The Bionic Sound Project

this girl’s journey to sound

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.

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

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

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

 

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CI Update

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Imaging Tests Of The Head Tuesday, June 13, 2006

Today I had my CT and MRI at 11:45 am.

I started off with a “CT of the temporal bones, no contrast, axial and coronal”. That was short and fast, nothing to it.

I was then led out into the little waiting area, where I had to wait for the guy to come out and take me for my MRI. 10 minutes later, he was there, and we were talking about what we were going to do today, which was a “MRI with and without gadolinium of internal auditory canals and posterior cranial fossa”. He was curious about the CI, so I had to explain it to him and he was asking me all these questions about it. After we went through everything for the procedure, the realization of what he said really struck me…“Are you ready for your very last MRI ever?”

edit 1: I had to cancel my follow-up audiological appointment with Megan on the 14th, because I was sick from the Gadolinium injection. Rescheduled to the 22nd.

edit 2: I got a thank you card from him a few days later, with a personal note inscribed in it, hoping for the very best with my implant and that I would do very well with it. I have never seen such a kind and thoughtful gesture from a diagnostic testing place, especially somebody that I will probably never see again. So that was an “awww” moment for me.

 

Canceling my first audiologist appointment. Monday, June 12, 2006

This morning I spent nearly 5 hours at the hematologist with my mom. I was grumpy after being there for way longer than expected, and then became disappointed because I had to cancel my audiologist appointment. I was looking forward to talking with Megan, plus getting the ball rolling with the process of getting the OK for the CI.

I have to go back next week to the hematologist because they want to run some tests on me for the bleeding disorder. I am not looking forward to it, because the last time I was there and they drew blood, I threw up and almost passed out. How embarrassing.

Tomorrow I get a CT scan and a MRI of my temporal bones (otherwise known as one of the bones of the skull, so they can see the structure of my cochlea/head).
Wednesday I meet with the audiologist and get the HINT test and some other ones.

And then the last thing I have to do is to set up an appointment with the speech pathologist from the hospital.

 

Meeting The Doctor Friday, June 9, 2006

Today I met with the CI surgeon for the first time ever, to talk about the implant.

He seems really nice, and I am comfortable with him. I also met Megan, the audiologist, who came in as an interpreter. I was totally surprised, because I wasn’t expecting an interpreter in the doctor’s office. But she works there as an audiologist, and also knows sign language.

Both of them are very nice, as well as everybody else at the office that I met (except for the other audiologist, who wasn’t there). He did an examination of my ear, and physically, I look good for surgery, but I still have to do audiological testing (since my last test was more than a year old, and insurance companies want current test results). I also have to get an MRI and a CT scan as soon as possible. I also need to get clearance from the hematologist, because he won’t do surgery without his okay. They said that if everything checks out okay, I can get the surgery on the 19th of July.

I’m just a little stressed with mom’s upcoming surgery and being her nurse, and working it in with work, because in the past, my hours have been all over the place, with no consistency, plus the schedule is only 2 weeks in advance. This is going to be a challenge, because so many things are unknown right now.