The Good and the Bad – Will you share?

Hi everyone,

Today I have a request rather than an update.

I was wondering if anyone would like to share their frustrations with their implants and how they overcame them (or not). For early frustrations, I’ve encountered several people now who, at initial turn on, couldn’t hear the tones, felt only vibration, couldn’t hear anything except static… even three weeks later.  In all cases they were told that it’s normal, it takes time, it’s different for everyone, keep at it.

Then there’s the frustration of not being able to hear and understand speech or not being able to pick sounds out from other sounds, even after a lot of time.  There’s the frustration of things never sounding normal again and missing how things used to sound.  Getting an implant is a big decision for those of us who had hearing to give up.  It’s a hard thing to adapt to for anyone, deaf, or hard of hearing, or recently deafened.

Sometimes we only want to share the good news and sometimes even after things get better we still don’t share our difficult experiences with others.  But people going through their own rough time need reassurance more than anyone.  And those experiences are so much more reassuring to than the start pupil success stories are.

14 Comments

  1. Jenifer Benner
    May 24, 2009

    Hi, I try to post my up and downs with the CI. I didn’t have much problem with hearing things, but mine were that I had contacted staph infection on my 2nd CI and ran into ALOT of medical problems because of that. I try to post all the good and bad with the CI because I believce that’s the best thing you can do. Everything has good and bad things to each own things.

    Jenifer Benner’s last blog post: Today makes it Day #10

  2. Wendi
    May 24, 2009

    I feel like a Pollyanna here, but I think my situation was different because I had no residual hearing when I got my CIs. I was in total awe (and still am) over hearing anything at all, so I didn’t feel like there were any bad experiences with my CIs.

    I noticed swift, positive changes nearly every hour after I was activated. I was kind of amazed how quickly voices made sense. I was activated in the early afternoon and by dinnertime that night, I was understanding voices pretty well.

    With each mapping, things got better and sounded more like I remembered them. Once I settled into my current program, then I just started noticing more and more things I never knew even made sound (when I had hearing, and wore hearing aids).

    Now, I do notice a huge difference if I’m wearing just one of my CIs (when I’m changing batteries, for instance). Voices sound robotic again and it’s much harder to hear. Being bilateral makes a massive difference (for me) in sound clarity.

    I think the hardest thing for me to get used to, after I was first activated, was the sound of my own voice. It sounded so loud and so strange, I couldn’t stand it. I was tempted not to talk, or to whisper. I’m glad it didn’t stay that way for more than a couple of hours, LOL!!

    Wendi’s last blog post: Going to Court (with cochlear implants)

  3. Dan Connell
    May 24, 2009

    By far and away, the biggest frustration I have is that my lovely wife thinks I should now have perfect hearing. Sometimes, it’s all I can do not to read her the riot act.

    While my hearing us very good now, the main issue here is that she is not a native speaker of English and tends to mangle some words so badly that I really have to rack my brain to think of what would make sense in the context of other recent utterances. I’m getting better at decoding her accent, but it does try my patience, and it tries her’s too. However, she’s a bit more, um, emotional about the issue.

    I have found that I don’t want to turn on the CI until two or three hours after I wake up. My “quiet time” is first thing in the morning. I’ve received at least one comment on my blog that someone else has the same issues.

    I also agree with Wendi’s comment about one’s own voice. I’m still getting used to that. When I was young and could hear, I never really liked the sound of my voice on a recorder or video playback. I still don’t like it. However, being mute has advantages for me as “even a fool seems wise when he closes his mouth.” 🙂

    I don’t know if that saying applies to typing or commenting on blogs though 😉

    Dan Connell’s last blog post: (NL-0036) CI comes with an "off" switch

  4. Dennis Selznick
    May 24, 2009

    Frustrations. Hmm.

    Contrary to most people with CIs that I’ve talked to, I had a [b]very[/b] smooth transition from losing my residual hearing to more than making up for it with the CI.

    I can think of a few things offhand:

    1) The AB Clarion C-2 has the capacity to store 3 programs at once. My memory is hazy, but I vaguely recall the very first 3 programs I tried had the stimulus in the following order:
    a) Only 1 or a very small number of electrodes being turned on at the same time
    b) “Every other” electrode being turned on at the same time
    c) “Every electrode” firing simultaneously

    I’m almost positive I’m remembering it incorrectly. But anyway, with the first two programs, when I listened to human speech, EVERYONE sounded like Muppets. I kid you not, it was this annoyingly high, slightly metallic ting, helium assisted boost to everyone’s voice. Definitely Miss Piggy and Kermie time. The third program though – that was unbelievably normal. Or at least was normal enough that my brain adapted over a couple of weeks while using it as my main program and not even bothering with the first two. I would not have continued with the CI if everyone’s voices still sounded like Gonzo and the gang.

    There is still some expectation that I’m “hearing” with some of my family members – I do far better than I did pre-CI but I’m still unable to socialize with groups in loud settings. Rock concerts, loud dining places, sports arenas, etc. Too much crosstalk. However, even hearing people admit they are challenged in those situations, but it’s a testament to how well it works when you’re playing in the “big leagues” of hearing.

    Since I don’t wear a hearing aid with my CI, I have no directional sense – so that intermittent beeping noise that I have to track down is my arch-nemesis. Curse you, dying fire alarms!

  5. Joshalyn
    May 26, 2009

    Our son is only 2 and hearing for 7 months, so I can’t really contribute about what he heard on activation. However, I will tell you that he absolutely LOVES his CI! He wants them on first thing every morning and he lets us know if a magnet falls off and he can’t get it back on.
    Here are the only two real issues we have with CIs:
    1) He HATES road noise. As much as he loves to hear, he will jerk them off within 10 minutes in the car and he will NOT let anyone put them back on. It must be very bothersome.
    2) Water. Bathtime. Swimming. Sand-and-Water table play. Water parks. Water slides. Sprinklers. Anything that normal 2 year olds like to do with water becomes an issue for William. He loves water. He also loves to hear. Obviously he wants to do both at the same time and can’t understand why that can’t happen. We’re working on some options. I hope we don’t ruin his processors!

    Joshalyn’s last blog post: William’s Day at the Nature Park

  6. Nabeel
    May 26, 2009

    I’m already dealing with high expectations from other people and I haven’t even been turned on yet! For that reason, I agree it’s important to be honest when telling about our experiences with the CI and know that it will take time. I’ve encountered plenty of people who hated their CI at first but kept at it, and now they love it. Even a year later.

    It seems that we mostly hear about the good stuff and all these success stories, and I had to comb the internet for the bad experiences or failures. I have minimal expectations for myself, but I could not help but hope for the best. My activation looms next Monday…

    Nabeel’s last blog post: Attitude is Everything

  7. Michelle
    May 26, 2009

    I know for the first month I was more focused on getting through a day with a CI than I was on thriving during a day wearing it. By the 4th mapping though I hit a point where I could live with where I was and look forward to what would happen next because I was finally having some success. That wasn’t the case in the beginning, and I had so many doubts that first month of activation about whether I’d made a mistake or not.

    The two hardest things for me now is living up to my own expectations. They are incredibly high and I expect to succeed. I get frustrated if my progress seems to slow down for a few days. I get frustrated within a couple weeks after the previous mapping because I know I want to get the show on the road. I’m also anxious to understand more speech. I’ve had a couple of phone calls, but they are a struggle and I want to get it NOW. LOL! Also, when I compare myself to adults deafened late in life who can make the adjustment in the hearing world more easily, I get flustered. (Isn’t Dan fabulous??? 😀 )

    The other thing that gets to me right now is that I’m hearing so much static from various electrical sources and it is irritating and a lesson in tolerance.

    On the whole this has been a great adventure. When else in life are we physically going to get better and better as we age??? Time is our friend… Fabulousness! 😉

    I can’t wait to see what you are hearing next month at this time!

    Michelle’s last blog post: Mapping #5 and Updates Courtesy of the Truly Fab Facebook Status

  8. Earplugs
    May 26, 2009

    I’m cheating here because I’m not a CI user, but I’ve experienced similar things with hearing aids. One brand of hearing aids I tested out, I could hear crickets chirping, which was amazing because I’d never heard them before. However, I couldn’t hear my keyboard clacking or the sound of my feet on the steps, which was odd considering I could hear such things before. My hearing aid vendor told me other people had different responses to the hearing aid.

    I think because people’s brains are wired differently for sound, that ends up in a unique adaptation experience, be it a CI or hearing aid. The unique adaptations your brain undertook to respond to your hearing loss and the hearing aid may result in a one-of-a-kind CI experience. Your brain is now taking the old wiring and re-wiring them to adapt to the new sound.

    I think it’s really cool reading about the pattern your brain is taking — high-pitched sounds are emerging first. I’d be interested in reading how things progress for your brain’s adaptation to the CI.

    Earplugs’s last blog post: Who’s on First?

  9. Lauren
    May 26, 2009

    I had hearing aids my whole life….20 years before recieving my first CI. My expectations going into activation of my first CI were extremely high. I thought that because I had so much success with hearing aids, that my CI would be an instant success as well. I was wrong…when my first CI was initially activated, I HATED it. I became very upset and wanted to take it off and throw it out the window. However, having some experience with CIs through being a teacher of the deaf….I knew that it gets better. Intially my first CI sounded like Darth Vader, however within a couple of hours I was starting to make sense of speech. However, I did have this really annoying static type sound for the first three weeks after activation while my brain was figuring out all of the sounds I was hearing.

    The first CI eventually, with time and therapy was great for listening….so I decided to go for the second CI. When it was activated…I lost it….it was even worse than the first CI activation. Again….patience is a virtue I don’t have a lot of when it comes to my hearing. With time and adjustments it got better. Like someone else stated….with both CIs, everything sounds phenomenal….however if I just have one CI on, then they revert to their independent voices (Darth Vader and the chipmunks). I love both of my CIs (as you know) and I am extremely grateful to have them and to be able to hear.

    I will say that the new ear has been more difficult. Before CI surgery, I relied on my left ear (New) for the telephone. Since the CI…I don’t understand what I hear on the phone as well because the pitch is higher. It has been a major adjustment for me trying to depend on the ear that I did not use on the phone for 15+ years and having to use it. Now I am fine, but I still miss using my phone ear (left ear) for the telephone.

  10. Donna Penman
    May 27, 2009

    Hi I am a bilateral cochlear implant wearer. I had my first implant in April of 2000.
    All was not smooth sailing and they had to turn most of the electrodes off and just very, very gradually add them on. I couldn’t tolerate the sound any other way. It took me much longer than was expected but I got there and was able to get back into life. Then last year I had my second side implanted. I have not achieved all that I thought and hoped, at least not yet. I wanted the second side implanted in hopes that I would be able to do better in noise and also more importantly know where sound was coming from. I still am not able to determine where the sound is unless it is right in front of me. I have not given up though. I still don’t regret getting the second one as it does help me to hear better than I did with just one.
    My advice to anyone is 1. find the best audiologist you possibly can. 2. give yourself time and remember those horrible sounds can be changed into better sounds but it doesn’t always happen immediately…running water, flushing toilet, newspaper pages being turned, oh how I would cringe….now I don’t even think about them, so be patient with yourself.
    Enjoy.

  11. Robyn Carter
    Jun 6, 2009

    Plenty of frustrations – which you will find on my blog. Smooth sailing for 15 years then failed. Reimplanted – then failed.

    Now I am switched on again and am doing well, but the sound still sounds a bit ‘flat’ and I get frustrated with that. I know it will get better over time, but I’m impatient! I want what I had before.

    You can read my blog on http://www.robyncarter.blogspot.com Head down to the tags section at bottom right and click on ‘cochlear implant’ for the list of entries on that.

    Cheers
    Robyn

    Robyn Carter’s last blog post: VIP for an Afternoon

  12. Nabeel
    Jun 8, 2009

    Just wrote up a blog entry about the good, bad, and ugly about using CI. Check it out 🙂

    Nabeel’s last blog post: The Good, Bad, and Ugly – Week 1

  13. Kate
    Jul 28, 2009

    I also wrote up a blog post about the Good the Bad and the Ugly – but this was BEFORE I had read anything about this – I can’t believe what a coincidence it is that you guys both wrote about this.

    Ah, well , check mine out, and its only 1 week after switch on! Lots of bad! HAHA

  14. Seth
    Feb 15, 2011

    Hello, I realize this is a bit late to the topic.

    I was activated just over 2 weeks ago. I feel like I’ve made a whole lot of progress the first week. The second week seems much the same which is rather fustrating. I’m doing sound exercises daily and seem to do much better with CI only rather than CI + unaided ear or bimodal.

    Here is my good, bad and ugly thus far:

    Good:
    I love hearing little things I didn’t before such as my thermostat clicking, my IM peeping, the sound of socks on carpet, the sound of hot air hitting cold air in the freezer (this one took me awhile to figure out and a bunch of facebook comments lol). I like hearing myself whistle. I seem to be able to detect everything that makes sound.

    Bad:
    I still can’t understand words in bimodal and by itself it sounds rather musical or underwater. I seem to do great on Sound and Way Beyond, scoring 100% on closed word tests, 80%+ on lvl 4 and 5 of vowels and consonent reconition but still speech speech escapes me.

    Ugly:
    Fans and other consistent sounds don’t sound consistent. They sound more like multiple pure tones trying to sync but not suceeding. Thus I get this high-pitched warbel that just drives me mad.

    I just started my blog and got it up to date from previous notes I’ve had elsewhere if you guys want to check it out. sethjdavis.wordpress.com

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