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

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

 

After Surgery Update Tuesday, July 11, 2006

Just a quick post since I’m not coherent (but the most coherent I have been since coming out of surgery).

I’m alive, I made it.

I’m hoping/probably going to stay here an extra day, because I have been soooooooooooo sick. Between a bad reaction to the anesthesia, and the fact anytime u have surgery done on the inner ear, it affects your balance/makes you dizzy. Between those two, I’m having a lovely time.

Much thanks to Alex for the suprise visit and the beautiful roses you brought me.

I’m getting really tired now, so talk to you later.

P.S. I was mad last night when they brought me “real” hospital food, and I wasn’t able to eat any of it. Man, the chocolate mousse, bread, milk, mashedpotatoes, green beans, and salad I wanted. Heck, everything but the mystery meat.

Not looking forward to breakfast, since I hate breakfast, haha.

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.

Pre-Surgical Appointment Thursday, July 6, 2006

Today was the pre-surgical appointment. My dad is starting to take an interest in this whole CI process, and came along to this appointment. My stepmom couldn’t go because of work, but I would have loved to have had her there and involved with this. My mom came along as well, and it’s just amazing how well she’s moving around after having major back surgery.

At my first appointment with my doctor, he learned where I go to school, and mentioned that there was another girl from my school who was also getting a CI. I had a feeling I knew who, but due to the laws, he couldn’t tell me (and he couldn’t remember). Through talking to a mutual friend of ours (who also has a CI) about some CI stuff, he mentioned her to me, so I sent her an IM tonight and we chatted. It’s funny, because she was one of my old residents on my floor when I was an Resident Advisor, and we lost touch. Now we are going to compare notes and post-surgical procedures. I thought it was kind of weird, because he was trying to schedule us both for the same day.

In short, I am just pleased that my dad is starting to take an interest in this stuff, because it means a lot to me. And the transportation issues have been worked out, because my mom can’t drive yet, and I won’t be able to drive us home the next day. So my dad is going to drive us to the hospital, and then bring us home the next day.

Today, I had to get two vaccines: pneumococcal polysaccharide and Hib. Personally, I would rather get a shot than have blood drawn, because my left arm hurts sooooooo much. After today, getting blood drawn seems to be the better of the two evils.

Right now, the only thing keeping me from surgery is the hematologist’s clearance. I had my blood tested last Friday, so hopefully everything checks out. My doctor just doesn’t want me to start having issues with bleeding in surgery, or having bleeding into my head after the procedure. But other than that, I’m pretty much all set to go.

And before anybody asks if I’m nervous, I’m not. I’m just…neutral. At this point, I really don’t want to talk about it anymore. Course, I’ll probably freak out on Monday.

On an unrelated note, my sidekick-phone is being a pain in the butt. It keeps dying and restarting on me. Hopefully after the surgery I will be able to get a new phone and maybe even LISTEN on it!

Evaluation with the Speech Therapist Friday, June 23, 2006

Today I met with Susan, the hospital’s speech therapist, to undergo the speech part of the CI evaluation.

When we arrived at the hospital, there was a crime scene bus, a police car, and the coroner’s van parked in the circle outside the main entrance. I was wondering what was going on, and was teasing my mom that it was like a episode of Law&Order. I was nervous going in there, because I had never been to that hospital (Desert Sam) and the directions on where to meet her were complicated. The other part of it was that my experience with speech therapists in the past has usually not been good (save for a few gems), so I was dreading going to the appointment. Mom reassured me that she sounded very nice over the phone, but experience leads me to be distrustful.

Susan was waiting for me at the Physical Therapy admissions counter, and after standing there for a few moments waiting to register, she turned to me and asked if I was meeting with her. She also had a graduate student “shadowing” her today, who also did some testing. We did the usual battery of speech-stuff, and I did extremely well on all of them, and they both were impressed with how well I have done with my hearing loss.

The speech tests help determine how well I can speak and understand words. The results helped her to figure where we would need to start in therapy, post-surgically. I won’t have to start at the very bottom of the ladder, but will be more towards intermediate training, because of my comprehension.

The whole experience left me feeling positive, because she was absolutely awesome. I am so happy that I can have her (and Karen) as my therapists, and now I have one for home and school. It’s a relief to know I have a team set up in both states, ready to deal with me after the surgery and help me learn to make the most of my implant.