The Chiari Chronicles

Origins - Part Three Point Five (or "How to Have an Amusing Hospital Stay in Three Easy Steps")

2011-07-22T00:38:00.001-04:00

And here it is, the much anticipated post-surgery bonus story (if it seems familiar, that's because it was posted on this site before I shut it all down and restarted. So, anyone who may have already read this, sorry! This version has been slightly edited though, so...):

A little while ago my mom, sister and I somehow got onto the topic of my craniotomy. I only remember bits and pieces, obviously, but my mom told me something that I find really...weird.

Let me start at the beginning. When I first woke up, I was in intensive care. They brought my mom and sister in to see me, which I don't remember. All I would say was "It hurts" and "I want to roll over" (they had just cut the back of my head open and I was laying on my back!), which I do remember. I also remember getting frustrated, grabbing the bars on the right side of my bed and pulling myself onto my side, which really freaked the nurses out because I had so many monitors attached to me.

Anyway, some doctor (I have no idea who) came in to do a basic neuro test on me (you know, the old touch your nose then touch my finger deal). Apparently I would put my finger somewhere in the vicinity of my nose and then wave it around wildly getting nowhere near his finger (I guess I figured, eh, close enough). Obviously, it freaked my mom out. And the doctor wasn't thrilled either.

So the doc asked what pain killers I was on and found out they gave me some heavy duty stuff that they weren't supposed to give me until after he checked me. False alarm everybody! The girl's not brain damaged! They took me off the meds and he came back a little later to check me again. I'm pretty sure I passed (I assume. No one ever actually told me, now that I think about it...).

And here is where it gets interesting. I don't remember this at all. My mom was there and told me about it later. I am someone who, at the time, had no interest in politics at all. At all. I can't emphasize this enough. If you had asked me at any point prior to my surgery who the vice president of the United States was, I would have said "No clue". But apparently, if you knock me out, do a little surgery, hop me up on pain killers and then ask me the same question? According to my mom I will promptly answer "Dick Cheney" (which was correct at the time, I am well aware it is no longer correct now).
When she told me later I responded with a somewhat garbled "What the--?" (still on pain meds at this point) because I knew I didn't know that.

One other fun memory that I actually do remember was my battle with the blood pressure cuff. I have chronically low blood pressure. So even though I got bumped down to critical care on the first day, I never made it to an ordinary room. I was also on a blood pressure monitor 24/7. Which gets really annoying, really quick. My mom, who they very kindly let stay with me (breaking the rules), had to constantly stop me from ripping the stupid thing off (breaking more rules). So eventually, I, in my drugged up stupor, tried to convince her that I didn't need it, it wouldn't go off anymore, they said it was ok to take off, all mashed into one insane sentence. Then I ripped it off, rolled over, and went back to sleep (rebel!). Two minutes later, the alarm goes off because it tried to take my blood pressure and failed, for obvious reasons. My mom still refuses to let me live that down and I still hate that thing.

Let me just round this all out by saying I was out of the hospital in three days (awesome) but managed to get a horrible sinus infection about a week later (recovering from brain surgery and a sinus infection? SCORE!).

(Coming Soon - Part 4 [I promise, it'll be the last part!]: In which I get another new diagnosis and I sum up the last two years of my life in a few paragraphs)

Origins - Part Three (or "I'm Sorry For All of the Big Words!")

2011-07-22T00:13:00.000-04:00

Now that my summer class is over (still waiting on my grade though ::grumblegrumble::), perhaps I can update with a little more regularity (providing I don't stab myself in the eye again). And thus I bring you, part three of my epic adventures to find a diagnosis:

After our adventures with Dr. A, my mom decided she was done screwing around and called Johns Hopkins. So in August of 2007, I met my new neurologist, Dr. M. After discussing my symptoms, he took a look at the MRI images we had brought (which had been previously ordered by Dr.A). He said he wanted to send me for extra tests because he thought he saw something on the MRI, but it was hard to tell. And off I went to have a cine flow study (I'm pretty sure I was claustrophobic by time it was over). Back we went to see Dr. M and the new study confirmed his suspicions. I was officially diagnosed with Chiari Malformation.

Well, kind of. See, Chiari Malformation is identified by a number, which is assigned by the degree in which your cerebellum has descended into the foramen magnum (this is a very simplified explanation - for more information, please visit the NINDS website). The further the cerebellum is descended and the more severe the complications, the higher the number, ranging from I to IV. The type I was diagnosed with, however, was Type 0. Type 0 is still being debated by neurologists/scientists/people-who-decide-these-things on whether it should be considered a real classification or not. With Type 0, the cerebellum has descended, but not far enough to warrant a classification as Type I. However, the cerebellum still causes a blockage of spinal fluid flow, which results in the typical symptoms associated with Chiari Malformation. In my particular case, the cerebellum had moved more outward instead of downward, so it was causing a decent blockage of spinal fluid flow, but was not descending into my spinal column.

Wow, that was a lot of technical information. I'm going to try to avoid that as much as possible in the future, I promise.

Anyway. New diagnosis: Chiari Malformation Type 0 (borderline Type I). Due to my symptoms and the results of the cine study, I was referred to a neurosurgeon (Dr. H) and scheduled for neurosurgery in December. As in, four months later.

I remember very, very little concerning the surgery, so next post will skip right on ahead to the post-surgery story I promised (in case you forgot: "in which I scare the hell out of a doctor and prove myself to be more politically savvy than I realized") so it should be much more amusing than this post. And to make up for my lack of posting, it'll be going up as soon as I finish this post! You're welcome.

Origins - Part Two (or "I'm Blind!")

2011-07-07T21:31:00.001-04:00

In honor of the eye doctor telling me this morning that my eye has healed perfectly (woo!), I give you part two of my epic adventures (which also has much to do with eye doctors).

In 2006, after years of dealing with daily migraines and after a night of way too much laughter (I blame my sister and her then-boyfriend [now-husband]), I ended up in the ER.

Which prompted my trip to the Jefferson Headache Center in Philadelphia. My doctor there, Dr. A, sent me for an MRI, but seemed pretty convinced he already knew what the problem was by the end of our first meeting. At our second meeting [EDIT: after a lumbar puncture that took place on my 21st birthday - fun!], he said my MRI was normal and diagnosed me with Idiopathic Intracranial Hypertension (IIH).

Thus began the "tour of medications". Nearly all of them would knock me out for 24 hours straight (so it was always a choice between pain or sleeping through the next day), at least one caused me to jitter like an over-caffeinated chihuahua, and one caused (minor) hallucinations. I admit I called him rather frequently due to side effect concerns. I would also like to take a moment to admit that from day one I was not thrilled with Dr. A and I asked the Headache Center (after seeing him for a while to see if, perhaps, my first impression was wrong) to assign me a new doctor. They refused (they had a rule against it). However I was afraid to stop going to the Headache Center because that was were I got my diagnosis and I honestly didn't know where else to go.

And then, in 2007, Dr. A increased 2 of my medications rather drastically at the same time. Approximately 3-4 days later, I lost my vision.

I would like to take a moment to explain what I mean by losing my vision. I wasn't completely blind. Everything was incredibly blurry. I could see colors, but shapes were very indistinct. It was as if everything were underwater. Following trips to Wills Eye ER, my neuro-ophthalmologist, and my regular ophthalmologist, nobody could find anything wrong with me. Until my mom finally put two and two together, googled the side effects of the two medications I had increased and found out they both cause visual problems. I cut back the meds and, lo and behold, my sight returned. So, I called my doctor (I figured he'd want to know, right?). And he informed me that I should find a new doctor. Nice.

(Coming Soon - Part 3: Where I find another new doctor, get another diagnosis, and have surgery [plus my post-surgery story, in which I scare the hell out of a doctor and prove myself to be more politically savvy than I realized])

**Please take a moment to read the disclaimer at the bottom of this blog**

My Eye! My Eye!

2011-07-03T20:38:00.000-04:00

I'm a moron. I am currently typing this with my left eye squeezed shut because I AM A MORON.

I poked myself in the eye with a fiber optic.

No, you read that correctly. My brother (who is multiply disabled and wheelchair-bound) has a fiber optic wand that lights up and changes colors. Picture the kinds of things you get in an amusement park at night.
Actually, no, I'm going to find a picture of this sucker, so you know what kind of evil I was dealing with (read: how stupid I was).

Here we go:

Via flashyblinkylights (I really shouldn't give these guys free advertising considering what just happened, but I'll admit these wands are pretty cool looking in person and it was my own damn fault).

So. My brother asks me to turn the thing off. I pick it up, hold it in front of my face and double check that he wants it off. When he says yes, I turn my head and proceed to poke my self in the eye with one of the fiber optics.

OW.

Mini Update!

2011-07-03T12:09:00.001-04:00

Part 2 of my epic Origin Story is on hold temporarily. I'm hoping to get it up later today, but it might have to wait until tomorrow or Tuesday. This weekend is unusually busy for me (attended 2 barbecues yesterday - I'm still counting up my mosquito bites - have another one today and a fourth tomorrow, plus the excessive amounts of homework my summer class teacher found necessary to assign during the holiday weekend), so I've made a deal with my brain that if it doesn't try to kill me at any point during the weekend, I won't complain the next inconvenient time it decides to send me to the ER (so far, it's holding up it's end of the deal moderately well).

In the mean time, please enjoy this picture I found via Super Punch:

The artist is Byron Eggenschwiler and he created it for a Discover Magazine article about chronic pain. For more info and links, check out Super Punch's original posting.

And if I don't get around to posting Part 2 until Tuesday, Happy Fourth of July! (for the Americans) and Happy Monday! (for everyone else).

Origins - Part One (or "How My Migraines Were My Own Fault")

2011-07-02T12:08:00.001-04:00

I figure the best place to start this blog is at the beginning, as loath as I am to relive it. So, without further ado, here it is - my story (part one!):

When I was 13, I started suffering from migraines (I still remember my first migraine ever, and I recall thinking that I never wanted to experience anything like it again - HA!). So my mom took me to my then PCP. First order of business was allergy testing. Turned out, I was allergic to everything. So that was a good call. Unfortunately, the allergy meds didn't stop my migraines. So, the next step was checking my eyes (I happen to be near sighted and wear glasses). Again, probably a good call. My eyes were fine and I wore my glasses all the time, so, not the cause. That's when things started to get sketchy. "Maybe she's depressed" (I'll admit, years later, I was diagnosed with depression - but it was most likely a result of living with my condition, not the cause) followed by my favorite of all: "She's making it up" (SERIOUSLY).

That's when we decided to find a specialist. My mom was currently seeing a local neurologist for other reasons, so she took me to see her too (Dr. S). Without running any tests or scans, she diagnosed me with chronic migraines (which I suppose is kind of true). She put me on Topamax which cut down on the frequency of the migraines and she told us that was the best we could hope for. I continued to see her until she scared the crap out of my mom with a misdiagnosis. My mom found a new doctor and my migraines were tolerable on medication, and we didn't expect anything to change.

(Coming soon - Part 2: Where my brain tries to kill me, I get a new diagnosis, and I go blind!)