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CI Regrets??

Discussion in 'Your Living Room' started by No thanks, Apr 6, 2021.

  1. No thanks

    No thanks Member

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    I am beginning to consider cochlear implants. I have very good hearing in my left ear, but almost nothing in my right. My Dr. said that I am a candidate for CI but did not push it. I am able to hear in many situations, but there are also many situations where I have trouble, especially noisy, indoor places (eating outdoors due to Covid has been great for me, but the masks and dividers have made hearing much more difficult). I have little/no directionality. This degree of hearing loss has been going on for about 5+ years. A recent article I read about CI candidacy stated that profound HL for 10+ years for SSHL is a contraindication (possibly b/c the brain may have lost the ability to process the impulses???).

    I have read the previous posts of those who have been pleased with their decision to have an implant. I'm wondering if anyone has regrets in having one, or has had a bad experience with one. Also, for others in my situation, what were some of the factors leading to your decision to either get one or not. TIA!
     
  2. redwing1951

    redwing1951 Well-Known Member

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    Thanks for posting this. I am in the same boat as you. I am a candidate for implant but have not taken that step to do so. Will be interested in responses!
     
  3. Bulldogs

    Bulldogs Well-Known Member

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    Hello No Thanks.....
    Love that name.

    A member here and good friend of mine just got a single sided Implant and he absolutely loves it. He got his at Emory University from Dr Mattox.

    I am in same boat as Larry and Red. Considering it but so far have held off.

    like me Larry has had a labyrinthectomy (Laby) about 10 years ago just like me. He as implanted in his Laby ear after 10 years and he could not be happier.

    He spends most of his time golfing and does not come around here much but if you want his phone number to call or text him please let me know.

    good luck
    Joe
     
  4. June-

    June- Well-Known Member

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    I don’t because I cannot. The nerve in the bad ear is gone. I am not sure if I would have been brave enough to but the thing I really miss is the ability to echo locate. If it would have given me that in a reliable way, I probably would have gone for it. Having said that, I have been unilaterally deaf for 24 years and don’t feel it impacted my life substantially except during the time when CH affected the good ear. If that ear had gone, I would definitely have had a CI.
     
  5. david2salsero

    david2salsero Member

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    Curious to know what you decided on CI?
     
  6. No thanks

    No thanks Member

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    I have not decided to move forward on it yet. I’m still considering it, but it’s a big step right now. I think if my good ear was compromised, I would be more likely to take the plunge, but I’m reluctant to do so at this time. We’ll see.
     
    • Like Like x 1
  7. Bulldogs

    Bulldogs Well-Known Member

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    Thanks for the update….You will know if and when it’s right for you.
    God Bless
     
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  8. Brian

    Brian Member

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    Not to be rude, but I don’t understand why anyone Would get a CI. It sounds like you’re listening to R2D2. My friends that got them regretted it. I hope I am never in that position.
     
  9. david2salsero

    david2salsero Member

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    I think it varies like most treatments. Clinical studies show major improvements all around. Of course, in any study there will be those who don’t respond at all.
     
  10. Kevinb003

    Kevinb003 Active Member

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    I got mine to hear again out of a deaf ear. Kind of a no-brained there. Unfortunately, people are in that position and CIs help a great deal of them. As the previous poster replied, everyone’s experience is different. It’s definitely not instant gratification and it does require a lot of work and patience to train your brain to the new way of hearing.
     
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  11. No thanks

    No thanks Member

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    Kevin,
    What was the status of your good ear when you decided to get the CI for your deaf ear? Was that a consideration with your decision? Could you be more specific in regards to your experience with your CI?

    The fact that the hearing of my good ear is very good is probably what is holding me back from getting the CI. If I had marginal or poor hearing in the good ear, I would probably be more likely to take the plunge.

    On the other hand, I am of the understanding that one would have a better result with a CI sooner rather than later in regards to time elapsed since loss of hearing due to lack of stimulation to that part of the brain. (Use it or loose it.) Nevertheless, I am reluctant to volunteer for this nonessential surgery. I probably wouldn't hesitate if my other ear was compromised as well.
     
  12. No thanks

    No thanks Member

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    Hi Brian,
    Thanks for posting your thoughts on this. I guess one would get a CI if they needed to hear. If I had two bad ears and couldn't hear well, I would be much more willing to get one. As it is, my bad ear does not respond well to a hearing aid. I am able to rely on my good ear and hear well enough under many circumstances. A major reason that I am considering it now is for the likelihood of a better outcome being that the hearing loss occurred only about 5 years ago.

    Could you be more specific in why your friends regretted getting a CI? Also, what was the status of their other ear when they got it? It could be that the perception of distorted sound quality is a factor of how much hearing was available without the CI, or, in other words - how reliant they were on the CI in order to hear anything.

    Again, thanks for your thoughts on this. When I posted this question, I really was looking to hear different perspectives.
     
    • Agree Agree x 1
  13. david2salsero

    david2salsero Member

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    Update here: given my hearing has not come back after a series of injections and therapies, this may be the new normal for me on my bad ear. As I speak I’m in the doc office after my 5th injection and then one more next week. After that we’ll wIt a few months and see if anything improves. If not, we discussed CI. My oto says studies show CI better when done earlier in age. At 40s may have better outcomes. Well let you know. They will let me talk to other MM patients who got CI for SSD. Will let you all know what I find out. It’s a journey
     
  14. Kevinb003

    Kevinb003 Active Member

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    I could not communicate with my wife when the decision was made. We were on the phone with my oto and were writing messages back and forth on a tablet so I could participate in the conversation. Hearing in “good ear” came back after that, but as you know this disease, everything is variable.

    Right now I am struggling again with the “good ear”. I’m also not there yet with the CI mostly because it is a LOT of work to practice with. It is very easy to ignore training when the hearing in the other ear is decent. It also gets in the way of work because of challenges with video and audio meetings. I am confident I will get there, it is just taking a long time. Basically I stream music and audio books to my CI via Bluetooth on the phone. It’s supposed to be better since no external noises are picked up that way. I can understand words and phrases, but I couldn’t summarize any books if I had to. Music is good because my playlists are all songs I knew before all this happened and I’m a musician so my brain fills in what the CI misses.

    I had my CI implanted 6 years after my laby, which is when my “good ear” started to fail. Hope this helps.
     
  15. No thanks

    No thanks Member

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    Thanks for the update… I remember being there. My hearing didn’t improve; hopefully you’ll have a better result. Best of luck with the journey and please keep us updated.
     
  16. No thanks

    No thanks Member

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    Thanks for sharing your experience! Menieres is rough! Wishing you the best and hope that your “good ear” can hang in there for you.
     
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  17. david2salsero

    david2salsero Member

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    I’ve subscribed to a forum that is dedicated to CI.Connect with hearing implant users from around the world

    May be of interest to you. Also read the clinical study on CI for SSD and the benefits are significant though N score small. Still, now it is FDA approved meaning insurance will cover it. Like I said, my OTO says better success if you do it earlier so you can train your brain. Age has a huge impact on good outcomes it seems.
     
  18. david2salsero

    david2salsero Member

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    I should add. I understand your hesitation for getting CI since your good ear is functional. My issue now is that I can’t hear with ambient noise. Locating sound is possible, but that too Amy go away. It simply makes my life harder to manage when I have to spend a lot of brain power trying to resolve hearing. If I’m in a quiet environment life is good. But I’m an athlete, my job involves lots of communication in group settings at time, so having two functional ears is important I think. Dis will take time. It took me 18+ months to recover from a bike crash resulting in broken ribs and collarbone. The training to get back is always hard. I expect with a CI the training will also be hard and frustrating it eventually the outcomes are all worth the effort. Let’s see how it goes.
     
  19. No thanks

    No thanks Member

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    I totally get that! My hearing ability is very similar to yours, only sound location is very difficult or impossible for me. I’ll be interested to hear your journey in this regard.
     
  20. redwing1951

    redwing1951 Well-Known Member

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    My good ear is still good so like you my only issue is sound location. It drives me crazy at times. I sometimes have to turn my head back and forth a couple of times before I realize where the sound is coming from. My poor husband gets to answer daily my questions “where is that coming from”.

    MyOTO also stated better to have the CI while your good ear is still good. He added however the technology for CI improves every day so holding off for a bit is not a bad thing. I keep monitoring my good ear and if it starts to go south I will be a candidate for the CI.
     
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