The 40-Something Implantee: Part 3

I’m grumpy.

I haven’t really heard in three days, since I have been activated. That means I have been relying entirely on lipreading this whole time. Which further means I am exhausted and therefore, irritable. Can’t blame mid-life hormones on this one.

Let me take that back. I haven’t “heard” in the usual way, with my trusty ol’ hearing aids. I am definitely hearing something with my implant. Although, I don’t quite trust that I am hearing– it’s all sensations right now, and more of a certain kind of feeling that I am having. Whether that means I am hearing something remains to be seen.

So, this past Wednesday, Ed, my husband, and I went for my 9 a.m. appointment with Nancy, the audiologist. Marybeth, the audiologist from Med-el who covers the NW region, was there as well, which was nice because that meant she could help Nancy troubleshoot the programming.

The first thing Nancy did was check the internal device. She put a coil/magnet on my head– this was attached to a wire which was plugged into to the computer. That was the first time I felt the sensation of a magnet on my head. It went on very smoothly, and it was a little cold at first, but I can’t really describe the sensation- except for “weird”. After a while, I forgot it was there.

So I just sat there while she typed on the computer, weaved some magic, and said that everything looked great. Basically, she went through each electrode (the Med-el electrode array has 12), and made sure it was functional. “There’s nothing broken in there,” she said with a smile. Well, that’s good.

Now it was time to turn on each electrode! Nancy took the testing magnet off of me and put on the fancy Rondo, the new Med-el product that has an all-in-one magnet and processor! It felt fine, but after a while my head started to feel a little tender– I am still healing in that area (I later switched to the regular behind the ear processor).

The Rondo

The Rondo

She put a sheet in front of me, which is going to become very valuable in my relationship with her: it is a way for me to communicate to her how soft or loud the sensation or sound is.

SoftLoud

I’m not sure if you can see it in the picture, but at the bottom is off (0), then just noticeable (1), very soft (2), etc. And at the top it is too loud (10).

So I am waiting for something to happen and Nancy keeps looking at me, and I’m thinking, what, do I have a booger hanging out or something?

Then I feel it. It is almost impossible to describe. It was coming from the center of my head and it felt like some kind of bell was ringing.

“Is this it?” I ask. Nancy smiles and nods. She can tell something is happening.

It was very imperceptible at first, but then Nancy increased the volume and I started pointing to the sheet to where I felt I could perceive the sensation’s loudness. To me, it did not feel like a sound, not the sound I am used to, but rather, a feeling. Very strange. I was quite bewildered by it all. And later on, I would think to myself, “If this is what it’s going to be like, I am screwed.” But then I remember that many of my friends who have received implants thought this very same thing and then later say this was the best thing they ever did and they would never go back to using hearing aids.

Anyway, Nancy went through all 12 electrodes, turning them on and playing with the volume for each one.

Then she turned on the microphone on my processor, which meant that every single electrode was on at the same time! You would think it would be a blast of something horrendous, but it wasn’t really. Everyone in the room started talking to me. My head suddenly went sort of ring ring ring over and over again. Not the most pleasant of feelings. She tapped with her pencil on the desk but it was too soft for me to pick up anything. Basically, everything that made a sound, whether it be a voice, tapping, car, piano, etc. all gave me the same sensation. I could not distinguish between all those and even now, on Saturday, still can’t. However, I can tell that something is making a sound when my head goes “wheeee”- I just can’t make out the source of that sound.

Then Nancy went back through each electrode to make everything louder. Her goal was to get me to point to between 4 and 5 on the sheet  (comfortable but not too soft and comfortable but soft) for each electrode, because she did not want to overwhelm me at this first programming.

Then she turned the microphone on again and I could definitely “hear” or “feel” a little more. I excused myself to go to the bathroom and when I walked in the hallway, I could tell there was more sound out there. And after I flushed the toilet, my head went “wheeeee” with the sound of the flush.

Two hours later, after all this testing and programming, Nancy had made four programs for me, each one a bit louder than the other and told me to keep it at a manageable level and not to push myself. I started with the softest program when I walked out of there on Wednesday. Today, Saturday, I am on the fourth program, having maxed out on the other three (they are too soft now).

I was pretty wiped out and still am, from all this stimulation (I am only wearing my implant and not my hearing aid in the other ear) and trying to understand what everyone is saying. A few cool things:

  • I felt a low rumble in my head a couple days ago and could not figure out what it was. Looked around and saw an airplane in the sky!
  • Lying on my bed one evening, with the door closed to the bedroom, suddenly my head exploded with sensations. I quickly figured out it was my son knocking at the door!
  • One evening there were six people sitting around the dinner table. I tried to pick up any differences between each person’s voice. I could always tell when Ed, my husband, was talking, because his voice was the loudest and he was sitting the closest to me.
  • Whenever my son and daughter play the marimba or piano, my head goes wild with sensations! I am trying very hard to pick up the beat, but can’t do that just yet.
  • When I facetimed with my mom on the phone a few days ago, I could not make out that she was talking, ie. I couldn’t feel/hear any sensations. Today, in the loudest program, I had some sensations while she was talking to me.
  • Today, I had my daughter test me by saying one-syllable words or two-syllable words. I had to guess if it was a one or two syllable word she was saying. I can’t hear words, but I can sometimes tell if someone is speaking. I got every single one right! And then, she tricked me by saying a three-syllable word. I looked at her and said, “Was that three syllables??” and she gave me a broad smile with a nod.

My next appointment is this coming Wednesday. I have an appointment every week for the next month or so, then I think I will go a month between appointments.

Right now I am looking for auditory-verbal therapists to help me with listening exercises and practice and hope to line up friends to do some listening with me regularly.

Note: go to the Med-el website to learn how a cochlear implant works. Scroll down to the playlists and watch “How a cochlear implant works” under “Maestro”.

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7 Responses to The 40-Something Implantee: Part 3

  1. Nan Asher says:

    Pretty awesome Elizabeth!

  2. thehikermama says:

    That’s pretty astounding. I never thought about having to learn to understand what it is you are hearing/feeling. What a journey you are on!

  3. Inga Kristjansdottir says:

    Amazing! 🙂

  4. Robin says:

    Hello Elizabeth,

    Congratulations!! “Welcome to the other side.’ I am so glad to have found your blog — Katherine Cooley and I have been emailing, comparing notes about CI ‘hearing’ — and I was born profoundly deaf, am 48 now, speak and lipread, and was JUST activated with 2 MedEl’s on May 17th. Only 6 weeks ago… and all of your descriptions are exactly what I am experiencing at this early stage too. My blog address is http://www.silencetosoundblog.blogspot.com. I would love to stay in touch with you. This is a weird, strange, sometimes pretty frustrating process — and I am still feeling vibrations and hearing mostly beeps and squeaks (often for the tiniest sounds I’ve never heard before), and the hardest thing so far is probably that everything is soft and mushy and I just cannot hear VOICES yet so I am lipreading 100%. The one thing that keeps me going are my friends with similar hearing loss histories who started out with the same sensations and after a year to 5 years of patience/practice/time, now know without a doubt that they hear more than with any hearing aid and they LOVE their implants. I spent over a year looking for these particular people so I would know exactly what I was getting into.

    I know I will never be hearing, or learn as quickly or as much as a child or young adult would, but my goal is environmental sounds, the Ling sounds, and vowels and consonants to enhance my lipreading. Anything beyond this will be gravy. I only wore one hearing aid all my life, and my audiogram is worse than yours — so you already have more brain experience/stimulation than I did AND you have the advantage of the familiar hearing aid sound in your other ear — so I do think you will do well. I know some friends who much prefer wearing the CI and HA together, to coach each ear along and have stereo-sound, and only one other friend who went cold turkey to her one CI – so be sure to try both combinations and give yourself the best possible advantage. There is no right or wrong way to learn because this is such a unique brain thing and how we learn best is different for each of us.

    I will definitely be working with an auditory verbal specialist starting next month — it is a 9 hour round trip drive to Denver for my mappings and to meet the AVT, so I am also going longer between mappings, so I am glad you can see yours more frequently. My AVT is one of only a few in the whole country with her particular education and professional credentials and I really like her!!! Google Listen for Life Joanna Stith and email to ask her if she can recommend someone in your area. Also check the Listen Foundation and google Warren Estabrooks.

    I hope this information helps!! We can do this!

    Robin

  5. Loren says:

    Thank you Elizabeth. After reading this I am much more aware of all my senses. Our real wealth is in our life and bodies. What a miracle!

  6. Kirsten A. Gonzalez says:

    Hi, Elizabeth. Yes, welcome to the club. I characterized my first sensation of sound with the CI as “like a red laser beam moving along about a foot from the ceiling.” It takes a while for that ol’ auditory center, deprived from so much sensation for so long, to muster its forces and get all those cells working together to organize all that new stuff coming in, and then the rest of the brain figuring out its meaning! Amazing what the brain can do. It just gets better and better. I didn’t have access to therapy, but my good husband read words for a half hour to an hour just about every day (yes, 1-, 2-, 3-, 4-, 5 syllable) to me, then eventually two 1-syllable words and I tried to tell which one from my list, etc. etc. to more and more different words, finally to sentences. It was quite an adventure! Following along with Harry Potter on tape was fun, too (but a British accent, of course!). And finding out that carbonated water poured into a glass makes the sweetest, high, gentle sound (if you get close)! You’ll get there! Best wishes to you!! — Kirsten Gonzalez

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