So This One Time, When I Thought I Was Dying…

So after I had the “BIG” seizure (April 23, 2013… a date that I’m guessing will be burned into my brain for a long time), I had a bunch of medical tests done. MRI. EEG. More CTs. They sound scary, but you just lay there while they scan you. For the EEG, you even get to fall asleep. Extremely easy.

I have developed a strange affection for medical tests. Probably because it became clear almost immediately that they were going to be the easy set of tests associated with having seizures. Medical tests are nothing compared to the real life tests that have cropped up — how to ride the bus, how to handle seeing people for the first time after they watched you have a seizure, how to distinguish between drug side effects and your overactive imagination, how to talk to coworkers about seizures, how (and when) to tell your mother that you had another one… the list of life tests is much longer and seems to grow daily.

But I digress. We were talking about medical tests. About a week after I saw my neurologist, I had an MRI and an EEG. I actually liked both because I like being tested. Math tests, aptitude tests… I’m a big fan. So I go to my MRI. The techs are really nice. I lay on this platform that slides into a big white tube that makes hammering noises around me for 40 minutes. I spent the majority of the time congratulating myself on how non-claustrophobic I am and wondering if the weird different noises the machine was emitting were making different parts of my brain light up on the scans. Then they pulled me out and injected me with some stuff (contrast) and put me back in so they could take more pictures. One of the lab techs was a little too nice to me when they pulled me out to inject the contrast (he called me “blue eyes”) and even nicer when they pulled me out at the end of the test (he called me “princess”). Which was the first time in this process that I thought “oh no, I’m dying.” Because “princess” is something you call someone after you’ve seen a giant brain tumor on their scan, right? I don’t look like a “princess” otherwise. I look like an accountant.

So I leave the MRI and they promise to get the results to my doctor in a couple of days. Fine. I go to my EEG. Now this test I’m more excited about. Basically they put a bunch of electrodes on your head and watch the electrical activity in your brain . Usually they strap you down, but the tech said that I seemed pretty with it so she was going to skip that part (umm, thanks?).

During an EEG they flash a bunch of strobe lights in your eyes (I know, seems like a bad idea with someone who has had a seizure, but apparently strobe lights cause seizures less often than you’d think). They also make you hyperventilate (which I didn’t realize I could make myself do; bonus talent revealed). Then they have you fall asleep if you can. I didn’t think I fell asleep, but the tech said I did. At this point, I’m just assuming that my own idea of consciousness is flawed and trusting medical professionals so I’m assuming I did. When you’re done, they say the same thing–we’ll send this to your doctor and she’ll get back to you.

So I wait a few days. I’m already thinking vaguely that I’m dying because of that MRI tech’s overly solicitous “princess” stuff, but trying not to panic until I have more information. Then I get an email from MyChart. MyChart is the best thing ever. It’s an online system that my hospital (and many others) use that allows you to log in and see your test results, exchange emails with your docs, schedule appointments, etc. So much more organized that I ever would be. Anyway, it emails me and says that my MRI results are up. WHAT?! I immediately go to the site to read the report. Even though my neurologist hadn’t called me yet. Which I knew could be a bad idea, but… impulse control isn’t my strong suit and I’m kind of an information addict.

Here’s what the MRI report said (at least the way I was reading it… with the assistance of Dr. Google): We found something abnormal in her brain. It’s about the size of a pea. It’s in location X (still can’t figure out exactly where it is because the medical jargon is so incomprehensible… and does it really matter?). There are a variety of things this could be and they include the following: infection, tumor (brain cancer), lymphoma (blood cancer), vascular malformation (weird shaped vein), a weird bruise in her brain (???), and a couple other things. We recommend that you correlate the results with her CT to figure out what the heck is going on.

In summary: It said that it could be anything. But most of the things were bad. And all of them involved my brain being abnormal. Which I normally wouldn’t mind. But I prefer electrical / psychological abnormality to structural abnormality. Structurally, I would prefer to be average.

So what do you do with this information? I have no idea what you should do, but here’s what I did…

  1. Don’t tell anyone. I was freaking out enough for everyone. I’m not a secretive person (too much the opposite if anything), but I like to wait until I have real facts rather than getting anyone riled up over nothing. The exception being myself, of course.
  2. Spend the first 24 hours making a Bucket List. Sounds cliché, but it was very calming. A project I could work on so I’d be ready when the official bad news came, if it did. It was something productive to do while I waited. And I learned a lot from the exercise. It was a very different list than I would have made a few weeks earlier. I’ll post something about it another time.
  3. Reevaluate your life. I’m an accountant. I help people fix business tax problems. When you think you’re dying, you wonder if it was a good idea to spend your time on that.
  4. Develop an immediate empathy for others who have gone through real health trials. As it turns out, life doesn’t flex to allow for personal disasters as easily as you’d think. I felt like my world was stopped… I was standing on the edge of something, holding my breath… but everything was moving forward around me and I was expected to keep doing my normal life things–work, workout, eat, hang out with friends, etc. This made me irrationally angry at people sometimes. Couldn’t they see that I wasn’t breathing? Why were they asking me for things when it was already taking everything I had to hold myself together? To be fair, I hadn’t told them anything. So they couldn’t know. But I was angry anyway. I tried not to act on that anger. Besides, there’s a chance that was just the Keppra talking anyway (see future post on Keppra & irritability).

So then my neurologist finally called. After I’d spent two days quietly contemplating the idea of brain cancer. And she said (basically)… we’re pretty sure it’s a weird shaped vein (veinous malformation for those of you who like big, precise words). It’s probably been that way since you were born. We don’t know why it’s causing seizures now. But it’ll keep causing them. But you’re not dying or anything. We’re pretty sure it’s that. But there’s a little tiny chance it could be a tumor. Keep taking your seizure meds and come back in for a new MRI in 3 months and we’ll reevaluate.

To top it off, she said “Oh, and your EEG came back normal.” Which was a bummer. If someone is measuring the electrical waves in my brian, they shouldn’t come back normal. Not because I’ve had seizures, but because I’m awesome. Which should clearly show up on a test like that. So I’m assuming that what she meant was “Your EEG didn’t explain your seizures and the extreme awesomeness that we saw on your scans is not medically relevant.”

In summary:

  1. I’m not dying (probably).
  2. Just because an MRI tech calls you Princess, does not mean that you have brain cancer.
  3. EEG’s do not always show how awesome you are.
  4. Do not read your own test results when they’re posted online before your neurologist calls you. I know that you won’t be able to resist, but don’t say that I didn’t warn you.

Okay, my laptop is dying (and if you reached this point in the post, you’ve journeyed through many more words than I intended to write when I started it) so I’ll end this part of the saga here. Tune in next time to hear about what to do if you see me having a seizure (a post most likely entitled “DO NOT CALL 911 unless…”).

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2 thoughts on “So This One Time, When I Thought I Was Dying…

  1. Pingback: My Upcoming Video EEG…Have I Mentioned How Much I Love Tests? | Seized by Grace

  2. Pingback: How You Can Help Me During My Hospital Stay Next Week (If You Want To) | Seized by Grace

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