The Bionic Sound Project

this girl’s journey to sound

Actual Implant Surgery Video! – *GRAPHIC* Sunday, July 30, 2006

Actual Implant Surgery Video – WARNING: GRAPHIC

And just because I *had* to…(thanks to Jen)




 

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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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!

 

Saline Solution, Phones, and Activation

Losing 7 pounds in one day is really weird. Gotta love IV saline solution puffing you up like a balloon, and then getting it all out of your body with frequent trips to the bathroom. My mom is nagging me because she’s worried about me screwing up my electrolytes + potassium levels.

I’m about to give up on my phone, because I’ve sent text messages and am not getting responses back from people. Some said they sent me messages when I was in the hospital, and I have yet to receive them. I kind of wish I knew if I can use a real phone or not, so I could decide what to do with this phone. At least I know the email is consistent.

I’m excited about my implant activation date, and have already started a countdown to it. That is, only if my doctor says yes. I have to see him for surgical follow-up on Wednesday, and then again just right before I turn my implant on. I’m still on track for my activation date, despite having surgery twice, which is a big yay for me.

 

on my “things to hear with the CI” list… Thursday, July 20, 2006

On my “List Of Things To Hear With My New CI”

1. Hear Rice Krispies go “snap, crackle, pop”

Gotta thank the commercial on TV where the mom is sitting with her son, and he hears it for the first time.

I told that to Carmen, my nurse, and she said that from now on, every time she eats Rice Krispies, she’ll think of me. 🙂

What other sounds would you put on the list to hear for the first time, if you were deaf and couldn’t hear a lot of stuff?

see the responses from 14 of my friends

 

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!

 

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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

 

3 New CI pictures! Friday, July 14, 2006

 

Me in bed with my grandma’s cat, Benny. As soon as I plopped into bed the day I came home from the hospital, he came running and has been at my side pretty much ever since. He actually tried to groom my incision area, but I made him stop so it didn’t get infected.

 

 

Just 5 Days After Surgery…I have a big fat bruise back there too! Right now it itches like mad.

 

 

And now I have a black eye!

I was able to take my first shower today since Monday. EW! Boy, was I happy to get all cleaned up and get all the icky poo stuff off of me. Last night, I woke up at 3 am and felt like the right side of my face was swollen shut. I could barely see out of one eye. Turns out I now have a black eye, thanks to the facial nerve monitor that they use during surgery. I also have a bump/bruise in the center of my forehead, but it doesn’t show up in the pictures.

I’m doing much better now, don’t really have nausea anymore, but I’m still dizzy. I already fell on my butt today when I was trying to pick up something from the floor. Ow!

I need to put up an account of exactly what happened to me in the hospital, but I can’t sit here for long before I feel sick and get really dizzy. I love you all guys, and thanks for your support and well-wishes on the original post where I broke the news to you!

 

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

 

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