Thursday, July 31, 2008

Discriminating Orchestral Instruments with new CI

I have 12 years of classical music training; I spent 6 years in orchestras in HS and college. So...what can I hear now, with 2 CI's? I went on to an orchestra listening site ( to test what I could hear--what I could discriminate (just for fun).

The site gives you pictures of 4-5 instruments, and a sound clip about 2-3 seconds long. You click on the instrument you hear. WELL, I got 11 out of 14 correct--with just my new ear!!! Three weeks post activation!!! WOOHOO!!!!!

I'm a happy camper. :D :D


Saturday, July 19, 2008

Quote Of The Day

I frequently tell people to wait to tell me something, since "I can't listen and drive at the same time." So this tagline on a CI forum made me laugh out loud:

---- Friends Don't Let Friends Lip Read And Drive ----


Friday, July 18, 2008

Exercises For Dizziness

One more thing from my appointment with the audiologist today. I told her I am still having a hard time with my balance and being dizzy when I move my head around. She showed me some exercises to do. It's better to make the brain practice making the compensations. But it's also important to be well anchored so I don't fall over while doing the exercises. She warned me that I would feel more dizzy for a while before I feel less. That's good to know.

I am to sit where I feel securely balanced and will feel safe when unbalanced, like in an armchair hanging on to the arms, with my feet firmly planted on the floor. Then I turn my head quick to the left, back to center; to the right, back to center. Woo--glad I'm securely planted in my chair! Then I look up, back to center; look down, back to center. More woozy reaction. But this is what I do to improve. Then I can advance to doing the side to side with just my eyes, to give my brain practice adjusting my gaze back and forth. Even that makes me dizzy, too! But that's the point of the exercises. Hopefully I will feel progress soon.

The even more advanced step is doing all of the above while standing--with my hands securely anchored on a counter or the couch or whatever. I'm not there yet. But it's good to know that practice will help rather than just make me feel crummy. I wasn't sure. I'm glad to know what to do to help myself feel better.

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Second Bilateral Mapping

I went to see the audiologist again today. I had a few things on a list for her:
- to make sure she knew about my blog here
- to give her the bottle of dark blue nail polish I bought to mark my new processor (she told me that traditionally, the right ear is coded red. So if I marked my new processor, for the right ear, with blue nail polish, I'd be messing with audiologists' brains. So I chose to mark my OLD processor, for my left ear, with the blue nail polish. And I won't be marking much else with it, so I gave it to her. I figured she'd get more use out of it!)
- to ask when I can color my hair again. She said four weeks after surgery. (My grey roots are going to be really wicked by then...)

Then we got down to business. I have gone from the initial program 1 up to program 2, which just had a bit more volume. That is good; it means my brain is adjusting to the stimulation and needing more.

The goal for the first mapping was just to get things going, get the brain stimulated by the electrode array, and give it a chance to get used to that. With this second mapping, we moved on to balancing the sound. We started with the lowest frequency electrode. Is it a comfortable volume? Compare it to the next electrode. Is the volume the same? And so on, through all 16 electrodes. The lower ones sounded pretty much the same volume, but when we got into the higher frequencies, I started needing more. That's where my nerve hasn't been stimulated much in the past few years. Intriguing how the brain gets itself back into old abilities!

Another cool thing was that, at the lower frequencies, I could tell some difference in pitch, or at least in tone. So that means I'm slowly moving past monotone. This is good.

After we went through all the electrodes, she switched the processor back on with all the electrodes. "How does this sound now?" "You sound more like yourself." She smiled broadly. "I was hoping you'd say something like that!"

She fiddled with some more things and had me compare program one and program two, like at the optometrist: which one is clearer? We went through several choices. I'm not sure what she was adjusting. She told me I didn't have to be able to say why one was better than the other, just whether it seemed clearer. That helped--I tend to be so analytical, I want to describe how it's different. So I could relax and just try to sense which was better and let go of why.

She told me one more choice: which is clearer? I chose, and she said, "Well, that's interesting." I had chosen the program from the first mapping instead of the one where we'd just gone through and balanced all the electrodes. Oh. Hm. We decided that we would override that opinion and give me the new balanced electrode program, because that is the direction we want to progress...and I didn't have a strong opinion which one was better than the other.

That is very different from last time, where I felt like I made progress by leaps and bounds each of the first several mapping appointments. It's not discouraging as such, because I can tell I am hearing better. This evening, I was talking with Joe and the battery died on the new processor. I told him to hang on while I changed the battery--then realized how much better I could understand his speech with the both processors than with just the old one. Perhaps that is a "bilateral wow" moment that I've been looking for. :) There will be more.

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Thursday, July 17, 2008

Grocery Shopping: Now THAT Is Exciting!

I just went to the grocery store for the first time since surgery 2 weeks ago. Freeeeedom! I walked slowly and hung on to the cart so I didn't have to worry about balance. I filled my cart with things I've been missing. I got to the check out and remembered: I'm not supposed to lift! OOOPS. I could get things in (and out) of the cart one at a time...but to the car? And into my house? Tactical error...or at least challenge. I had the bagger get my bags in my car. That part was easy. Fortunately my son was home and could carry everything in for me. It's 90 degrees here, so I was a little worried about my perishables. I was so glad David was home!

And now I have to listen to my body and go take a NAP!

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Wednesday, July 16, 2008

Listening Gym

I went on the Advanced Bionics "Listening Gym" site where they have listening activities to build skills with a new implant. Last night I just took the placement test to see where I am in their skill levels. This was with just the new implant. Five days after activation, and I scored 80%! WooHoo!! I am delighted with how well this new implant is doing, so quickly.

It's a fun site, so I'm looking forward to doing more practice.

And my appetite seems to finally be getting back up to normal. I had a craving for a steak quesadilla, so I picked one up at Baja Fresh. It tasted GREAT.


Monday, July 14, 2008

Feels Not Quite Fair...

I have been doing very well, but I stood up funny from bed around midnight last night and got clobbered with vertigo again. ARgh! And 12 hours later I'm still feeling woozy. Oh well. I guess this is just part of the program, little surprises in the common course of recovery from surgery. But it still feels not quite fair. Sigh.

I've already heard from another CI friend to keep sleeping with my head up. I thought I was done with that; last night was the first night I went back to just one pillow. A bit premature, I guess. AND I learned a lesson about taking the rest I need! I got home from a quiet visit to a friend and let myself get sucked onto the computer instead of taking a nap. I ended up canceling the various things I had planned for today, which is the wiser choice, and have slept a lot again. Learning to listen to my body more carefully...


Sunday, July 13, 2008

Day Two Activation #2

My first bilateral Sunday service was kind of a non-event. It was definitely better than with my hearing aid, but it was not yet better than using an iPod earbud in my right ear with the FM system at church. Familiar things were pretty clear. Words to unfamiliar songs were just as challenging, ok enough with lipreading the musicians.

Several people asked how things are going. I told them the implantation was successful, activation was successful, and I made it through the wicked vertigo after surgery. I also said the main thing I'm grateful for is the lifting of the heavy mantle of anxiety I've had since I found out my second ear had crashed and qualified for the second implant. Now it's done, it's working, my brain is learning how to hear with it, and I can get on with my life. This is good.


Saturday, July 12, 2008

Day One After Activation #2

Fun soft sounds today (I put on just the new CI while getting dressed and driving to get the new magnet spot shaved):
- moisturizer pump squeak
- blush brush - quiet swish swish
- wiping my shoes on the mat when I came back inside with my dog from wet grass
- garage door motor - kind of metallic, kind of "real"
- back up beep in Prius - not just "fffft" - some higher beep tonality
- click of turning on the headlights - sounded jsut right
- click of turn signal - sounded just right
**quiet sigh of satisfaction** - sounded very just right. :)


Friday, July 11, 2008

Finally I Can Breathe Again

I feel like I've turned some major corner, like there is suddenly light at the end of some tunnel I didn't realize I was in, like some huge weight has been lifted from my shoulders. It's so striking I had to stop and ponder it...

I think I've been subconsciously "holding my breath" ever since February 13, when I found out I needed this second CI. It was such devastating news. I really thought it would take 5-10 years, not just 2, before the hearing in my second ear would fall badly enough to qualify for a second implant. I have been on pins and needles, under a dark cloud, holding my breath for five months, waiting to see if this 2nd CI would work. Every time I couldn't hear something, over the past five months, I would catch my breath--will this 2nd CI work? Or will it be worse, being stone deaf when the processor is off?

I will admit that I wore my processor to bed the first night after surgery. I wasn't willing to give up sound. I think I took it off around 4AM, but set it on the nightstand, with the battery just disconnected, so I could whip it back onto my head in an instant. The second night I took it off a bit earlier (maybe 2AM instead....) but by the third night, I was ready to take it off when I climbed into bed. But I still put it on the nightstand. And it was the first thing I put on in the morning (before, I would wait until after my shower to put it on). I think it was maybe 5 or 6 nights before I put the processor into the desiccator (what we CI folks fondly call "putting our ears to bed").

I couldn't get my incision wet for five days after surgery--which means I couldn't wash my hair. O.o So I was eagerly anticipating getting into the shower on the fifth day. I took off my processor and the world was silent. I climbed into the shower, and it was really weird to have the water running over my face and not be able to hear the shower. BUT! And this is a very important but! It was not frightening. That is a huge difference. It was weird, it was odd, it was strange. But it was not freaky, scary, or terrifying.

When I got home from activation today, after Joe dropped me off and went back to work, I just sat and crocheted. I needed to rest my brain. I put on a favorite CD that I can enjoy with my other ear--Brandenburg Concertos--and just quietly sat. I didn't think about how the CD sounded, I didn't have to think hard about my crocheting. Then I began to think about making dinner (which I haven't done much of since my surgery). I realized I had energy! I picked out four cookbooks and looked up recipes for ingredients I have in the house. I picked out what to make for dinner. I set the table pretty. I had a bounce in my step!

I feel like I've lost a hundred pounds. I don't have to be scared, holding my breath, worrying about this surgery and activation any more. It's here, it's done, and it's well on its way to working--to working very well, no less.

After dinner, I took off the old processor and had Joe talk to me. I parroted back whatever he said, odd quirky humor and all. He said it was painful to have to listen to his own humor! :P But I was getting it right. And when I understood something and made a comment, Joe would parrot it back to me. And we ended up giggling and laughing--oh, my, this feels so good. I am so very grateful to have this off my back.

Now the cloud that is settling is one of peace and light. This is good.


Activation Day--Oh My!

WooHoo!! Speech comprehension out of the gate again!

The activation was very different from last time. This time, she turned on all the electrodes at once, at zero level then slowly increased them all together until I had the first perception of sound. After marking that, she increased the (blanket) level until I could begin to really hear her voice to a "comfortable" level. And I could understand her words immediately! I tried so hard to steel myself just incase I couldn't, but I have to admit I really was "expecting" to be able to understand. It was a HUGE relief when I could!! I didn't realize how much of a relief until she said something like, "Ok, are you feeling relieved now? You can start breathing again."

Then she gave me a few phonemes: ahhh, oooo, eeee, shhh, ssss, mmmm. I could hear each sound, although they really sounded pretty much the same. As we went through them again, I could tell they sounded at least minutely different. Then I was able to identify them correctly when she gave them to me one at at time--about half to 3/4 on the first try--five minutes after activation! WooHoo!!!!!!!!! Amazing. Totally Amazing.

The comfortable level kept increasing over the course of this initial mapping, as is expected. Oh, and at the beginning, after the computer recognized that the external part was indeed talking to the internal part, she said, "First we have to blow the crud off the electrodes." Joe called that the technical language version. So she said, "we have to stimulate the electrodes to eliminate any air bubbles or anything else that may be trapped on them. You know...blow the crud off."

Then she asked if I was ready to go bilateral. Oh, my--already?? Yup. So I put the first CI on, then she started talking and turned on the second, watching my face the whole time. It was sort of a non-event. So she said, sometimes the bilateral wow moment is when we turn off the second one and you go back to just one. It took a few times turning the second one off and on before I could put words to the difference, and that mostly after we balanced the two sides to her voice sounded centered in my head. Over time, that has become the cool part--having sound be centered in my head, not way off to one side.

The sound is still metallic and mostly monotone. Already (a couple of hours later) it's a bit less monotone. What surprised me was she told me to wear the two together all the time, with only about an hour a day of focused work with just the new one. I had expected to have to wear just the new one MOST of the time for about three months. She said, no, it will catch up just fine this way. She said something about this having been my better ear and also that it is my second implant. So that's what I'm doing!

On the drive home, I noticed that I could hear Joe better, even with him on my old CI side. I also noticed I could hear it when I drummed my fingers on the armrest--I would never have heard that so clearly before.

So now I have to get used to having another magnet on my head--I keep knocking it off. Heh. Time to stop at the hairdresser and have her shave the new magnet spot. And probably it would be good to use some of my toupee tape on the new magnet as well, especially until I get used to it being there.

I'm off to do some fun hearing stuff--don't know quite what yet, but I'll let you know!
Signing off for now,
The Latest Bilateral Bionic Babe! :D


Thoughts Activation Day Morning

I realized last Wednesday morning (the day before my surgery), as I drove up to the regular Wednesday noon Eucharist and prayer service, that I was no longer scared. I wasn't even nervous. I just felt happily, quietly at peace. It was a wonderful feeling. The outlook of going deaf hadn't changed--it was my heart and mind that had changed. I had done my work of grieving and of acknowledging my fear, and I was ready for my surgery. It was a very satisfying feeling.

Morning of the surgery, i was so happy! I couldn't stop smiling. I pulled the same trick, telling everyone, "I'm a preschool teacher. You have to let me take your picture for show and tell." One person said, "Well, if it's for little kids, that's ok. I just don't want my picture ending up on YouTube!"

Last night was my first time to join a live chat on -- my CI manufacturer's peer support website. It was fun. Trading stories about waiting for activation, talking about who's going bilateral, who's going for a mapping in someone else's city and can they meet up for coffee at the airport. They really know each other, and I know many of them from reading their blogs.

Now it is time to go downtown for MY activation. The doctor will remove the staples first. I think there's only maybe five of them? The incision seems to be about 2/3 the size of the last one, and I was told it was small! I have my camera in my bag, and I have my black/blue/green/yellow eye covered with a few layers of makeup! (I have to be a little vain since people want me to post this on YouTube...!) So off we go!

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Tuesday, July 08, 2008

Day Five Post-Op

I'm still really tired. I am walking without holding on to the wall every step, but I sometimes suddenly figure out I'm not quite perpendicular to the floor and kind of lurch back into balance. My stomach has calmed down a LOT but not quite all the way. And I'm still sleeping several hours during the day. I am a bit impatient to get my energy back. I don't remember being this tired last time. So I'm having to talk myself out of feeling guilty for needing the rest--fortunately Joe totally echoes the positive message that I don't have to be doing anything, rest is what I need. He also understands the need to get OUT of these four we just went to Baskin Robbins for ice cream. What a guy! :D

For now, the big excitement is I get to go take a shower and WASH MY HAIR! Funny what becomes worthy of celebration. :)

Friday is when I get my staples out then go to the audiologist's office for the magical moment of actually activating the implant. I hope I have enough energy by then to be excited about it...

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Sunday, July 06, 2008

Day 3: Real Food!

I went through and read my blog from when I had my first CI surgery (March 2006). That brought back a lot of memories and gave me a good perspective on how I'm doing this time: just fine. Things are different this time, yes, but not really better or worse in the larger scheme of things. For that I am very grateful.

Today I rested instead of going to church in the morning. That still seems a good call. I took off the Scopolamine patch (pre-surgical anti-nausea treatment) since my dizziness and vertigo seem to be abating somewhat. I saw a list of possible side effects on the sheet they sent home with me: agitation (no), blurred vision (I haven't been wearing my glasses, so, yeah, everything is blurry), dizziness/drowsiness (check), hallucinations (no--thankfully!), skin rash/itching (no) nausea/vomiting (I thought that was what it was supposed to prevent?!?), headache (somewhat), and dry mouth (very much so). So I'm glad to have that off, too.

I've been able to move up to more substantial food, including hard boiled eggs, Fiber One granola bars, a bowl of pudding, and a piece of toast (in addition to the ginger ale, saltines, and canned chicken noodle soup).

So tonight Joe and I decided I needed to get out of the house. I was looking forward to riding around in his convertible! But I was getting dizzy again, so we just went straight to a little restaurant. I saw they offered soup to accompany the entree, so I asked if I could just order the soup--it was chicken noodle! But this was fresh, not canned, with nice big chunks of chicken. I also ordered a baked potato. It all felt good to eat and I feel very nicely satisfied.

That also used up the rest of my energy for the day. I've only used 3 of the Vicodin pills and today switched to just using Tylenol. I don't like the druggy feeling the Vicodin gives me, so it's wonderful to be done with that.

Five more days to getting the staples out and (very likely) getting activated! Last time, we had a backup appointment just in case the incision hadn't healed enough or the swelling gone down enough to get the magnet to stick to my head. We shall see.

And maybe tomorrow I can take the bandaging off! Yay!

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Saturday, July 05, 2008

Day Two Post-Op

Things seem to be settling down at least a bit with the vertigo. I still sit up very carefully and stand up holding on to something, but that seems to avert most of the room spinning feeling. I've had vertigo before, but this has got to be the worst I've ever had it. Another good thing is that my appetite is beginning to hold, so I'm getting some chicken broth and saltines into my system. That will help get my energy back on track, too.

I woke up this morning with a big black eye, like when my little friend got her first implant at age 2 and came to Sunday School that next Sunday (she's now 10 and just got her bilateral implant in the past month!). This bruise is a doozy! It's swollen but it doesn't hurt at all.

I appreciate your prayers!
Love, Liz


Friday, July 04, 2008

Other First Day Things

I just realized some more things that are different with this surgery than with the first one.
- I'm more dizzy and nauseous this time.
- My ear is not as numb as last time (although Joe reports there's some lovely bruising around it).
- Things don't taste funny this time. Last time things tasted odd, like more metallic. This time, saltines taste like saltines, apple juice tastes like apple juice, and ginger ale tastes like ginger ale. This is good.
- I do however, have almost no saliva, so eating dry crackers has to be done carefully, with water or ginger ale or juice or chicken broth. (And chicken noodle soup tastes like chicken noodle soup!)


Woozy Day After Surgery, But Still Good

A couple hours after I got home last night I got hit with some pretty intense vertigo, and I've still got it today. From what I've read this is very normal. It's more a bother than a worry. It does, however, mean I'm struggling to find things that will stay down. My CI friends tell me post-operative nutrition is important, so I need to keep trying stuff.

I'm mostly just tired--no problem keeping myself laying down! (with an occasional jaunt to the computer, of course!)
Thanks for all your prayers.



Thursday, July 03, 2008

So Far, So Very, Very Good

I'm home from my cochlear implant surgery. The surgeon said everything went very well. And I feel great. We arrived at the hospital 8:30 and left at 4:30. Amazing. Everything went so much more easily this time. People who had their first implant surgery 5-10 years ago always say that, but I was surprised (and delighted) to find it true for just 27 months later.

He didn't give me the big pressure bandage, because he wanted me to be able to put on my first implant so I could converse with him and with the nurses during recovery. So I have very minimal bandaging. The nurse gave me the supplies if I decide I want it.

I think the biggest challenge this time around will be making myself take it easy. That's a wonderful problem to have.

I feel so very blest.
Thanks be to God!