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.

 

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

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

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.

The prevalence of CIs over Hearing Aids. Wednesday, August 2, 2006

This past weekend was interesting. I went to Deaf Professional Happy Hour on Friday night to meet up with some old friends from school, as well as other people who live here in this area. Saturday was a big pool party that was a combination fundraiser for the traveling deaf softball team and a goodbye party for two deaf girls that were going off to grad school.

The most interesting part of it was that in the group of people that I was talking to, everybody but two had cochlear implants. It’s amazing how many people have been getting implanted, especially within the last 3 years. We were all trading implant stories, and so far, I’m the only one who had a bad time with the surgery/had to have it twice.

I remember the days when meeting a person who had a cochlear implant was something that was somewhat rare and unheard of. In fact, the first time I had a friend with a cochlear implant was my freshman year of college. In 1997, I worked at the oral deaf school that I attended when I was a little girl. I was a counselor for their summer camp program for deaf kids and their siblings. It was amazing, the number of them that were implanted and doing extremely well with their implants, as compared to my generation (at the time) who were still hearing-aided.

The other funny thing was that when I met up with P.J. on Friday night, we found out we had the same doctor, and were comparing notes. He asked me if i was “that girl who had a problem with her implant and had to have surgery twice” and I asked him if he was the “young man who reacted strongly to being activated due to one sound he had never heard before in his life”. The deaf community is way too small, with all of us going to the same doctor, haha.

P.J. was telling me about his post-activation experiences, and all the sounds he was hearing at the bar (that I couldn’t hear/pick out with my new digital hearing aid), and I was very impressed. He also told me a funny post-activation story about when he came home, and he heard this “ding ding ding” coming from around the house, and stopped. It kept coming and going, and driving him crazy. Finally he asked his boyfriend what that noise was, and his boyfriend told him that it was the bell on the cat’s collar. P.J. said that he wanted the bell removed from the cat immediately. It was funny how he told the story.

Found another website that is geared towards wireless accessibility. Sent an email off to Nokia to find out about their phones and the difference between HA+CI compatibility. It’s frustrating because some of the websites, like Motorola, have no information on accessibility, nor can I send them an email without being a Motorola customer.

Cochlear Implant Surgery #2 Diary and Photos Wednesday, July 26, 2006

Here are the pictures and the diary of my experience from Cochlear Implant Surgery #2, that I’ve been promising to post for awhile!

Link to Surgery #1 diary and pictures (July 10-12)

 

In the car on the way to the hospital for cochlear implant surgery number 2!

Tuesday afternoon, the results of the NRI test and CT scan determined that I needed to have surgery again to fix a minor complication with my implant (easily corrected). I am the first patient EVER in all of his years of practice to have this problem. He’s heard of it, but he’s never seen it happen, so it was kinda cool being a doctor’s first case. He definitely won’t forget me!

However, I felt bad because everybody at the office was waiting for us to come back from the CT scan till after closing hours, because they needed to see the results on whether or not surgery was needed, which I wouldn’t find out until the next morning when Myrna, the secretary/coordinator, came in.

Wednesday morning, 10 minutes after they opened at 8:30, everything was in place and all set to go. I was going to have surgery at 5:30 pm on Wednesday afternoon, same hospital as my first surgery.

Cochlear Implant Surgery Part Deux Wednesday, July 19, 2006

It’s been confirmed as of this morning. I’m having my cochlear implant surgery again this afternoon.

They’re going to take my implant out and redo it. If that doesn’t work, they’re going to put a new implant in.

But this explains all the dizziness that I’ve been having (I’ll explain later with a medical picture). I just hope I don’t barf up blood like last time.

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!

 

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

It’s Been Done – Surgery! Thursday, July 13, 2006

I had my cochlear implant on Monday, July 10th. I’m fine, but I had a really rough time with it, and ended up staying in the hospital for almost 2 and a half days. I’m at home now, and I’m doing okay, but not that great. I’m making this entry very short and will update more later.

My surgery was around 7 am, and I didn’t get moved up to a hospital bed until around 2 pm, I believe. I was very sick and having a lot of trouble with post-anesthesia issues.

Here are some pictures from my experience (on Surgery Day and the two days afterwards)

 

My Dad and I at Good Sam around 4:50 am

 

The Big Day Soon Arrives…(T-10 hours) Sunday, July 9, 2006

Tomorrow’s the big day. Just less than 2 hours till the magic midnight hour of no more food or drink. 9 hours and 17 minutes till I’m on the table (at 7:30 am), having a hole drilled into my head, and part of my skull hollowed out.

The surgery itself will take an hour, but there’s an hour after the implant, where they test it to make sure it’s working. If it isn’t, then they take it out and put the backup implant in. The only wish I had would be that Megan would be there, instead of the other audiologist, since I haven’t met Kim yet and feel nervous about that.

Right now, I am on the verge of freaking out. Earlier today, I was thinking about not going through with it. Then I realized it was ridiculous to come this far and spend ALL this money and time only to go, “oh wait, I don’t want to do this after all”, especially for insignificant reasons due to my anxiety of it all.

I’m not scared about the surgery itself. I’ve got competent and excellent doctors behind this, who are working together. I don’t have to worry about bleeding, because they know what to do to treat that if it happens. Rather, the biggest thing that I’m scared of is what happens afterwards. What is it going to be like? Am I going to regret this? What is sound going to be like? Am I going to hate the way the world sounds, and prefer my hearing aids to this cochlear implant?

I’ve got my doctors and every person that I have undergone tests with, who have looked at my audiological history and said “you are an excellent candidate”. Some of my friends, who have gotten their implants recently, absolutely love theirs and are doing well with it. But I have this feeling that if something were to go wrong, I would have SO much more to lose.

Right now, I’m sitting here typing up my thoughts and playing all my favorite songs, even cheesy ones like Hanson’s “MMMBop”, which just popped up on my list. I want to memorize the sounds of my favorites one last time before I lose all my “natural” hearing in the right ear.

I don’t know how I’m going to survive one month without sound in one ear. Music and sound have always been a part of my life, since I first put my hearing aids on at 4 months old. I have a long road ahead of me in learning to “re-understand” sound. I know that once I get activated, it’s not going to be the same as the hearing aids, and I have to keep reminding myself of that fact.

This is the moment where I need to take a leap of faith and just DO it. That’s been my whole life…taking a leap of faith and hoping for the best. It hasn’t failed me yet.

5 am, here we come. Bring it on.