The Bionic Sound Project

this girl’s journey to sound

Forgot My Activation Anniversary Thursday, August 9, 2007

Gosh, I posted on August 7, but I totally forgot it was my one-year anniversary of my cochlear implant, as I pulled a ~11 hour shift for the second day in a row. Amazing how being super-busy at work will let things slip your mind, especially since I had been thinking all summer about how I wanted to mark my one-year anniversary with a small party as a way to say thanks to everybody.

Anyway, I’ve been hearing from several of you about your activation experiences (with activation dates of Aug. 6, 7 & 8). Each of you had a wonderful experience, albeit emotional, but that’s to be expected. Hearing about your experiences brings back memories of my activation day, as well as my feelings prior to activation. But re-reading all the entries makes me cry…especially the one about how I felt right after activation.

It’s amazing what sounds I’ve heard in one year. I could make a list of all the new sounds I’ve discovered in the last year, but that’s a project for another time, and I have to get up early to get one of my co-workers. But the CI has had a profound impact on my life, both through the experiences that I’ve been offered in the last year, both at school and work, and through people that I’ve met. And for that, I’m grateful to everybody and everything that has blessed me in this journey. I still have a long way to go, but the ride so far has been amazing.

Until you have been deaf, or are involved with the implantation process, most people will never understand the emotions behind being able to hear, and what a gift it is.

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Activation Day and Pictures! Tuesday, August 8, 2006

Activation Day (Aug 7) was interesting. Dad met us at the doctor’s office, and the waiting room was the busiest I had ever seen it. My appointment was at 11:30 but we didn’t get called back until about 11:45. I noticed two people in the waiting room with ankle casts on (and I was reminded that I broke my ankle not more than a year and a half ago) so I felt their pain!

Bounced into the examining room and onto the chair, waiting for the doc to come in. Was chatting with Kim for a bit while Megan finished her lunch and the doctor was seeing another patient. Finally it was MY turn! Checked out the incision which is healing well, and looked in my ear, and I still have blood in my ear, which is normal. And then I got the magical words…“Are you ready?”

I just remember everybody (mom, dad, Dr. M, Megan, and Kim) looking at me to see what my reaction was to the news and I was like “I don’t want to! I guess I’m ready but I’m scared too!” We headed into the audiology “room” and it was a nice tight fit. They’ve had more people than that in there before, and they’ve had to stick the overflow into the sound booth.

Started off with testing the electrodes to see how they were doing, all were just fine. Then we did the testing with the beeps to see if I could hear anything. For like 20 minutes, I was sitting there just feeling it pulsing on my head, and I was starting to get the strong waves again, and I got scared. Then I started to cry because the last time was horrible with the waves. Dr. M came back to see what was going on, and they were all trying to figure out what was going on, and made some adjustments. The whole thing was just so weird and unfamiliar and I was worried that the implant wasn’t going to work because of everything that I had gone through the last time with the NRI testing and having such a strong reaction to it all.

And then the moment we had been waiting for…a real live BEEP sound! We kept going with the beeps for each electrode, till I found one that was set for my comfort level. We kept switching back and forth between the beep-testing and live speech, to see how it sounded. You know, in audiology school, they must train the audiologists to say “can you hear me now? how about now? how does it sound?” as they are fiddling with the settings, it never fails!

Megan had to turn it off to do some editing in the computer and I was talking and then all of a sudden the sound disappeared, and I was like “HEY! Where did the sound go? Bring it back!” And Kim was teasing me because at first I couldn’t hear anything and was like whatever, which soon changed into hearing stuff and then I wanted it on and was disappointed when it was off! Mom and Kim kept laughing and teasing me/Megan throughout the session. Even Dr. M was amused when he popped in now and then to see how everything was going.

When we got to a point where the speech seemed to be set, Megan and Kim decided to try and test me with words to see how they sounded. We started off with days of the week, but that was a bit difficult. We switched to the months instead, and did January-June. After listening to Megan say it several times, and thinking I had the hang of it, she tested me but without being able to read her lips. I was able to understand some of it and get it correct, so there was a bit of yay/amazement there.

The funny part was when I caught Megan saying it incorrectly, and Mom and Kim were just laughing and teasing Megan “…ooo, you got BUSTED!”. That was really cool, being able to know if somebody was saying a word incorrectly, because I was looking at her with a funny look after I heard it, and I was like “that’s not a word!” and she was a little red in the face! I’m glad I was able to provide comic relief for the office and my mom!

After everything was all programmed, Megan brought out this gigantic tote bag, and the big “shoebox” full of the accessories for my implant. We went over everything and I learned how to put it together, put it on my head, use it, and about the different parts and all the accessories. There are a lot of accessories, so it’s really cool. I can’t wait to start using some of them, but first I have to HEAR!

I left the appointment with a map that was the equivalent to a 3rd Mapping session (about ~1 month), and it was up quite high. Megan told me that I could come back tomorrow if I had to, just had to call in the morning. (they know that I’m very picky with sound and wanting to get it just right…Mandy can attest to that! 5 weeks of tinkering with the new hearing aid stretched out into 10 weeks!). The real world was much more intense than the sound booth, so I was enjoying it for awhile, and then it started to become really really painful and overwhelming.

Things I Need To Remember:
1. Kim noticed that when I get stressed (my shoulders bunch up) I stop “listening” and start thinking too much and then I can’t hear anything. When I’m calm/relaxed, I’m able to understand/hear things. This is going to be an important thing for me to remember through my audiological training.
2. INTUITION IS EVERYTHING. I need to stop “thinking” and just LISTEN to what it sounds like. The reason why I think is because with the hearing aids, I’ve had to train my brain to “fill in” the gaps with what I think the sound is. With the CI, I will be able to hear all the sounds, but I need to let my head put it together automatically without thinking. No more guessing…I just have to say what I heard back, not go “i think it sounded like…”

 

Dad, me, and Mom waiting for the doctor to come in and give me a checkup and his “OK” for activation.

 

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The Post-Activation Entry Monday, August 7, 2006

4:54 PM: I want to cry, yet at the same time I’m happy, but right now I’m extremely frustrated.

What sucks the most is that my mom’s voice (one of my favorite familiar sounds) is driving me absolutely insane, and I wish she would just shut up because it’s giving me a headache and it really hurts my head because I’m getting shocked constantly. Her entire life with me, she’s always had to talk loudly so I could hear her. I’ve been trying to train her this summer to not yell/talk loudly, because with my new hearing aid, it’s not necessary to talk as loud. And now with the cochlear implant, it’s not just the volume of her voice, it’s also the way it sounds. Anyway, we got into a fight over different things/miscommunication because I was taking my frustration out on her, and finally told her (not very nicely) that “I didn’t want to listen to her anymore because she was hurting my head”. Needless to say, that got her really upset, only to later end up with both of us crying together, talking it out, and getting over it.

I’m upset because all I hear is static static static unless somebody real close to me is talking. I absolutely *HATE* putting the implant on because it really shocks me as soon as the magnet hits the internal part, and the whole thing SUCKS. I hate feeling the pulsing feeling on my head. It tends to come and go, but it was intense at times, especially with the loudness. I turned it down all the way, and I’m still having shocking.

But the good news is that for somebody whose audiologists and doctor didn’t expect to be hearing human speech on the first day, much less within an hour of hookup, I can hear SOME of it. And I got some words correctly without using lipreading. But I definitely have a loooooooooong way to go.

But my problem with the words is that I’m missing definition. It’s like it’s either hollow, muffled, or the tops/bottoms/beginning parts of the words are missing. And it’s like I’m hearing the very core of it, but not the rest of it to have any identifying details.

I’m just frustrated between the static, the pulsing, and the shocking of my head, and the sound of sounds, plus the missing information, and I’m just thinking….this is going to majorly SUCK for awhile. And I just want to cry right now…out of frustration, tiredness, and pain.

The good news is that Megan said I could come back tomorrow, Wednesday, or Thursday to play around with my implant some more, instead of waiting till the 15th. I will also get three processing programs then as compared to one, so maybe that will help with the sound sounding like !&#$.

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*sigh* It’s almost 2 hours after I’ve left the office (~3 pm) that I’ve gone into full-blown sobs and tears. It’s the cumulation of too many emotions….happiness/sadness, frustration/excitement, hope/disappointment, all competing with each other. It has been a month…if not more than that, of anticipation and waiting. Of having surgery twice and bottling up my emotions due to my reactions to everything that has happened since then. And eventually I had to crack. Today’s events just happened to be the trigger point.

My poor cat Benny was practically being drowned in my tears. He was getting covered in everything that was running off of my face, and he just had a bath yesterday. I was hugging him as I was crying, so unfortunately, his fur was absorbing all the wetness.

One of my fatal flaws is that I set my standards so high. I need to learn that it’s not always a contest, and you don’t have to be the best. And this applies to the whole post-activation process. I leave today with the knowledge that I am hearing words without lipreading within 2 hours of being activated, and if I can do that, this is only a sign of things to come. That’s pretty good.

One baby step at a time…it’s not going to happen all at once. Dad was trying to remind me of that fact today during the activation.

Now I feel better, but boy do my eyes, face, and sinuses hurt. I don’t even remember the last time I cried like this…I think it was 2004, but I am not a crier, and rarely cry. This has been one intense day.

 

Stressing about Monday Saturday, August 5, 2006

So the last few days I’ve been feeling icky. At first I thought I had an upset stomach due to going out to eat the other day, but that wasn’t it. My stomach is just in knots and all tight and achy.

Today Mom asked me if I was still feeling sick, and then asked if I was stressed about Monday. Hmm…maybe that’s why I feel sick…because I am nervous about Monday. I really need to learn how to manage stress and anxiety.

I don’t know what to expect. I kind of wish I could get it over with, but all the anticipation and buildup towards the activation is kind of exciting. But at the same time, no longer will I be able to wonder and dream about what it will sound like, because I will KNOW and have it on my head and using it.

It’s a conundrum.

 

First Activation of the CI – PICTURES! Tuesday, July 18, 2006

I’ve got an interesting story to tell you about me and my CI! I went in today to do some follow-up testing on my implant, since they had trouble with it (a possible false positive) in the operating room. I had to go in to make sure that my implant was working correctly after surgery because they couldn’t rely on the first results from the surgery.

This was the first time my implant had been turned on. I wasn’t sure what to expect, and the expression says it all! They were doing something called an NRI test, which is what they do during surgery, not afterwards. And I still have my black eye!

 

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CI Update

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

 

Surgery Scheduling Woes Tuesday, June 20, 2006

My cochlear implant surgery was tentatively scheduled for the 19th, but now has been pushed to the 26th of July, unless if they get a cancellation. *sigh* Apparently, my doctor is going out of town that weekend now, and will not do surgery on patients unless he’s around to follow up.

I can understand the reasons why he won’t do surgery, because he has a 0% infection rate with his patients. The reason for this is because he keeps them in the hospital for 23 hours after surgery, on IV antibiotics, to reduce the risk of infection/meningitis. Plus, there is a potential that I might have to stay for longer than 23 hours because of the bleeding disorder.

What this all means is that I won’t get activated until right before I return to school (need 4 weeks to heal, he prefers 6 weeks). As it stands, I may end up flying back to school instead of driving back, due to the time constraints. I may not see my car till later on in the fall quarter (boo!).

I’m excited but also scared to death at the same time of getting an implant. I want to talk to some of my friends who have gotten one and see how they are feeling about theirs now/the decision that they have made.