Activation Appointment – May 4, 2009

Activation Appointment – May 4, 2009

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es, folks, don’t hate me, but I was activated yesterday, barely 5 days after surgery. It seems pretty common to activate that soon with the MedEl implants, but I’m not exactly sure what factors into the decision on how long to wait. After Don told me that the surgeon originally told him we could remove the bandage after the weekend I was debating all weekend about keeping the appointment Monday. What if they didn’t do anything except take the bandage off (which I could do myself?). It seemed too soon to do the activation and I didn’t want to drive 4 hours each way for nothing… Thankfully I got an email from the audiologist around 9 am saying to come, that they were really busy but would have time to activate me! Into the car we went, leaving a little before 10. We got there around 1:15 and had lunch at Chipotle arriving at the hospital at 2 on the dot. Then waiting and waiting and waiting. Is it just UNC or do a lot of families go to the ENT office together? After waiting in the waiting room for over an hour I was taken back to see the surgeon. He just slid the bandage up over my head. Don told me I had some tape or a bandaid behind my ear still. My ear itself doesn’t seem too numb, this is good because apparently that can last a long time. The area of my head behind my ear around the incision is definitely numb though. The surgeon was very curious about my residual hearing and got out a tuning fork which I couldn’t hear at all. I’d guess it was 1000 Hz – pretty high. The musician in me needs to ask more questions. ๐Ÿ™‚ I could hear it in my unimplanted ear ok though. He took me right off to find the audiologists and do a hearing test. Thankfully it seemed like they were just finishing up with the person before me, so the wait wasn’t long. The AuD student who works with the audiologist took me and tested my hearing. First the tympanogram – totally flat. I can tell it’s stuffed up and that confirmed it! It should subside in the next few weeks. Even with that much stuffiness (fluids or swelling or both) I could hear at, and I’m guessing as I didn’t have my glasses back yet (another story) 250 Hz at 70 and 500 Hz at 100 and maybe the 750 and 1000 were still there around 120 dB too but I’m not sure. The audiologist explained to Don that that meant I would be able to tell if something was crashing around me. I find it funny how little importance they give to the low sounds sometimes. ๐Ÿ™‚ She was curious and also tested the hearing in my unimplanted ear – she’s a researcher and very curious it seems – it was the same as before. We talked about cochlear implant research and how she’d love to include me as one of her guinea pigs. I said absolutely, might as well be useful to others if I’m driving that far for an adjustment. I do find it fascinating myself. If it didn’t mean tons more school I’d think about being a hearing researcher… funny how UNappealing that idea was 15 years ago. Oh well. That out of the way, I got a short demo of the CI processor itself and it was time to stick the magnet on my head and turn things on. The actual process is pretty simple – the computer screen has what looks like a sound equalizer / mixer board with 12 slides, one for each of the electrodes. I only have 10 electrodes so when we got to the last two there was no sound and we shut them off. (Only 10 as the surgeon wanted to save my low frequency hearing which is at the deepest part of the cochlea – so when he got 10 inserted he stopped and didn’t go any deeper). I was surprised that each pitch came in so clearly. Very distinct notes – like pressing down on a synthesizer key. They ranged from medium high to super super high. I haven’t heard anything that high in years. I was supposed to tell the audiologist the loudness on a scale of 1 to 10 with 8 being maximum tolerable, or something like that. I wasn’t really sure what max tolerable was and she was cautious about going up too high. There was no pain from the noise, no pressure, not like turning the volume up too high. It would be more like twitching inside your head or feeling dizzy I think. We didn’t go up that high yet. We did all 10 and then she said she was going to turn it on. She’d already made me turn off my hearing aid. Ever since then, the only way to describe things is like a Sci-Fi sound track. I wish I had watched more SciFi so I could tell you what things sound like exactly, because I know I have heard these sounds before… The rest of the next hour or so was spent lipreading Meg as she explained all the gear I was getting. I can’t believe that one tiny little processor (ok, two as they give you a backup one) needs a huge box with brief case. Everything is in it’s own little box. Batteries, cables, different covers for everything. The packaging is insane. Combined with lipreading I could understand the beeping coming from Meg as long as she was the only person talking and she kept it fairly slow. If Don commented something from across the room it became a mess of beeping and twittering, usually because he’d make Meg laugh. Without lipreading it was pretty much just beeping. Right after I was turned on the audiologist was there and she started reciting the days of the week while I lipread her and repeated them back. Really simple of course, kind of like lipreading lessons where you can’t hear anything, except I could hear her beeping like a robot or a synthesizer, a synthesizer set on robot voice I guess. After going through the days of the week a few dozen times she had me close my eyes and keep going. Yes, I could hear the difference between them. It was all beeping, but even with beeping Wednesday sounds different than Tuesday sounds different than Monday. They were super impressed, Don’s still going on about it. ๐Ÿ˜‰ No big deal to me, as my brain was just matching up beeping with familiar words, but I guess, a lot better than hearing nothing right? One thing I’m going to have to be careful about is being annoyed at people who think everything is fantastic or amazing or whatever. I try to explain what I’m hearing and how different everything is and they just say that must be awesome!! How wonderful!! I was not deaf before, people. I’ve heard sounds my whole life. If you heard sounds like I’m hearing now you would think you’d lost your mind. Seriously. But things are going well. I dreamed about a baby alien beeping in my head. It’s hard not to laugh at how funny things sound. Mostly I’m overwhelmed. Overwhelmed and totally fascinated at the same time. I’m finding Twitter a good place to post my thoughts – these blog posts tend to become a ramble after a while. ๐Ÿ™‚ <p><a href=”http://tweetpaste.thingamaweb.com/embed/21363/” mce_href=”http://tweetpaste.thingamaweb.com/embed/21363/” target=”_blank”>View sajego&rsquo;s tweet</a></p> <p>

7 Comments

  1. Mog
    May 5, 2009

    I have been so looking forward to reading your account of the activation, so thanks for posting so coherently.

    It is exciting though, first steps and all that. Do you feel disappointed in anyway, is it what you expected??

    Mogโ€™s last blog post: and now for something completely cheerful

    • Sara
      May 5, 2009

      Did it end up coherent? I didn’t proofread ๐Ÿ™‚

      I am surprised at how melodic everything sounds. I expected more mechanical sounds, more harsh sounds. Everything sounds like a pure synthesizer tone – or a bunch of them being pressed together randomly.

      Right now I’m surprised that music is easier to listen to than speech. It sounds totally bizarre but if it’s a song I have memorized (there are many of course) I can follow along with the words easily.

      Mostly at this point it’s hard to fathom that this will be normal soon… but I can tell it’s changing already – more chipmunks and less robots seems to be the trend.

      Not disappointed, but entirely overwhelmed. Don said that my own voice sounds ‘more deaf’ which I guess shows how little of my own voice I am hearing. He also said that I sounded like I do when I’m about to cry – and I’ve been crying since, so I guess that’s accurate. ๐Ÿ™‚

      Going to need a break soon… or maybe a movie that doesn’t make me cry anyway. ๐Ÿ™‚

  2. Meredith
    May 5, 2009

    May I recommend the new X-Men movie? It was pretty good. Only if you like X-Men, of course. ๐Ÿ™‚

    I demand pictures of your new head! And you MUST let me know when you are coming back up here, I want to sit down and have a chat with you about everything! You didn’t get the hybrid, I know that, but I still want to ask you things. ๐Ÿ™‚

  3. Nabeel
    May 5, 2009

    Wow, so soon! I’m nowhere near ready to get activated anytime soon, the swelling still needs to go down. Anyway, I heard from other people who got implanted that everything sounds high pitched and beeping, and then after a while, it sounds more natural.

    Nabeelโ€™s last blog post: Day 6 is a charm

  4. speakuplibrarian
    May 6, 2009

    Thank you for sharing what the first sounds sound like. I would think the beeping would be a bit disconcerting. You are doing great. Thanks again for sharing your recovery and progress.
    Take care, Sarah

    speakuplibrarianโ€™s last blog post: Is Surgery Worth the Risk?

  5. Adam Fitzgerald
    Apr 5, 2011

    I am scheduled for my CI surgery on June 2nd 2011. I will be getting a Med-El implant as well. I have some questions for you as far as your experiences with the opus 2. My email is adamfitzgerald@seacoast.org. if you have time, I would love to ask a few questions.

    Adam

  6. Ronda Roush
    Apr 15, 2011

    Sara, this blog has been so inspiring and helpful. I too am a musician, a professional pianist. I am still able to do my job, I use a headset and my own cool little monitor which I can tune everyone out except what I need. The hardest part of being a hearing impaired musician is hearing directions or verbal changes etc. Or having people call me to tell me rehearsal changes instead of emailing or texting! I will be having the hybrid CI surgery this next week. I have waited for 10 years for it to be invented and ready for me to be part of the study, so this is exciting, but your blog helps me to realize I probably won’t go wafting off on an auditory cloud of perfection. But I will be glad for any help I can get, just nervous about how music will sound and other things. Thanks for being willing to share what you have learned. Thanks, Ronda

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