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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What if ?…What if it’s not “Nothing”

Wow, I haven’t posted since February.. So sorry for being such a bad blogger!! I’m going to try to start being a more dedicated blogger, hope you like my newest post! Please comment below your thoughts:)!

 

If you guys have been following my twitter account, you know what’s been going on in this crazy life of mine. I had an appointment from hell with my pain management doctor, and then she did a 180 when I brought parental reinforcements to my next appointment, and started helping me again (although I’ll never trust her again).. She referred me to the ONLY headache specialist in Atlantic Canada,.. Isn’t that sad? 4 Provinces and there is only one specialist.. Anyways, I get to this appointment, and he’s 2 hours late… After a comprehensive (I mean intensive!!!) neuro exam by a flock of his students, he finally strolled in. I don’t tend to get along with old fashioned doctors, you know the kind I’m talking about, super full of themselves and its their way, or the highway when it comes to treatment. But I thought, hey, he is my only option… better suck it up and hopes he helps me. We go through my entire history, 7 years in full detail, looks at my med list and tells me “ oh my.. These are hard drugs”… Really? Thanks for noticing. We continue with on with the conversation, discussing revising my diagnosis, from Chronic Daily Headache & Transformed Migraine, but he believes I only have Chronic Migraine. Cool. We continue on, and he decides I need to do a further neuro exam, I stick my hands out in front of me and he freezes. Staring straight at my fingers, face in awe, then smiles. Now, I started to freak out a bit, because a neuro smiling at you always isn’t the greatest thing.  My fingers have always been super crocked and bendy, but whatever, no big deal right? Apparently, yes. Big deal. He starts examining my fingers, toes, and then starts trying to find other weird symptoms I have. We finish, and he decides that I need another MRI, this time with an MRA. He thinks there is either something physiologically wrong in my head, causing my hypermobility, or that I have a hypermobility disorder. So, like I always do, I went straight home and went to the Internet… Reading about a disorder called Ehlers–Danlos syndrome, or EDS. I continue reading about this condition, citing that chronic migraine is a common condition associated with EDS, I continue reading about the other associated symptoms, and I have about 90% of the most common symptoms. Now maybe this is a coincidence, as it wouldn’t be the first time this has happened… But what if?  What if all the doctors that told be I am “perfectly healthy” for the past 7 years were wrong? So going forwards, I’m waiting for my MRI/MRA, and then I will go back to him, and start again. 

 

Thanks for reading guys! Hope you all are having a spoon friendly weekend!