a normal CI after they didn’t do well with the hybrid.

Worst case scenario I still have another ear. I’ve tried band rehearsal with my right hearing turned off. It’s rough but I can still hear the guy next to me and myself. I’d get used to it.

And while I know everyone says “don’t get your hopes up” it’s hard to not be excited about the results people have had. I’m a good candidate. I’ve worn and depended on hearing aids in both ears for 15 years and I’m not pre-lingually deaf.

I’m glad work is so busy. It will make time go faster.

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8 replies on “What changed my mind about getting a CI”

  1. Share

    Cynthia Roberson says:

    I envy the fact that a hybrid CI will not take away residual hearing! I have had regular Freedom CI for three years now… my family sees the difference of improvement. I have worn two hearing aids and cant really tell if I can hear better now than before.

    Can you please explain what does it mean even when hybrid CI loses 5-10 decibels that it still will work for your severe profound loss?

    1. Share

      Sara says:

      Hi Cynthia, I emailed this to you but will post it here for others.

      I’ll know more details about the hybrid CI after my appointment on Monday. The way I understand it now is the 5 to 10dB loss from the hybrid CI electrode compares to a complete loss with a normal electrode. The perfect hybrid CI candidate would have a moderate/severe loss in the low frequencies and a profound loss in the high frequencies. So the hearing aid part would still work for the low but you would gain the high frequencies with the CI. Since my loss in my worse ear is severe to profound already if I were to lose 10dB at the low end I might not be able to use a hearing aid. My better ear would be better suited to the hybrid.

      I’ll be sure to share what the audiologist and surgeon say next week.

  2. Share

    Evelynne says:

    This is very interesting. I find that only using one hearing aid makes me feel sort of dizzy, but it won’t be quite like that for you — you’ll be hearing out of the CI ear too. I wonder if having the good ear with “normal” (to you) hearing will help the CI ear learn to recognize the music it’s hearing. Although it sounds like it could also be confusing — you’ll be hearing it two different ways simultaneously! It’ll be so interesting to see how this works out.

    1. Share

      Sara says:

      My local audiologist, who I don’t really know super well yet, has told me a few times that people with one CI and one hearing aid have the best of both worlds. I haven’t found anyone to talk to who is in that situation though. I guess I’ll find out. (Lots of people around with bilateral CIs though).

      It always amazes me that with either one of my ears by itself things sound very garbled, but with both everything’s much clearer.

  3. Share

    Candy says:

    Like you, I was interested in this Hybrid Trial, but have yet to meet with anyone about it. I have mostly corresponded with the people within Med-el. A big procrastinator when it comes to medical arena, I need to start moving. My option is to go with a digital in my better ear and either a hybrid or C.I. in my bad ear. I also do not want to loose any residual hearing and if I do, that’s one reason why I don’t want my better ear implanted (because even tho I’m VERY HOH in that ear, I still can use the phone without a hearing aid.) Hopefully soon I’ll get moving and will share my story on a new blog. I’ve enjoyed reading your blog thus far. In your other post, you asked if you were that deaf. Looks like you are for certain frequencies but not all. It’s amazing how one would assume one isn’t totally deaf and then someone tells them they’re too deaf and you’re looking at the audiogram and are like, ??? 🙂 Audiogram only tells part of the story, the rest is how one manages to overcome obstacles with their hearing with practice whether one realizes it or not.

    1. Share

      Sara says:

      Yes. Exactly. I can’t convince anyone that I work with or am friends with that I am deaf… and yet I’m too deaf for any of the new technology coming out!?

  5. Share

    Sara says:

    So you’ve reconsidered about getting the cochlear implant? Please make sure you ask lots of questions to any specialists or anyone that has gone through this before. Personally speaking, I’d never do such a thing even if I was late deafened. But I think CI’s are typically perfect for late deafened individuals because they already have an idea what sound, er, sounds like. But the problem with that is that they may become dissappointed at the odd sounds the CI make that aren’t fully sound. To that, I’ve alsways imagined though that people can just be a bit creative and fully imagine the sounds after they get used to the machine since brains are amazing and capable organic machines. I’m sure you very literally could just “make up” all the hollow sounds for the full sounds if you just recall what you know.

    It is troublesome being stuck between two worlds, isn’t it? One world, the majority world where you grew up, hearing. The other, minority yet in bloom behind the bush, deaf. It seems to always boil down to whether or not you consider yourself defected by your hearing loss. People shouldn’t have to define themselves by one word; sure, you’re deafened, not deaf, you are also Sara the engineer, the rare sara without a “H”, the youthful Sara. However you look at yourself, it’s still you.
    What I’m trying to say is, maybe deciding to get the Cochlear will define other portions of you and make things easier. However, maybe getting that Cochlear will make it more obvious for people that you were deafened and start defining you like such.

    🙂 Quite the… predicament, eh? Just make sure you ask tons of questions, quell any curiousity first, then weigh pros-cons and finally decide. You are still young, you have time.

    <3 -Sara (I’m hoping I made sense… it’s awfully early in the morning, but I’ve been pondering what to say about this for nearly a day to make sure I say the right thing!)

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