After all these years, my brain still doesn’t know that it needs to stay in my skull.

Well, if you’ve been following my tweets lately, I have received some massive news. I have been wonderfully graced with low lying cerebellar tonsils, or a Arnold Chiari Malformation. In layman’s terms, my cerebellum has herniated, roughly 6 mm out of the regular area in the brain. Weird eh?

In my most recent MRI, I had some extra fancy imaging done, a MRA and MRV, so I got the fun dye in the veins, and also was supposed to have an additional cage around my chest. So not only did they plan to put the cage of doom over my face, they also put one on my chest, THEN tightened it. Now, I am not usually claustrophobic, but after 20 minutes of the technicians trying to find a vein, and multiple botched attempts, I was already anxious and there was no way I was going into a tiny hole with a tight cage around my chest.

My past MRI was at a children’s hospital. It was a nice big machine, with lots of clearance between my face and the top of the chamber and no chest cage… Unfortunately, since I am 20, I wasn’t able to go to the same imaging centre. So I was sent two hours away from home, to a small town so I could get my scans done ASAP. The downside? The clearance between my face and the top of the chamber was miniscule. I could feel my breath return to my face on each breath and on top of that when they tried the whole chest cage, I couldn’t take a deep breath, and they said it wasn’t an option to not have it on.. Holy.. que claustrophobia..

15 minutes later of me freaking out, the cage was not required.. it just enhances photos.. all of that for nothing :/

Fast forward two weeks, I find out that my brain doesn’t know where it is supposed to be.. and maybe this means my CM is secondary, not primary.

I’ll know this week, hopefully the final answer.

It’s weird to think I could be pain free, I don’t remember what it feels like to be pain free. but I can’t get my hopes up.

Any of ya’ll have a arnold chiari? Let me know:)

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