I remember a few things from the first couple days in the ward. The faucet was dripping in one of the rooms, and I woke up just long enough to tell them to tie a face cloth from it to the bottom of the sink. They did and it stopped, and I was immediately back to sleep. Another thing I remember was the menu. They gave us the meal menu every morning, and we always optimistically filled the whole thing out, even though we knew I wouldn't be able to hold anything down except water. Someone had given me a fruit basket as a get well present (which was really nice), but my sense of smell was ridiculously heightened, and I couldn't take the smell of the banana. I had to get my parents to take it out of the room.
As the days went by, I got progressively better. I still threw up everything, and every time I did my headache would get so bad that my skin would go bright white, then bright red, and I'd have to tense all my muscles because it was the only thing I could do against the pain. I could hold water down pretty well usually, except for one night where they gave me too much codeine and the water came back up, still cold. One night I had watermelon and it stayed down, so I got super excited about it and had a ton, and then threw it all back up again. I couldn't eat watermelon for years after, and I still get a little cautious when I see it.
My mom slept in a chair beside my bed every night except for one. That night my dad stayed, and got so angry at the nurse (actually, this was the night of the codeine incident), set her straight, and then sat down and watched over me like an angry wolf watching over its cub. It was pretty funny. My entire family was there a lot, even Kyle, who was in grade 12 at the time. I had a couple of people visit me, including my family doctor and my grandparents. My friends, however, didn't come once, and didn't even try to contact me until I was well enough to check my phone and text them to tell them I was alive. Even then, they decided that was good enough and they didn't need to visit me.
One of the highlights of my stay in the hospital that time was when a volunteer brought a laptop in for me. I was super into The Sims at that time (I hadn't heard of WoW by then) and so I actually sat up for the first time for about 15 minutes so I could play it. This was probably about day 5. It was a really big step for me, and after I said I was done I laid down completely exhausted. The next day the nurse told me I was going to try to walk. I was pretty against it, but she pretty much dragged me out of the bed and helped me walk around the room once. I can't even describe what the headache felt like after that. I've never had a migraine that's come close to the pain, so I don't really know what to compare it to. After that though, I felt confident that the back of my head wouldn't explode when I got up, so I was ready to do more.
One of those days, my neurosurgeon came in and said that the surgery went well, and the nausea was because of that portion of my brain being too low. He said he was pretty sure that my headache would go away soon, and if it didn't, they might need to depressurize some of my brain by putting a shunt in the side of it. Neither of those things happened.
We were really wanting me to get home. That kid that was in ICU with me that had the same surgery was gone after 4 days, and he was doing awesome. On day 9, Mom got the nurses to feed me enough gravol to knock me out for 8 hours. Every so often, she'd wake me up and shove some vanilla Boost into my mouth, and then would let me go back to sleep. I wasn't awake long enough to throw it up, so by the end of the day I got two Boosts in me, which was enough for me to go home.
Car rides home from the hospital are always hell. We put me in the front seat of the car that would eventually be mine, the Opaz. My parents handed me an ice cream bucket and shoved blankets on top of me, and off we went. I managed to keep my stomach in me the whole way home.
To sum this part of my life up, I went into the hospital expecting about a 4 day stay, to stay steady at 117lbs, and to be headache free when I left. I was in there for 9 days, lost 11 lbs, and had a headache worse than when I went in. However, I was alive, and therefore I count this surgery as a success.
Showing posts with label brain. Show all posts
Showing posts with label brain. Show all posts
Thursday, July 14, 2011
Tuesday, July 12, 2011
Why Are There Scars On The Top Of My Head?
Before we get into the next part of this story, I'd like to tell you a little bit about the social side of my life up to this point. As I said before, I had a pretty tight group of friends. We became friends at the start of grade 10. For the purposes of the story, I'm not going to mention their actual names. I don't need anyone I used to know getting mad at me.
By the time spring break rolled around, my headache was about a ten out of ten on the pain scale (or at least what my pain scale used to be). This meant I spent a lot of time at home in too much pain to go to school. When I was there, my friends were pretty supportive. One would offer me random pills out of his pill collection, of course in exchange for my own Tylenol 3's (I never took that offer), and another told me she was going to pitch a tent in my hospital room and would camp there for the four days I was supposed to be admitted. I felt pretty good about them being there for me. Before I went in for my surgery, I decided a bunch of my friends should go to Tony Roma's for a supper party kind of thing. I made invitations, and titled it The Last Supper (something no one else seemed to find funny, but personally I still find hilarious). Everyone came from that group of friends and another group of friends I had, and it all went great. The day before the surgery, I promised to let everyone know as soon as possible and told them that if they asked at the front desk, they would tell them what room I was in. I also told them I'd check my cell often while I was in there. They all promised I'd talk to them soon.
On the day of the surgery, Mom, Dad, Kyle and I walked into the Children's hospital and went to the second floor: Day Surgery. They asked if I'd been sick in the last two weeks, and Mom quickly said 'Nope!' which was a flat out lie. I'd had a cold which had just finished the day before. The four of us sat down among the children and their families, and we started playing Cribbage. One thing about crib, not to toot my own horn, but I'm pretty much the best person at it ever. Just kidding. I'm pretty good. Kyle hasn't played it a ton, so we had to teach him how to do it. Then we played team crib.
After an hour or two, they finally called me to get changed, once again, into the awesome hospital outfit that ties at the back. We then sat down in the closer waiting area and they asked the usual questions. They told me I was getting put under by gas, which I'd heard isn't as quick (it isn't, but it's a hell of a lot more fun). Then we played more crib. My family and I are extremely close, and this was one of those times that really stands out in my mind when I think of how awesome they are. When it comes down to the hard parts of my life, my family is always going to be there for me.
Finally it was time for me to go in. I said my goodbyes, assured them I was going to be okay, and walked into the operation room with a big brave smile on my face. I climbed up on the bed, and the nurse who's sole purpose at the start is to make sure I don't freak out and run for my life introduced herself to me. I didn't get any IV's or anything at this point, they were going to wait until I was under (something a lot different then how they do things now). They asked me to say my name and birthday, and then strapped the mask on me. The nurse started telling me lame Disney jokes, which I found quite hilarious. Then I started up a conversation with her about how white the room was. And then I told her I was going to take a nap. That's all I remember, officer.
If you're squeamish, you may not want to read this part. While I was unconscious, they drilled a brace around my head to hold it steady, and then flipped me over so I was looking down. They shaved a one inch wide strip up the back of my head about six inches ish long, and then cut from halfway up my neck to halfway up my head. To get to the part that they needed, they had to remove a 2.5 cm x 2.5 cm piece of skull, which is still gone now. They cut through a bunch of muscle and stuff as well. Because the tonsil was so big, they had to shave off part of my first vertebrae to get to it. They then burned the tonsil down to how big they wanted it, and inserted a plastic graft to prevent it from getting bigger. Part of the nausea part of my brain had actually shifted down too, so they had to "tinker" with it to put it back where it was supposed to be. Then they sewed and stapled me back up.
From here it gets a little hazy. I remember bits and pieces of the next few days, but the timeline is a little screwed up in my mind. A lot of this part is off of what I experienced mixed with what I was told from my family.
I'm told I was in ICU for a few days. I don't remember even being there for an hour. I had a window beside my bed apparently, and I was in the corner of the room. Every time I laid on one side for a while, the other side would swell up and I would have to roll over. I threw up extremely often, and wasn't awake for a lot of it. There was a kid one bed over from me who had the same surgery; he was in there for the allotted day and then left. Good for him, and that taught me that I should never judge my health against someone else's. I remember waking up one night and telling the nurse I needed to throw up, and she pretty much hit me in the face with the tray thing while she was looking away and yelling at a different ICU nurse. That's actually the only thing I remember in ICU, the time went by pretty quickly for me because I was unconscious for so much of it. Kyle wasn't allowed to visit me there, I think only one or two people were allowed to come in, and my parents were beside me every second they could be.
Eventually I got moved into the neurosurgery ward. I don't remember the trip over, but Mom does and I guess she was over me like a hawk. This paragraph is from what she told me. I was in this room with a girl, maybe named Sophie. She had Chron's disease or something, and she was termed a "frequent flier," something I was also called shortly after. Mom said that she was pretty sick. Apparently a while after my brain surgery we were in the MRI/CT/Ultrasound part of the hospital and we saw her, and I started crying because she wasn't better yet. Thinking about it now, even though I don't really remember all this, I still get pretty choked up. I hope she's better now, and I hope she managed to beat the terrible cycle we both were in.
By the time spring break rolled around, my headache was about a ten out of ten on the pain scale (or at least what my pain scale used to be). This meant I spent a lot of time at home in too much pain to go to school. When I was there, my friends were pretty supportive. One would offer me random pills out of his pill collection, of course in exchange for my own Tylenol 3's (I never took that offer), and another told me she was going to pitch a tent in my hospital room and would camp there for the four days I was supposed to be admitted. I felt pretty good about them being there for me. Before I went in for my surgery, I decided a bunch of my friends should go to Tony Roma's for a supper party kind of thing. I made invitations, and titled it The Last Supper (something no one else seemed to find funny, but personally I still find hilarious). Everyone came from that group of friends and another group of friends I had, and it all went great. The day before the surgery, I promised to let everyone know as soon as possible and told them that if they asked at the front desk, they would tell them what room I was in. I also told them I'd check my cell often while I was in there. They all promised I'd talk to them soon.
On the day of the surgery, Mom, Dad, Kyle and I walked into the Children's hospital and went to the second floor: Day Surgery. They asked if I'd been sick in the last two weeks, and Mom quickly said 'Nope!' which was a flat out lie. I'd had a cold which had just finished the day before. The four of us sat down among the children and their families, and we started playing Cribbage. One thing about crib, not to toot my own horn, but I'm pretty much the best person at it ever. Just kidding. I'm pretty good. Kyle hasn't played it a ton, so we had to teach him how to do it. Then we played team crib.
After an hour or two, they finally called me to get changed, once again, into the awesome hospital outfit that ties at the back. We then sat down in the closer waiting area and they asked the usual questions. They told me I was getting put under by gas, which I'd heard isn't as quick (it isn't, but it's a hell of a lot more fun). Then we played more crib. My family and I are extremely close, and this was one of those times that really stands out in my mind when I think of how awesome they are. When it comes down to the hard parts of my life, my family is always going to be there for me.
Finally it was time for me to go in. I said my goodbyes, assured them I was going to be okay, and walked into the operation room with a big brave smile on my face. I climbed up on the bed, and the nurse who's sole purpose at the start is to make sure I don't freak out and run for my life introduced herself to me. I didn't get any IV's or anything at this point, they were going to wait until I was under (something a lot different then how they do things now). They asked me to say my name and birthday, and then strapped the mask on me. The nurse started telling me lame Disney jokes, which I found quite hilarious. Then I started up a conversation with her about how white the room was. And then I told her I was going to take a nap. That's all I remember, officer.
If you're squeamish, you may not want to read this part. While I was unconscious, they drilled a brace around my head to hold it steady, and then flipped me over so I was looking down. They shaved a one inch wide strip up the back of my head about six inches ish long, and then cut from halfway up my neck to halfway up my head. To get to the part that they needed, they had to remove a 2.5 cm x 2.5 cm piece of skull, which is still gone now. They cut through a bunch of muscle and stuff as well. Because the tonsil was so big, they had to shave off part of my first vertebrae to get to it. They then burned the tonsil down to how big they wanted it, and inserted a plastic graft to prevent it from getting bigger. Part of the nausea part of my brain had actually shifted down too, so they had to "tinker" with it to put it back where it was supposed to be. Then they sewed and stapled me back up.
From here it gets a little hazy. I remember bits and pieces of the next few days, but the timeline is a little screwed up in my mind. A lot of this part is off of what I experienced mixed with what I was told from my family.
I'm told I was in ICU for a few days. I don't remember even being there for an hour. I had a window beside my bed apparently, and I was in the corner of the room. Every time I laid on one side for a while, the other side would swell up and I would have to roll over. I threw up extremely often, and wasn't awake for a lot of it. There was a kid one bed over from me who had the same surgery; he was in there for the allotted day and then left. Good for him, and that taught me that I should never judge my health against someone else's. I remember waking up one night and telling the nurse I needed to throw up, and she pretty much hit me in the face with the tray thing while she was looking away and yelling at a different ICU nurse. That's actually the only thing I remember in ICU, the time went by pretty quickly for me because I was unconscious for so much of it. Kyle wasn't allowed to visit me there, I think only one or two people were allowed to come in, and my parents were beside me every second they could be.
Eventually I got moved into the neurosurgery ward. I don't remember the trip over, but Mom does and I guess she was over me like a hawk. This paragraph is from what she told me. I was in this room with a girl, maybe named Sophie. She had Chron's disease or something, and she was termed a "frequent flier," something I was also called shortly after. Mom said that she was pretty sick. Apparently a while after my brain surgery we were in the MRI/CT/Ultrasound part of the hospital and we saw her, and I started crying because she wasn't better yet. Thinking about it now, even though I don't really remember all this, I still get pretty choked up. I hope she's better now, and I hope she managed to beat the terrible cycle we both were in.
Monday, July 11, 2011
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.
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.
Sunday, July 10, 2011
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.
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.
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