First nothing patters through my mind when the doctor says: “Have you heard of a Chiari Malformation? It’s very common really. Thee’s nothing to be worried about. We found it on your MRI.”
She says all of this very fast, and it slides out quickly like an eel. She sounds a little nervous, just like she is about to do a nervous sort of laugh, the sort of laugh that would be described as a chuckle on a novel or short story, and she would clear her throat here, just at this particular juncture in the conversation, to get ready for the next part.
Truthfully, I am annoyed. I had forgotten I had had an MRI, and was at work, and thought she was going to call me to ask about medication and diet changes she’d recommended, to which I was being “non-compliant.”
The MRI. Yes. A frantic Tuesday, it’s been a week, I had to take out all my piercings, and it was so fucking hot outside, all I was worried about was being in a calm, rested space so I could not tense up too much when I was in the machine. I tried not to worry too much about my new neighbor, who let me know if I saw him stumbling around, it wasn’t because he was drunk, it was because he had been freshly diagnosed with Huntington’s. Omen? No. Good luck. Only so many brain problems to go around, and I already have Bipolar Disorder.
I did all the right things. I took out my piercings. I washed up. I wore clean underwear. I did not eat or drink fluids for at least two to four hours before I for I got to my appointment. I arrived early enough to fill out all relevant paperwork. I read O Magazine, the proper choice for my gender and body presentation out of the selection offered.
When I got into the machine, I did not move, as told, even when it was so loud it scared me. I did not move when my hands got too hot from the pulsating magnets just behind the plastic tomb. I tried to sleep, as they instructed.
I left, and thanked them as a good girl does. And I forgot all about it.
Until this doctor interrupted my very normal Monday morning.
She rushes on: So you will need another MRI. Sometimes this Chiari Malformation can lead to fluid build up that would make all of the medications we put you on not work. It means that part of your cerebellum is jutting down into the spinal column, and it builds up pressure in your brain. This would change the course of treatment. This is a congenital malformation, you got it at birth. So is that second MRI ok with you? Did you hve any questions? No, Ok then, have a good day.
A few seconds later, I text this information to N.
And I sit for a few minutes and think.
I think of nothing. I think of driving around town. I think of getting ice cream. I think of bubbles. I really think of nothing.
N and I have a joking conversation about the diagnosis. I’m not sure her mind goes as quickly to where mine goes when it eventually starts turning. Mine goes blank to protect me from where it is begining to roil:
Fluid on the brain.
That’s not good.
Pressure on the brain.
Also not good.
What do they do for that?
Surgery probably.
She wants another MRI. They must be looking for that fluid. Or something.
Surgery. Brain surgery? WTF. I can’t have brain surgery. I’ve started a new job, I have no family now, I’m in graduate school and I’ve already spent too much in loans to quit, I have a new puppy, N deserves better for about 8,000 reasons, I’ll be broke and lose my home and my car, it won’t work, and I’ll have to heave repeat surgeries, and your relationship will turn into one of inegalitarian pity, and, and, and.
And then I think, maybe I wouldn’t need surgery. But I would need constant checking. I will always need to be careful of my head and neck. I’ve already taken enough blows to the head, neck and shoulders — and engaged in neck adjustments with Chirporactic care, that I probably triggered my condition symptomatic. And there would be constant pain anyway. I’m already in back pain, face pain and head pain daily. Some days are worse than others, and now that this has started, it probably will progress. Which is what will happen if don’t have surgery.
So I call the doctor back with my questions.
She is angry I’ve called her back on a private line. I hit redial on my cell, got her directly. She answers my questions, and informs me my condition is not that impressive. She rarely refers patients to surgery. She lets me know I should have a good day. She hangs up.
I don’t know where to turn. My MRI is on Tuesday. I imagine they are looking for a Syrinx, or Syringomyelia. The piercings will come out again. I’ll be clean and prompt, laying flat and still for the magic picture machine to image my insides.
I don’t know what my life holds anymore. Vacations? Work? Disability? School? Raising a dog? Health Insurance? Debt? Owning a home? My life is a leap from diagnosis to diagnosis, zigzagged and without a purposeful meaning. And while this diagnosis the newest and fanciest of the lot, this is just a drop in the bucket of derailmets my body has given me to what I had wanted for life. I don’t want for life anymore. I wait for it.
A Flight of Ideas 
AnnieMcPhee said,
July 23, 2008 at 2:12 am
I’m sorry she was insensitive, and what a jolt that must have been – it SOUNDS horrible. But, if she’s not worried, maybe there’s good reason for that. Maybe all your dire predictions will come to naught there. My sincere hope is that that is the case. All the best to you; sometimes it’s that damn worry that makes things so much worse. 😦
katie said,
July 23, 2008 at 8:03 am
Well, my first thought is you need a new doctor! One who won’t blow off your entirely legitimate questions and concerns about a scary sounding condition. I’m sorry you had to find out that way. I would try to take comfort in the fact that, since you’ve had this since birth, and there haven’t been extreme issues in that time, maybe it will continue to be a minor inconvenience. Hopefully you will know more after the next MRI. And maybe your doc will attempt some tact. But seriously – new doctor!
Bri said,
July 30, 2008 at 3:57 am
I agree with katie (above), my first thought was f*cking insensitive doctors…you need a new one! But Annie does have a point, insensitivity aside, if it was something really dramatic doctor would probably be more into it. Let’s hope that is the case anyway. Much with the calming vibes.