The Bionic Sound Project

this girl’s journey to sound

And That’s The End Of The School Year Monday, May 28, 2007

Back home in Phoenix now, but not without a crazy end to the year, but well worth it.

I moved out of my apartment, then the next day was Mandy’s wedding, which was absolutely wonderful. I caught Mandy’s bouquet, so we both were laughing over that. Then I was at the airport 4 hours after the reception was over, so I’m exhausted from all of that plus finals week and little sleep.

Anyway, I finished my first academic year (trimesters) with the cochlear implant. 3 quarters of getting a GPA of 3.00 or higher, and 2 quarters of being on the Dean’s List . That’s a first for me in college, to be on the list twice in one year.

Was talking to Catherine about it at the break between the wedding and the reception…was it the cochlear implant that helped me do better in school, or was it just the result of being older, more mature, and doing what I love? We debated that for awhile.

The reason why I think it might be the cochlear implant, is because it’s forced me to listen more in class, because I want to hear everything that’s going on, to try and understand the teacher and listen to the interpreter. Maybe it’s that extra focus that’s causing me to pay more attention, and therefore, do better.

Things Of Note
– Recognized the word “Toostee Roll” at the wedding, and then realized it was that song.
– Wearing the CI for almost 2 days straight = makes the area around the magnet sore. My hearing aid ear was sore, but not as much as the CI.
– Hearing my cat meowing constantly as he rushes to the landing, down the stairs, and greets me as he realizes I’m finally home is one of the best feelings ever.

Advertisements
 

The Christmas Post Wednesday, December 27, 2006

I still have yet to write about the CI Holiday party, but that will come once I get the pictures ready.

Flying home was good. My ear wasn’t happy, as I’ve been having stabbing pains and itchiness. Also had several attacks of dizziness in those prior weeks.

On the flight, I was able to understand “the current temperature in Pittsburgh is forty-four degrees” “thank you for flying us airways” “we are now preparing to land” over the announcements.

When we landed in Phoenix, I was grateful to a guy who recognized me from the flight, because he was able to listen and help us find our bags. We had been waiting and due to the holiday crush, somehow our flight didn’t make it onto the baggage claim board, so we were waiting for 30 minutes. By the time we found out where our bags were at, there weren’t very many left, and the carousel was stopped. Oy. But if it hadn’t been for him, I would have thought they were just very behind in unloading, since we were sitting out on the tarmac for 25 minutes due to the disruptions of flights all over the country because of the blizzard in Denver.

Christmas Eve was nice. I don’t know what I was worrying about, with meeting new family members, but everything was just fine. I worry about how kids handle a person that is deaf, and I think it stems from the fear of being ridiculed or made fun of when I was growing up. But it was all good.

We went to the 8:30 christmas eve mass, all 16+ of us, and it was too far for me to see what the priest was saying, so I just listened. I understood “our father” and “celebration” out of the entire sermon. It was easier to follow along with the music, but I preferred listening with the hearing aid than the cochlear implant, because music is just sounding weird lately.

I have the same issue with playing the piano. I really hate playing with the CI because it just sounds….blech. But I did notice I picked the optimal ear to get implanted in, because the right ear can pick up the higher frequencies on the right side of the piano, whereas the left ear is better at delivering the lower frequencies with the hearing aid.

I got a new iPOD for Christmas, and I am just thrilled. I can’t wait to get back to school so I can upload my entire music library on it.

Well, that’s it for now. Time to meet with Susan. Have a very happy holidays!

 

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.

 

(more…)

 

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 !&#$.

—————————————————————————————–

*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.

 

whiningness within Saturday, July 22, 2006

I’m sick and tired of sleeping on my left side. My left hip and ribs hurt, especially my ribs. Ugh. Still can’t sleep on my right side yet, and even if I could, it’s not comfortable.

The other problem is that either I’m too far from the TV and can’t see the captions, but am comfortable, or close enough and not comfortable. My glasses broke the day before I had surgery, and they can’t be fixed, so I have to get new ones. First I have to get all healed up, because the pressure from the arms hurt my incision, and trying on demo models in the store…eeeeeeeew germs, eeeew.

And why is it just when I finally get comfortable and can see the TV, it’s time to change the disc in the DVD? I’m now on disc 1 of season 5 of the X-Files (four 45-min eps per disc), and am enjoying re-living every minute of my shippy-ness.

And could somebody tell me why ONE pill costs close to 14 dollars? For 7 pills of my antibiotic (Levoquin), the list price is $96.11. I am so grateful for the medical insurance we have, because I only had to pay $25 out of pocket.

Ok, I feel better whining. I want to get online tomorrow, hopefully. I need human voices!

 

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!

 

(more…)

 

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