2nd Mapping Session less than 24 hours after the 1st one! Tuesday, August 8, 2006

Today I went back to see Megan (less than 24 hours after I had my first mapping session!) to fix some things that were going on with my implant.

I told her about how I emotionally fell apart last night, right after we got home. Both Megan and Kim reassured me that it’s normal to react strongly, and that I’m not the only one who has fallen apart after getting activated. That, and I think the stress of everything since June (mom’s back surgery, my two surgeries, etc.) finally caught up with me. They also told me that other patients were unhappy from anywhere between 1 week to 6 months before they finally liked the way the implant sounded. I also talked about how I felt like I had a radio playing in my head after I took the implant off, and she thinks I may be hearing phantom noises.

They also said that I could come in tomorrow, Thursday, or Friday if I needed to, and we could play around with the implant some more. I felt bad because I didn’t want to take up all their time, because they have other things to do, only to be told “No no no. You’re not taking up our time. We are here to help you and we want you to do well. In fact, our favorite thing to do is Cochlear Implants! So don’t feel bad! And we’re free most of this week.”

Megan started off with trying to eliminate the problem with the “shocking” sensations I was having. We turned off each electrode to see if the shocking would go away, and if things sounded better, and going back and forth. Eventually we turned off electrodes 1, 4, and 8. Electrode 1 sometimes happen because it’s the very first one to enter into the cochlea, and sometimes it’s too deep to provide stimulation. Electrode 4 we don’t know why but we will try again in a few days or weeks. And Electrode 8 was not a surprise to her, because it is right next to where the doctor drilled the hole for the implant, and he did have to drill it 1mm wider 2 weeks ago. She had trouble with getting a response from it in surgery, due to a gigantic air bubble that was present. Hopefully it will clear up soon so we can put it into use.

The volume was also turned waaaaaaaaaay down, and the threshold levels were also lowered. I went up too high too fast with the electrodes, (but it sounded great yesterday!) and when I got into the real world (which is completely different from the quiet and calm of an audiologist booth), I was overwhelmed and getting painfully shocked to the max. My ears are power-hungry and have always been, because they’ve had power Hearing Aids for their entire listening life. Mandy (the audiologist at school) also told me this as well, because I kept wanting “more power!” Kim and Megan talked about how I may not need as much power with this to “listen” because more power = more distortion. We also got rid of all the static that I was hearing with the implant.

Megan also did some more of the words that we used yesterday to see if I could understand them. I’m doing better today, and starting to hear more of the differences in sound (like ‘ch’ in March). Identification is still spotty, but it was better than yesterday. I’m also starting to feel the “sounds” moving around in my head, instead of just on the top of my head…sometimes I “hear” it in my left ear, or on the back of the left-side of the head.

In addition to the fine-tuning, I got new processing strategies/programs today.

The first program is the one I started off with, just a little bit louder (after all of today’s adjustments were done). It’s a “sequential” program, which sends the information like playing scales/chords on a piano. She told me that most people tend to stick with the very first processing strategy that they start off with after activation.

The second program is a “pulse” program, which sends information like chopsticks on a piano. The third program I think is the same as the first program (but I’m not sure how it’s different), but it sounded the most like my hearing aids to me, and I liked this one the best (at the moment). At this point, I need to keep my hearing aid off for awhile, because my hearing aid is “overpowering” the implant (even after I turned the volume down as low as it could go), and I’m focused more on listening with the ear that I can hear more with.

Megan also gave me some information for my friends, so everybody can try to calm down (including me!) and understand how the implant is going to work, and the process of understanding sound, because we’re all excited about it, and that excitement is causing to have a little bit of too high expectations (especially in me). I love you guys very much, but we need to step back and take baby steps.

I also have a xeroxed listening journal and it’s so cute. It has a “listening scavenger hunt” in which I can write down when I first heard a specific sound on the list, and when I first am able to identify it on my own. It’s almost like a baby’s 1st… kind of book.

After that, I left all happy and relieved because I wasn’t being shocked in the head anymore, and because it sounded much better now. I was writing down the times into my sidekick, when I got an email from Mandy (my school audiologist) who wanted to see what was going on and how activation went (since I hadn’t talked to her since surgery #2). Then Dr. M came out of his office just right before I went out the door, and looked surprised to see me there. On the way home, I listened to Christina Aguilera’s first CD, and couldn’t hear “Genie In A Bottle” but I was getting some of her voice in “So Emotional” and “Reflection”, and the first part of “Come On Over Baby (All I Want Is You)”. I can’t really hear the music at all, but the vocal part is what I’m hearing (sometimes).

When Mom came home, I updated her on everything, and she went over the months again with me, and she was happy because I was able to hear the ‘ch’ in March. I’m having trouble with March/May/June, and the J and F in January/February, but I can hear “uary”. She repeated one word that I’ve always said wrong (without telling me), and covered her mouth, and I was able to say it back to her correctly on the first try, which I’ve always said incorrectly.

Right now, I’ve been attending to the job of listening with each program for a few hours, and keep track of information about how it sounded and differences with each program. I’ve been listening to National Public Radio (suggested for practice) for most of the afternoon, and it’s mostly just pulses on the top of my head (I think my brain is getting tired), but I do pick up a part of speech now and then. I only seem to hear speech when it’s up close to me. Background noises exist as a pulse on the top of my head.

But right now my hearing life is basically pulses. A few speech sounds here and there, but that’s it. It’s good enough for me for the 2nd day. I am happy.

CI Update Tuesday, July 18, 2006

A little scared right now regarding the CI…here’s the full story.

Plans changed for the follow-up testing. Got a phone call this morning asking us to come in today instead of tomorrow. We got ready in record time and headed down to the doc’s and got started a half hour early.

Got my implant turned on for a little bit. But most of the 2.5 hours were dedicated to the NRI (neural response imaging) test (which they do right after surgery, but due to electrical interference in the operating room, needed to redo to make sure implant’s actually working). They usually don’t do this after surgery (from my understanding), so it was an interesting experience for them to do it with a conscious and responsive patient.

Apparently, I still have air bubbles in my cochlea which is affecting the electrodes and their operation. During the NRI and conditioning tests, the air bubbles kept moving from electrode to electrode. It was driving Kim, the other audiologist, crazy because the results kept changing.

Then it was turned on for live speech, and oh my g*d, I literally almost fell out of my chair because of the waves in my head. I couldn’t hear anything, but I was getting some kind of stimulation from the implant. It is really hard to explain “waves in my head” – * but it was strong and powerful enough to make me extremely dizzy to the point where stimulation was physically having an impact on my head. It was affecting my balance and vision, but I couldn’t hear anything. I was hanging onto the chair, the wall, whatever I could get my hands wrapped around on and hold on for dear life. That was real scary and painful for me.

At one point Kim was really concerned about me and was asking me if I was scared, because I wasn’t responding to my mom or to her. I wasn’t scared, but the expression on my face said otherwise. I was concentrating really hard, trying to hear her voice, and she was talking louder and louder, without me hearing anything.

My doctor is being ultra-conservative/cautious, and has sent me for another CT scan this afternoon to check and make sure my implant hasn’t worked its way out of the cochlea, or poked through, and that is the reason why I can’t hear, but still get the stimulation.

So here I am, sitting in the waiting room, to get another CT of my head. I hope to g*d that the implant is just fine, and that we don’t have to go in and replace it. Apparently, there was a bad batch going around a few months ago, and the chances of getting a bad implant is around 1%. He told me he was in surgery earlier today, and he opened up the package, and the electrodes were marred, making it un-implantable, so he had to re-implant that person. We don’t think I have a bad implant, because the electrodes are responding, but it may be that I’m just super-sensitive, and that we may need to take it slow with me. It’s not uncommon for implants to slightly come out of the cochlea, especially in young children.

I would not be surprised if that was the case with the implant moving, due to the “extreme” case of vomiting that I had after surgery. I know I’ve always been a sensitive person, and have had unusual responses to different things. Hey, I’m special. 😛

I am 100% behind my doctor, and I really don’t think I will have to do surgery again, but I am concerned that the implant may have moved post-surgically, due to the violent, prolonged vomiting that I had in the hospital. If I had/have to do it all over again, I would, and with the same doctor. He is excellent, one of the best in the state, if not the entire country. And I do have my own set of medical problems/history/unusual reactions to things. I have complete faith in my doctor, and in no way do I want this entry to be interpreted as such.

Other interesting tidbits about my CI that I learned today
– Kim said that it was the smallest amount of hair that my doctor has ever shaved off on a CI patient. He usually likes to shave off more than that. She was telling me the story about when she was in the OR with him, and he had finished shaving my head, and she asked him “is that all you’re taking off?” He responded “I promised that I would only take a little off.” So she told me that that I was a lucky patient since that is not his personality when it comes to surgery and implantation. So 😀 for no big bald spots!

– The hollow space between my eardrum and cochlea is filled with dried blood. I won’t be able to see if my hearing aid works in that ear for residual hearing yet (CI surgery is supposed to completely and permanently destroy any and all hearing in that ear). In about 6 weeks, I should be able to hear or get some low-frequency residual hearing back, because my doctor is certain that I still have it there. I just have to heal up my cochlea and get the gunk reasorbed into my body.

Pictures later. It’s time for my CT scan in a few minutes. And then immediately back to the doctor’s to go over the CT scan and decide our next step. Who knows, I could be back in the hospital again this week. Apparently it is easier the second time around, thank goodness. I don’t think I could take another round of vomiting like before.

* – edit: waves in head = like being caught underneath a wave at the ocean, and being thrown all about, and not knowing which way is up or down