How the CI Works

Many non-CI people don't seem to understand how the Cochlear Implant works; as I've got most of you asking me if I can hear yet. It's not that simple.

When I had my surgery, I simply had an electrode implanted inside of my cochlea, as well as the internal processor embedded into my skull above my ear. The internal processor is also connected to a magnet so that the external processor will connect to it.

This is the electrode and processor that I had implanted with surgery












This is roughly where it is in my head


And this is what it will look like when I wear the external processor when I get it in about 2-3 weeks. Mine will be approx the same color, but bigger/thicker and closer to my ear.

Image via Wikipedia

A vague statement of how this will all work to help me hear is this:
Sounds will enter at a microphone located at the tip of the ear on that ear piece. They do their digital job and transfer from there to the internal processor, where the sounds are transformed into electrical energy, and begin to activate the electrodes in my cochlea. These electrodes are going to bypass the "dead/non-functioning" hair cells in my cochlea and imitate the sounds, where then, my nerves are going to react and send the information to my brain and my brain will re-learn to process sounds.

As mentioned, it is imitation sound; nothing is going to sound completely the way it does to the normal ear, but frankly, if someone has been deaf for years, they can't really compare the sounds they hear with the CI to anything. People like me though, that has heard things in the past, are likely to contrast. I've heard that a hearing ear and a cochlear implanted ear hardly ever seem to be in sync with the quality of sounds. Hence why I'll also have to experiment to see if I'll prefer wearing this CI with a hearing aid in my other ear or not. Either way, the CI typically helps with the quality of one's life by allowing them hear again, in general, even though it is not perfect and communication can still be a struggle.

Magnet location seems too close to ear. But maybe not.

I was feeling where the magnet is located on my skull and realized it's oddly close to my ear. So close that I'm wondering if it's going to be in a war with the over-the-ear piece. Especially cause AB's ear piece is pretty massive. haha.

See this image: here -- that's like exactly how close the magnet piece will be to my ear. Though this little girl isn't even wearing an ear piece.

Anyway, I'm recovering well now. Most of the time I've been forgetting I just had surgery, until I go to bed. Since I still can't sleep on my right side and it still seems to develop a dull pain when I sleep on the back of my head. Besides some random itching where the tape is behind my ear, everything seems fine. I'm wondering if I'm gonna need a new pillow. Something softer for my ear than the flat feather pillow that I prefer. Doesn't provide support or anything, but that's kinda why I prefer it... I just sleep best with my head as low as possible.

Jaw Issues

My remaining recent issue since the surgery is that my jaw will not open all the way. Opens about only an inch... not quite wide enough to say, eat a burger. I use to have to pop my jaw open every morning, but yea, can't do it now. Not that it hurts trying, but it feels like it might be so dislodged it doesn't even know where to pop into place or something. I can't even crack my neck on the side of the surgery. Is this temporary? Do I need a chiropracter to fix my jaw? Any remedies?? I would like to be able to eat my burger tonight!

Random thoughts

Does having this magnet in my head make me more prone to get struck by lightning than otherwise?

What happens if I DO go through one of those security metal detectors?

What happens if I were to bang my head where the magnet is? Would it just hurt? Break? Press through into my brain? Probably depends on how hard the impact is, but still.

So, I've read people with these CI's gotta be more cautious with physical activities/sports, is this in relation to the external piece or both pieces? Can't I just leave the external off and be fine?

Do any electronic devices interfere with the CI?

6 Days Later

As you may have read in my last post on day 3, I was doing better. I was eating, watching tv, on the computer, drinking water, taking naps... overall, more alive than I was the previous 2 days. But then that night, after eating a nice plate of leftover chinese food and drinking 2 glasses of water (I mention this so you don't think I was actually starving myself like people are thinking), I went to bed about 3 hours later. 10 minutes into watching tv in bed in an upright position, I began to get really nauseous so I went to sleep. I figured the sleep would make the nausea go away like it did the previous 2 days...and frankly any other time of my life, but it didn't. I just got even more nauseous and developed a migraine. For nearly 40 hours total, I was stuck in bed, with my head on my left side, because trying to lift it felt even worse. Lifting my head brought on that feeling that screams "lay the heck back down!" because I've had it several times in the past, and it resulted in me fainting or crawling back into bed to sleep it off.

About 14 hours after it started, my husband got a hold of my surgeon (after 4 hours) and the surgeon wanted me to go see him. He wanted me to get out of bed, in a car, sit there for 40 minutes, and walk to his office for him to check on me. It was literally impossible for me to do that at that point. My husband called 30 minutes after that to cancel the appointment, but the office was on lunch. He left a message, but apparently my surgeon never got the message and waited an hour for me to show up. And was upset about it.

I should mention I couldn't even get up to pee. I was peeing in a bucket over the side of the bed while keeping my head flat, every 2 hours. Seriously, it was pretty bad. We contemplated what to do for an entire day... go to ER, wait it out, or what? We didn't feel it was serious enough for ER, so we didn't bother (or frankly, I just need a PUSH to go to the ER cause I'll never on my own, but my husband was thinking too much like me). I attempted to get up at one point because I thought, "well maybe my body wants me to puke...", so yup, I puked. Then felt worse. Back to bed. Then took some over the counter motion sickness medicine which didn't seem to work at first, but certainly put me to sleep, and 12 hours later, I was able to get out of bed for 2 hours, even though I was still nauseous and dizzy, but it seemed like some improvement. Until I puked again. And oddly, both times I puked was right after I took a Tylenol. At that point, I was OK enough to walk around, and we went to Urgent Care. The doctor confirms ketones in my urine and that I'm severely dehydrated. She also thought I might have a bladder infection because of my peeing so much on so little fluids. My right eardrum was red and she attempted to get a hold of my surgeon to confirm if it is normal or not, but he didn't answer.

We went home, I took my anti-nausea pill she gave me, and was sipping fluids as much as I could handle. I downed one glass of water, and one glass of gatorade. Ate a strawberry popsicle, some graham crackers and chinese food. Didn't puke. Good news. Went to bed just a little bit dizzy and woke up feeling as normal as I could feel today. Just a fullness feeling in my right ear/side of head, and a little bit of dizzyness. My surgeon called this morning to confirm about my red eardrum, and says it is a normal, but also sounded upset (according to my husband) that I went to a different doctor instead of seeing him on monday.

Overall, the experience was ridiculous and I never want to experience it again. I can't figure out where the dehydration decided to kick in, cause like I said, I was eating and drinking the day before it all started when I went to bed. Which was making me wonder if I was having a digestive problem rather. So, I don't know, but I'm just gonna keep drinking and eating and hope it doesn't come back. I'm due for my post-op appt Oct 1, but trying to get that shifted so my husband can go with me.

3 days later

The nausea, dizzyness, and pressure seem to come and go throughout the days now. I woke up feeling not so bad today, so I took my shower and washed my hair as gently as humanly possible. Then the pain and nausea came back after that. Which is ridiculous, because it just makes me want to sleep it off, but then again, I can't even sleep in a comfortable position at all. It's evil. Really am looking forward to the day I can sleep without whining.

I stopped taking meds a day n a half ago too. I was only taking about 200mg of ibuprofen, but felt it was making me feel worse than I felt in the first place, and I guess the pain is bearable. Or I'm just more eager to feel the day the pain is actually gone without the illusion that the pill is making it seem that way.

I've noticed my digestive system seems messed up since the surgery. I haven't felt anything in my stomach region move in 3 days, haven't had a bowel movement, and haven't felt my stomach growl in hunger. AND I look like I've been eating plenty (bloated) despite the lack of food. Even though last night we got my favorite "recovery" food: chinese. It was pretty great. Except having to eat everything in bite size pieces and it took me 30 minutes to eat what I usually eat in 10 minutes. Even despite dinner last night, and a waffle I just ate for breakfast, I still can't feel anything going on down there. What gives?

So I was nagging Thomas all day yesterday to go get me a neck pillow from walmart, but when I finally look online so he knows what to get, it says Walmart isn't selling them in stores anymore. How ridiculous is that? There's gotta be a good follow-up pillow I can try and get so I can sleep better. Cause my left ear is dying. Although I managed to sleep on my back with my head slightly to the left this morning, it still wasn't super comfortable, it was just my only alternative so my ear could take a break.

I wonder how long until I can work out on my stationary bike again. Probably when I actually feel 'ready', but ya, that could be like 2 weeks. :-/

What do I do?

So I'm becoming annoyed that I wasn't given more post-surgery information. All I was told was i can take the bandage off 2 days later and shower if I wanted. That's all. I wasn't told how to wash the area or if I can. My husband and I took my bandage off earlier to check out the area and rewrap it lighter cause it felt like it was pulling all my hair and it was starting to drift off my head. The surgeon didn't shave much hair, there's not much blood or anything, just some tape over the incision, which I'm assuming has stitches under it.... right?

My questions:
-Do I take the tape off when I shower/wash my hair?
-Should I keep the hair away from the area?
-Can I rinse out the inside of my ear?
-When will this tinnitus calm down?
-How long should I expect to be dizzy every time I get up?
-Why is sitting upright not helping with the pain? It seems to feel worse compared to when I lay on my left ear, but it doesn't always go away when I lay down.
-When can I expect to be able to sleep on my right ear again?

I understand the results are different for everyone, but just hearing other people's own experiences would give me a broad idea of what to expect. All I've found is one informative note indicating it took 3 days for the lady to feel a little normal again, though 3 weeks til she felt completely back to normal. I know I overall gotta wait and see how I feel everyday, but it's kinda sucky. I especially don't like when something disrupts my ability to sleep, cause I love sleeping.

Side note, I briefly felt something vibrate where, I think, the magnet is implanted. Not sure if it had to do with that or my hair follicles or whatever. Not that my hair seems to vibrate in general anyways... haha.

Hoping I wake up a lot better tomorrow.

Surgery went well

So I was told.

Here's the day or surgery went (yesterday): after a measly 4 hours of sleep and waking up 3:30am and waiting to leave at 6am, we got to the outpatient surgery center in downtown Phoenix, an hour early (we were expecting traffic, which wasn't so bad in the carpool lane). We arrive at about 6:50am, fill out paperwork, and am called in around 8am. They have me strip down to the undergarments, put on a robe, feet slippers and a hair slip and ask me a bunch of questions. Then the nurse puts the glorious needle in a vein on my hand to give me fluids and check my anemia levels. Then the anesthesiologist shows up and tells me he's going to give me something to "relax", which 2 seconds after he puts that in me, everyone gets really dizzy and I start feeling a lil nauseous, and I passed out. I feel like I was tricked, cause that was suppose to "relax" me, not knock me out. Either way, I vaguely remember being rolled into another room and them telling me to move onto another bed, in which case, i passed out again. Next time I woke up, was about 40 minutes after the surgery. Everything was really blurry and I felt like puking. I had the shakes for about 10 minutes... side effect from the anesthesia I think, then I managed to get my clothes on, in a wheel chair and out of the hospital. My husband and I got home at about 12pm.

My head is wrapped in a huge white bandage and I was told to sleep upright to reduce swelling. Even though I managed that on n off for 4 hours yesterday, I just couldn't do it. So I switched to sleeping flat on my left side for 10 hours last night. Certainly didn't make my good ear feel good, but it hurt worse sitting upright. The pain isn't extreme and I wasn't given any painkillers, though I wish I was, so I was told to take ibuprofen or tylenol as needed. Which didn't seem to help much, and ended up making me paranoid so I stopped taking them cause I felt I was taking too many. Burping tends to hurt my ear drum, although the pain isn't as bad today as it was yesterday. Frankly, besides some swelling under my ear, I feel like the most pain is from my hair being pulled and from where the magnet is implanted. I'm also noticing the bandage is traveling up my head, which is making me think it's pulling on my ear too, which can't be good, so my husband and I are going to attempt to take this one off later and put a new one, which I can leave off tomorrow.

Other than all that, the tinnitus in the implanted ear is annoying and loud and ongoing. I haven't been able to eat anything solid, besides 2 crackers, in the past 24 hours either. My first attempt was some applesauce yesterday but I instantly felt nauseous. I've been drinking some broth here n there, but I'm noticing it's making me tired and dizzy. I also can't open my mouth very wide, although it's likely because I usually gotta pop my jaw in the mornings and I'm not sure I wanna attempt that today.









More to come soon.

Untold things not to take before the surgery

I got a little curious and researched further about things I shouldn't have taken before the surgery, that I wasn't told about and found several lists, which are making me paranoid.

Dept of Otolaryngology

Dallas Otolaryngology

More extensive list of drugs/herbs not to take before any surgery

Basically, it says do not take advil, ibuprofen and such drugs 10 days before surgery, but I don't recall reading it anywhere in anything I was given, and I took an ibuprofen about 2-3 days ago and now I'm all paranoid if I'm going to bleed to death or something. I don't think it's common... bleeding to death from them... but it'll cause me to bleed more than I would otherwise and I suppose it'll be an issue. I'm currently on the phone with the surgeon's assistants to find out if I need to reschedule before this.

Besides that, I also drink these natural energy drinks called Guru, and although nothing in them is on the lists, even that is making me worried. I would've preferred being told about this stuff so I could be super precautious and not be all worried like I am right now. Last thing I want to happen is to die from over bleeding or some heart issue and leaving my husband and family and friends miserable from it.

On the other hand, apparently the anesthiologist never got a hold of "me", and I never got a hold of her, and it seems she was suppose to confirm things with me before the day of the surgery, but we'll see what happens tomorrow... if they don't tell me to reschedule... hoping they won't... still on hold on the phone right now... seems like it's not a big deal (at least to my surgeon), so we'll see how tomorrow goes...

Pre-op Appointment

Today I had my pre-op appointment... which was simply a quick review of what is going to happen tomorrow. By quick, I mean, 10 minutes. I'll arrive at 7am, be put to sleep at 8am, surgery will begin at 9am and finish around 10am, then I will wake up around 11am, and go home. Good news is I will be able to shower/wash my hair on saturday when I take the bandage off. Which is great because so many people said they had to wait 5 days. Other good news, my helix electrode did arrive and it will be the one he's going to put in. Upon my husband asking him about it, the surgeon declares he usually puts in the 1j because it's easy. By a surgeon saying "easy" does that equal "less chance of a malpractice suit?" Or less complications. Maybe it even means faster. Whatever; I don't know why they wouldn't just put in the BEST electrode to begin with. If half these people were aware there was a better one that they had to request, they'd probably request it.

Well, more to post tomorrow, if I'm well enough to get online. Or simply soon. So happy to get this surgery over with tomorrow.

Oh, and my husband came up with the genius idea of posting about his point of view after my surgery. Which I suppose is the same as with parents posting about their kids getting the CI, but either way, he may be making a few contributions in here soon about his perspective. So far, he's mostly just scared about me getting this surgery. For the same reasons most people are. It's amazing that I'm the least scared of anyone I know- I never think bad things are going to happen. I mean, they COULD, but it seems in my life, if I can imagine the bad thing, the bad thing isn't going to come true. Therefore, the good and sometimes unexpected side is going to happen. Tada. I hope nothing bad happens though because he's already mentioned he'll feel guilty by feeling like it's his fault. :-(

Of course, nothing bad is going to happen though. :-)

Potential Rescheduling to occur

I am currently scheduled for my surgery on thursday, but it's possible it'll be rescheduled. I recently found out that I have the option (kind've) to get the 90k helix electrode instead of the 1j curved electrode, but that it depends on the surgeon and it requires a week to be ordered and mailed to the surgeon. Totally wish my source of this information had been around to reveal this to me a month ago cause at the same time, I want the best one, but I don't wanna keep waiting around on this surgery. I'd like to get it over with and start the new process. Either way, I don't know what to expect and am hoping I hear back today (monday) if my surgeon implants the 90k and how long it'd take to receive it. Maybe he was planning to implant that one the whole time... but maybe not... maybe he won't implant that one... then I dunno.. more issues, I suppose.

My husband and I just spent about 6 hours today rearranging 3 rooms in the house, including cleaning. Our living room is currently.... nothing, as we moved the living room into the den, which is a room right off the living room. We prefer the smaller space in here and the carpet, as far as being maximum comfortable for watching TV goes. We are only renting this house though, so it's like, whatever.

Going to bed pretty soon and eager for tomorrow's news.

One week

In likely one week from right now (1:00pm) I will be just getting home from the surgery. And Thomas has managed to get thursday and friday off from work to be with me (which wasn't even necessary, but if he can score a day off from work, he'll do it), even though there's a slight chance the commanders will be mean and make him go to work. Either way, he'll still be able to go with me to the surgery since it's at 7am, but as soon as we get home, he'd have to get ready and leave for work if it comes to it.

On wednesday morning I've got a pre-surgery appointment. I guess to go over everything that is going to happen and make sure I want the AB and so on. Maybe, I'm hoping, I will be able to choose where exactly I want him to put the magnet piece. Yup yup.

Then it appears Oct 1st, I have a post-surgery appt... not sure what for... maybe to make sure my scar is healing fine and everything. Then I'll get the external piece and get it turned on in mid October. Literally, right before my 2nd Anniversary and Thomas's birthday.