Let's See Who Has The Bigger Head!

February 14, 2004.  My mom, dad, and I walked into the Children's hospital for my neurosurgeon appointment.  We still had no idea what was going on with my headache, and we thought this appointment was to learn what it was and discuss options.  We went in with high hopes, because we're pretty positive and awesome people.

We parked the car and went in the building.  The Children's hospital at the time was very colourful in a 70's seizure-inducing kind of way.  We sat down on these hard plastic couches and proceeded to make fun of all the people sitting around us.  Well, to clarify, Mom and I did, and Dad shook his head in an I'm-laughing-but-am-actually-so-embarrassed-that-I-know-you-two way.  It was super depressing around that area of the hospital because all the children with brain conditions and stuff are there, and a lot of the people are pretty sad.  Well, I should say the parents are pretty sad, because the kids always seem to decide that no illness will get in their way of being a kid, and are just excited to be able to spend the day playing with the grubby toys while they wait for the adults to talk.  The parents though always seem to feel that no one else could understand how terrible their lives are because of this, which is weird because if they all talked about it while they waited, they'd probably end up feeling infinitely better.  Just my opinion though.

Finally the nurse comes out and announces my name.  The three of us follow her in a giggly single file line into a room.  I sat down on the bed, my throne for the next few years, and my parents sat down in the chairs.  And then we waited.

Waiting for the doctor for things like this is like waiting to see whether you've attached a really expensive TV to the wall properly when you take your hands off for the first time, but that few seconds is stretched out for about a half an hour or more.  Your heart is trying to escape through your mouth, but it kinda got stuck half way and is instead trying to punch a hole through your throat. You have to sit there though pretending that you aren't about to have a heart attack and are the bravest person in the world, because no surgeon likes to walk into an exam room with a person curled in a ball in the corner with tears streaming down their face.  Believe me.  The three of us chatted and made fun of the room for a bit, all of us pretending to be super brave and having an awesome time.  And then he walked in.
I won't say his name just in case any of you are feeling super bitter about my health stuff and decide to take it out on him, but he has crystal blue eyes and is about 9 feet tall.  Even dad later admitted that this guy is "dreamy" (I'm not removing that, dad!).  He shook our hands and sat down, and proceeded to excitedly explain what was wrong.  He showed us my MRI and was taking measurements and everything on the pictures, clearly fascinated by this whole thing.  I was momentarily distracted by the fact that I was looking inside my own head, but managed to focus.  I had something called Ciari Malformation 1.  My brain tonsil was too large, causing the spinal fluid to not flow around my brain.  They usually do surgeries to correct this if the tonsil is 5mm (1/5" or something) too big.  Mine was 19mm too big.  It was so large that it was coming down into my first vertebrae.  The typical symptoms of this is a headache when you cough or sneeze, because of the extra pressure.  Mine, a constant headache, wasn't anywhere near typical, and he said it was "significant" and "the worst case he's seen in a pediatric patient" and other encouraging words about my massive brain.  Being us, of course, my parents immediately started making fun of me for having a big head.  We weren't really using humour as a way to hide that we were scared, we were just being us and finding the humour in the situation.  The doctor and his nurse didn't really know how to react to this, though throughout our various meetings in the future he began to join in.  He explained the surgery (which I will explain later in the story), and asked if we had any questions.  My parents asked a couple, none of which I remember, and then it was my turn.  I asked what the odds were of me dying.  I'd never had surgery before, and this seemed like a pretty thing in my mind.  I was assured that the odds were quite slim, but that just told me that there was some chance that I could.  That freaked the heck out of me.  Although, if I didn't get the surgery, it would kill me, so I didn't really have a choice.  I tried to focus on the idea that my headache would be gone after.  At this point, the doctor measured my head (I was thinking he was trying to figure out how big of a jar he would need to put my head in after I died) with this tape measure thing.  My parents then asked if we could measure their heads to see which of us has the biggest head.  Turns out it's me, then dad, then mom.  We later measured Kyle's too, but I forget how his placed.  Bigger than Mom's freakishly tiny head, anyway.

At the end of the appointment, we were given a date for my brain surgery, April 12th, 2004.  It was the first week day of spring break, and I would be recovered and back to school by the end of the break.  We left feeling hopeful, giggly, and scared out of our minds.

It All Started When...

Hi, I'm Kelli, and I have bad health.  I've been having problems for eight years, and in this time I've found the hardest thing is being the only person I know with them.  I didn't find support groups, and no matter how supportive my family and friends were, I still felt ridiculously alone.  I'm writing this blog to not only try to get my thoughts and feelings about it out, but also to have a place on the internet that other people with bad health can relate to, and to hopefully help them to not feel alone.  If you're reading this and have bad health or are somehow affected by someone else's bad health, please read on, and suggest it to anyone that you know that may need some support.

It all started with a headache.  I was in grade 11, and it was the start of the school year of 2003.  I had a small group of close friends, and at the time I thought nothing could come between us.  After having friend troubles in junior high, I finally felt like I fit in.  I hadn't really had headaches before, but my dad has had migraines since he was 3, so I figured genetics finally just kicked in.  Having never had headaches before, I didn't find it weird that I actually just had one constant headache.  It was a pretty low pain level, but I woke up with it, spent my day with it, and went to sleep with it every day.  It wasn't bad enough for me to take more than a couple migraine tylenol's once in a while.

As time went on, my headache started getting worse.  It started getting pretty bad quite quickly, and my parents told me they wanted me to go to a doctor.  I went to my family doctor, and she suggested several things: massages, a mouth shunt for sleeping, acupuncture, etc.  We were of the opinion that the headache was caused by stress, and my tight muscles and teeth clenching while I slept were some symptoms of it.  We thought that if I took steps to relive these symptoms, it might help my headaches.

The massages were extremely painful.  We decided I should go in for an hour, because my back muscles were so tight that my back felt like a brick wall.  I would go in, tell the massage therapist to dig, and then clench my teeth and get through the hour of extreme pain.  At the end of the hour, my head hurt more.  I would leave the massage looking like I just went through an hour of torture, but would always tell my Mom (who would always come with me) that it felt great, and I felt so much better.  My mom is a smart woman though, and knew I was lying my butt off.  We stuck with it a couple of times, until the massage therapist told my mom that an hour was too much for me.  We decided to cut it back to 45 minutes, though it still didn't really help.

The mouth shunt was hilarious.  If you've ever got some sort of mouth piece, you know the process of getting it fitted.  They put cement around your top teeth, let it dry, and then rip it off.  It feels like it's going to pull your teeth out.  Then they do it on the bottom.  After a couple of weeks and a ridiculous amount of money, you get a plastic strip that's formed to your teeth.  When you have it in, you sound like you have a massive slur. And even though I couldn't really close my lips and drooled a lot with it in, I looked pretty damn attractive.  I know Mom and Dad only laughed out of jealousy.  I used it for a couple of weeks and gave it the ole' college try, but at some point every night, I would take it out and put it on the other pillow on my bed.  As you can probably guess, this did absolutely nothing for my headache.  I took this attempted method as a lose.

The acupuncture is something I'll never do again in my life. I have nothing against needles, with everything I've been through I welcome them as an unpleasant old friend.  I went in with an open mind, told the guy why I was there, and laid down on the bed.  He then did what he was supposed to do, stuck about 20 needles in me and left the room.  I remember the smell of the antiseptic stuff, the dim lights of the room, and the noises of the store outside.  He'd gotten only one spot that caused some sort of painful twitch, so it wasn't too bad.  Afterwards, I was told to come back in a week.  It didn't work, but I thought it might be one of those things that works over time, so I stuck with it.  I came back and told him it hadn't worked so far.  He seemed to take this as a challenge.  He stuck about 30 needles in me this time with a bit more force than before, and this time he got a few spots that gave me really painful twitches.  At the end, I was once again asked to come back in a week.  A week later I came back and once again told him it didn't work.  This made him angry, so he decided to get a little creative.  He stuck one between the nail and skin on one of my big toes.  Let me tell you, this isn't a pleasant experience.  After making sure it hurt, he decided to put one in my ear.  Then, once it was in, he decided that wasn't good enough and twisted it.  He left the room only when my salty tears were running down and hitting the spot that the needle was in.  The worst part of it was the fact that it didn't help, and that was all for nothing.  He told me to come back, and I was like 'oh yeah, I'll call when I check my schedule, yayy' and then ran away and never came back.  I still have nightmares about it.

Once I got through all of this, I went back to the doctor and said it wasn't helping.  She decided to refer me to a pediatrician who specializes in headaches.  I was still thinking I was just getting some weird migraine thing, so I wasn't overly worried.  My dad and I went to the pediatrician's office a little while later.  I had never had anything super worrying up until then, so I felt really uncomfortable sitting in this office with all these kids running around, some with obvious health problems.  I remember noticing the Cancellation Policy sign for the first time, saying that it was really difficult to get an appointment, so cancel if you need to so other people could get an earlier date.  I found it weird because it really didn't take me that long to get in.  In fact, I think it was less than a month.  I decided luck was on my side, and it didn't occur to me that maybe I got in because my problem was a little worrying.

We went into the office.  They asked a bunch of questions about my dad's migraines, and about my headache, and did a couple of tests.  Now, looking back on it, they were pretty standard tests, but at the time they freaked me out a little bit.  They told me I needed to get a CT scan, and that would give a little bit more information.  I was scheduled to get one at the Children's hospital shortly after (it wasn't more than a week later, though I don't remember how short).  This was still a little worrying to me.  I've never broken a bone, and before this I hadn't gotten any tests for anything before.  I was one of those kids who'd brag that the only time I was in a hospital was when I was born.  Ah, the innocent days.  Regardless, my family and I were still thinking that it would be fine, so we kept a positive attitude and I felt okay.

The day finally came for the CT scan.  My mom and I went to the Children's hospital, and I was told to lay down on the little cot that went into this massive doughnut shaped machine.  Mom came in with me, which is good because I was so intimidated that I could have thrown the lead apron I was given at the nearest person and thrown a tantrum.  The machine had little stickers all over it, and, being a normal 15 year old, I told mom how funny it was that they thought those stickers would make a kid feel better.  Then I started thinking about how cute the little stickers were and about how much I hoped I'd get a lollipop at the end.  I went into the machine and they started doing the test.  This is by far one of the least stressful tests I've had, though at the time I was terrified.  Once it was over, I was extremely happy.  I thought I was done, my headache would be fixed and life would be good again.  Once again, I miss those innocent days.

When we got home from the CT scan, there was a message saying that I needed to go for an MRI immediately.  I remember us all laughing kind of nervously, because they don't tell you what's wrong, and everyone knows the wait times for those tests.  There wasn't really enough time between the tests for us to get too worked up about it though, because my MRI was the next day.

The test was once again at the Children's.  We went in and I got changed into those insanely attractive hospital gowns and pants.  The MRI is more terrifying than the CT scan by about a zillion.  Mom took my glasses from me because the machine would swallow them and not give them back if I brought them in.  I laid down on the bed, and they proceeded to strap me in for the test.  Being that it was a head MRI, I got the camera strapping my face down, and the whole thing got locked in.  I had headphones on so I could listen to a CD, and I was handed a little squeeze thing to squeeze if I panicked.  All in all, this test was looking pretty fun!  Being that the test was quite a while ago, the simple head MRI took 45 minutes of not moving and minimal breathing.  Mom got to stand in the control room and watch.  Those tests are extremely loud, but the CD drowned it out a bit.  I'm not claustrophobic, but I needed to keep my eyes shut so that I couldn't see the metal tube a half foot from my face and the cage and camera half a centimeter away from my eyes. I got through it though, and we walked out of the hospital feeling pretty good.  I once again was pretty sure that I was going to get fixed and all would be good again.

Shortly after, I got the phone call that I had an appointment with a neurosurgeon for February of 2004.  This was only six months after my headache started.  I had no idea what was coming for me.