The Bionic Sound Project

this girl’s journey to sound

The Three-Month Checkup Friday, December 1, 2006

Filed under: dizziness,dr. m,feelings,mapping session,megan,post-activation,post-surgical,programming,results,school,testing — Allison @ 11:37 am

I had my three-month checkup today with Dr. M and saw Megan for a mapping session. It was at 1, but I thought it was at 11 instead and was there early. But it was 1 pm in NY time, so I get credit for that! But Dr. M was nice enough to see me anyway, and had me come back at 1 to see Megan.

Prognosis is that I’m doing great.

Megan changed the M and T levels, and gave me a program that will work in noisy situations. So now I have one for normal life, one for noise, and one for the iPOD.

I did show up with the kumquats, and she laughed. ^.^ Told ya I would bring you some, and I’m one who sticks to my words!

Got 42% on my listening test for speech in noise, which was better than what I got with the hearing aids, but could be better. (I’m a perfectionist). I had a hard time with the beep test, because I thought I was hearing a kind of prolonged high-frequency noise, so I wasn’t sure if I was hearing it or not.

The most interesting part of the visit was when I was talking to Dr. M about the vertigo episodes from October, where he said it could be a migraine. Not the typical migraine that people think of, as there are many types of migraines in different parts of the body, including the abdomen. So it could be a type of cranial migraine, I think that’s what he said.

Anyway, to avoid that, it involves watching my caffeine, chocolate, and yellow cheese(!!!) intake. Managing stress is also another key factor. But the cheese has to do with the dye in it, and all three come from a bean, and they haven’t figured out why it causes that. Caffeine isn’t an issue, as I’m not a coffee drinker and rarely consume soda. I do like chocolate, and cheese to a degree (rather picky though).

Heading back to school tomorrow for three weeks. I’m not ready for another quarter!

I hope the next quarter will rock academically, because I did extremely well with the Cochlear Implant, for my first quarter having it. I made the Dean’s List for the first time what feels like forever and got a 3.58 for the quarter. It was amazing, especially to get the A in that class I was struggling with in terms of access services. We’ll see what happens winter quarter, as I’m choosing to fly solo…

 

Playing The Piano Thursday, November 23, 2006

Filed under: 120-channel processor,bilateral ci,hearing aids vs. ci,listening therapy,music,piano,post-activation,post-surgical,reactions,results,susan,testing — Allison @ 8:44 pm

Tuesday I saw Susan for auditory therapy. She said that I had basically finished the book, as it goes up to Level D. When I last saw her in August, I was getting 60% on the sentence tests with the keyword in the sentence. 3 months later, I’m getting 70% on the sentence test without the keyword. Magic.

Driving back home from therapy, I was listening to the radio, and heard a song that I thought sounded like it would be one of Christina Aguilera’s. I looked down at the text playing on the dash, and it was “Hurt”. I haven’t listened to her new CD that much, especially in the last few months, because I’ve been all over the place with music, trying to get a wide exposure to different genres (minus Country). So it was cool to recognize it based on the music/vocals.

Wednesday night, I sat down at my piano, as we had just moved everything from the first floor back into the house on Tuesday. The tile and the painting is done, and the first floor doesn’t echo anymore. The CI really loved the echoes (not), especially when my dog is barking. Fingers poised, I excitedly anticipated what the piano was going to sound like, as I have been waiting for this for 3 months.

Pressed the keys for my favorite chords, the measure by how I rate a piano’s sound, and was pleased. Started playing some of the songs I knew and was in good shape.

It was when I took off the hearing aid to play the piano with just the CI, that I was shocked. I was just absolutely disappointed in how it sounded. The richness, the warmth, the emotion of the music didn’t come through at all. I could hear the thunk-thunk as the keys pressed down, or the hammer striking the tightly-wound wire inside the great belly of the beast.

There seemed to be a lag or even an echo when playing. I played several songs and my heart grew heavier by the moment, as there is no way that I could play the piano with just the CI by itself. I felt like it had gone through electronic filtering and I was only hearing bits and pieces of it. There were some notes that came through with the CI and others that didn’t. It felt like an electronic version of music.

Maybe it will resolve the more I play the piano, but even when I was first activated, music didn’t quite sound like this. I hope the Harmony will resolve this issue with playing the piano, because if it doesn’t, this may be the one thing that keeps me from ever going bilateral.

Tomorrow is Black Friday, and then we are having our small Thanksgiving dinner after I get home from work. Hope you all had a enjoyable Thanksgiving.

This year, I’m thankful for the Cochlear Implant, and for everybody who made it possible. I’m thankful to all the people who have been a part of this journey, and helped me to get where I am today, and continue to do so. That’s my thanks for this year.

 

First Therapy Session with Mandy Friday, September 8, 2006

Filed under: anticipation,appointment,bilateral ci,evaluation,goals,ipod,listening therapy,mandy,post-activation,post-surgical,reactions,results,school,sound identification,sound&beyond,speech,susan,testing — Allison @ 2:30 pm

Today I had my first session with Mandy at 1 pm.

Catherine sat in for the first part of it, and we talked about my CI, and what I had done back home. It was kind of an “intake session” as I am new to their department as a CI user instead of a candidate. Catherine brought up somebody else who had a blog, Tina Childress, who has talked at the school, and is an audiologist who just became a bilateral CI user.

Catherine asked me if I was available on Tuesdays for the CI class, but I have scheduling conflicts and tried to work around it last spring, but no luck. I really wanted to take it, but hopefully they will offer it again Winter quarter. I think it would be highly beneficial for me, as I believe that the best way to make the most progress with the CI is to learn as much as you can about it, and to practice practice practice. You can’t just slap it onto your head and be done with it.

Then it was just Mandy and I, and we talked about my goals with the CI. What did I want to achieve with the CI? I was not sure, as I came into this meeting with an open mind, and no expectations and was going to just let them tell me what we were going to do. I learned back in August, after activation, that I need to relax and just go with flow, and have no expectations. One month later, they ask me what my expectations are, and I don’t have any!

My goals that I came up with today are to be able to use the phone, to make music sound like the HA if not better, to be able to follow conversations in group settings such as with my friends, to be independent of using other people to voice for me/tell me what’s going on.

Mandy then did some tests on me to establish my listening skills with the CI (same tests that Susan had done), and I breezed through all of them, scoring 100%. Her eyes were widening in amazement with each test that was done, and she finally said, after a few moments of silence “I am totally amazed. That has never happened before with others. I’m going to have to brag about you.”

I have trouble distinguishing vowel sounds (which I knew, as that’s where Susan and I had left off), and didn’t do as well as that. They were words that all started with a “B”, such as bed, bat, ball, bird, bee, book, boat, and so on.

So, Mandy now has a lot to do over the weekend to come up with a plan of therapy for me. She is also going to call Susan to get her listening therapy notes, and Megan to find out how she wants to approach the mapping for me. Mandy’s giving Megan control over the mapping sessions, since I’ve done several with her, and the last session I was told to leave the CI alone for awhile, and get used to the program I have. The reason for this is so that my brain can understand the stimulus for sound and adapt to it, instead of a changing stimulus for the same sound.

I also need to start working with/buy “Making The Connection”. Catherine already has the sound files loaded as a MP3 so I can upload them to my iPOD and use them for listening practice. Next week we will find out about the different software programs from AB and Nucleus, as Catherine wasn’t aware of needing a person to help with feedback with the program (unless I misunderstood Megan, as she prefers Nucleus’s program over AB).

I really need to buy a new iPOD, as it’s too small, and the earphone jack is loose, causing static when something is plugged in. That’s going to be one of my big items on my christmas wish list for this year (hint hint to my family).

My current baby is a 20GB 2nd-Gen one from Christmas 2002, that has been absolutely AMAZING, withstanding years of heavy use and abuse. I have 40+ gigabytes of music on my computer, and my iPOD does not hold everything that I want it to. And now there’s more stuff I got to add to my iPOD…some of my old music is going to have to get sacrificed to make room for listening therapy.

I still need to go find a Y-split so I can hook up my hearing aid and CI headphones. Mandy’s going to switch out my bilateral HA cord for a monaural cord, so I don’t have the other one dangling anymore, while I’m listening with my lone HA.

 

The final session for summer 2006 – saying goodbye Tuesday, August 29, 2006

Filed under: anticipation,appointment,family,feelings,friends,karen,kim,mandy,mango,megan,post-activation,post-surgical,results,speech,speech therapy,susan,testing,therapy — Allison @ 10:39 pm

Today it really hits me that I’m leaving and no longer working with Megan, Kim, or Susan (for a long time). I had my last therapy session with Susan, until Nov/Dec., if not till summer 2007. And I was just starting to get comfortable and settled in too.

Susan said she was going to be sure to tell Karen to pick on me about Mango. I already beat Susan to it, by telling Mandy and Karen to beware of certain people suggesting mango for a therapy word!

Today, we did the usual round of sentences and words where I looked at the paper, and told her which one it was. Doing pretty well with it, but it’s not real life. Then a new test for me! Category/Keyword, open set. We did entertainment for the category, and several different keywords (whatever was given related to entertainment (i.e. emmys – “did you watch the emmys on sunday night?”)). She would tell me that she was going to say a sentence related to entertainment, using one keyword. I had to repeat it back what I heard her say and where it was in the sentence. I was getting 60% for my first time, and able to repeat it back. The brain is a funny thing…you hear something, and you know it’s not right, so your language system kicks in to make it right. It’s amazing.

Pretty good for 3 weeks. But I still have a long way to go, and for the other test, have trouble differentiating between similar sounding words, and if they sound the same or are different. That was my reality check for the week, because I did badly on that one.

So yeah, Allison, you’re doing amazing with the CI for three weeks’ time, but this is just the beginning of a long hard road ahead. As Coach Seaquist used to say…“keep on swimming.”

Next Stop On The Tour: Mandy, Karen, and a whole new world of sounds, people and experiences. I fly out tomorrow. Oh boyee.

 

Post-Activation…One Week Later (Mapping Session #4) Tuesday, August 15, 2006

Filed under: activation,appointment,christina aguilera,happy,hearing aids vs. ci,information,itching,listening,listening therapy,mapping session,megan,music,observations,post-activation,post-surgical,processing strategies,programming,programs,reactions,results,sound identification,sound list,speech,speech therapy,susan,testing — Allison @ 5:56 pm

I am OH so VERY excited. Although, probably not as excited as Megan or Mom was. I don’t think I’ve seen Megan that excited. Today was definitely an awesome day, because not only did Christina Aguilera’s new CD come out today (which I now have in my possession *squee*), I also got some test results with my CI (even more *squee-worthy*).

The answer to last week’s programming riddle: program 1-pulsing, program 2-sequential.

I now have two new programs, and they are getting to the point where they are starting to sound like my “natural hearing”, but faint. There’s still much more twiddling to do with these, but I am confident KNOW that I will reach that point. Even music is starting to slowly sound better.

After programming, I got to do a pure-tone audiometry test in the soundbooth with my CI, testing program 1, then 2. And I have the results of the audiogram. The vertical column measures how loud a sound has to be in order to hear it. The horizontal column is the frequency (or pitch) of a sound, going from low to high frequency.

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6/22/06 – professional results

 

This is what I can hear with digital hearing aids. The sounds in the “speech banana” is around where normal people with normal hearing can hear it. This is with my hearing aids, and I still can’t hear the high-frequency sounds, so I am sorely lacking in that department.

 

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8/15/06 – professional results

This is what I can hear with Program 1. My lower frequency (to the left) sounds have improved slightly, but my high frequency sounds have shot way up. I can now hear F, Sh, Th, K, and some others.

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8/15/06 – professional results

This is with Program 2. This one is a bit louder than P1. Same results as P1, but with a few minor variations in the higher frequency.

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Overall, you can see how I’ve changed, going from a digital hearing aids, to using a CI and the results I’m getting one week later. It’s just absolutely mind-boggling and incredible to me, to be able to hear all these high-pitched sounds that I wasn’t able to hear before. I am very excited, happy and looking forward to what’s next!

As soon as I got those results, I went to surprise mom at work, and her face just totally lit up and she was so happy! While walking back to her desk, she was showing the results off to her co-workers, and everybody was amazed, heh. We then went out to lunch with her co-workers (since it was lunchtime when I arrived), and it was my first time in a restaurant since I’ve been activated. I could hear the differences in people’s voices (at our table), and knew if a different person was talking. I could hear speech sounds with the CI that I wasn’t hearing with the HA. Words were fuller and had more detail (but still didn’t make sense to me).

I also had my first speech therapy session with Susan at 3:30 this afternoon. I am going to have to learn to differentiate between similar words but with different sounds/placement. The other fun thing I will learn to work on is tone of voice without using facial/body cues. Gotta start small, then work my way up! Right now my brain is waking up, learning to interpret what all these sounds are that are coming in, and then eventually will start putting some sense to them. It’s kind of like learning how to walk, except you’ve never walked before.

So far, everything is fantastic. I have no regrets. Everything that I went through in July, was well worth it for what I’m getting now. The only negative I have right now is that my incision is itching like mad and starting to become red. We were going to try to switch it to the other side of my head to give my ear a chance to heal (and get the itchiness to go away), but the cable for the headpiece isn’t long enough to pull that off.

I’m starting to wonder if I’m already getting used to this program, because things are starting to sound really quiet once again, so I may be making a trip back to see Megan sooner than later.

Starting today, my hearing aid has started to give me an attitude. I think we have a raging case of jealousy right now, and an unwillingness to coexist peacefully.

New Sounds List
8/14/06 – the word “Now” while listening to Harry Potter.
8/14/06 – hearing benny purr with CI, and realizing it that I couldn’t hear it with the HA.
8/15/06 – differentiating between voices at my table, while in a restaurant

 

Activation Day and Pictures! Tuesday, August 8, 2006

Filed under: accessories,activation day,appointment,dr. m,electrodes,examination,family,hearing aids,kim,mapping session,megan,pain,photos,post-activation,post-surgical,programming,pulses,reactions,scared,speech,testing,things to remember,waves — Allison @ 10:20 pm

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…”

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

 

(more…)

 

2nd Mapping Session less than 24 hours after the 1st one!

Filed under: christina aguilera,cochlea,dr. m,electrodes,friends,happy,hearing aids,information,kim,listening therapy,mandy,megan,other people's stories,post-surgical,processing strategies,programs,reactions,rf interference,shocks,speech,testing — Allison @ 4:29 pm

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.

 

The Post-Activation Entry Monday, August 7, 2006

Filed under: activation day,appointment,dr. m,family,feelings,frustration,kim,megan,pain,post-activation,post-surgical,programming,pulses,shocks,sound discovery,speech,static,testing,unhappy — Allison @ 5:38 pm

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.

 

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

Filed under: activation,activation day,appointment,complications,ct scan,dr. m,electrodes,examination,kim,megan,pain,photos,post-activation,post-surgical,pre-activation,pre-surgical,pulses,reactions,scared,speech,surgery,testing,unusual,waves — Allison @ 7:53 pm

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.

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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

Filed under: activation day,appointment,cochlea,complications,ct scan,dizziness,dr. m,electrodes,examination,kim,megan,observations,pain,post-activation,post-surgical,pre-activation,pre-surgical,residual hearing,sick,surgery,testing,unusual,waves — Allison @ 2:55 pm

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

 

 
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