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Community Voices

Chairi Malformation Diagnosis

I’ve been dealing with undiagnosed issues for all my life but no one could ever figure out why I would pass out. For eleven years I had ever test except a ct and mri of my brain. Yesterday I went to the ER after passing out for the first time since being away at college. They did a CT and MRI, turns out I have Chairi Malformation.
As much as that’s great to finally know what’s wrong, it’s also horrible news. I was essentially told I need decompression surgery but my parents won’t pay for it until I get a second opinion.
I want surgery just for the slim chance of decreasing the severity of my symptoms but it’s also terrifying. There are so many things that could go wrong.
I’m also having to rethink so many things and I’m going to have to put my life on hold for surgery. I just started college, I don’t want to have to take a semester off. I may also never be a surgeon because I can barely stand for more than two minutes without passing out, I won’t make it as a surgeon.
I’m so scared of everything and I have zero support. No one in my life understands what I am going through physically and mentally.
#ArnoldChiariMalformation #ChiariMalformation #Chiari #chiari1

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Community Voices

Chiari Malformation causing tingling?

my 3 y/o daughter with Epilepsy’s neurologist just found Chiari 1 Malformation in MRI trying to find the cause of all her symptoms. EEG showed no seizures during her tingling, weakness, dizziness.
They said it’s not of concern until past 5mm. She is at 5mm but the neurologist doesn’t think it’s causing her other symptoms. But when I read about Chiari, her symptoms are all listed. I also recently found a trigger for her tingling and it was jumping on the trampoline.
Her neurologist doesn’t think it’s connected.
She gets really bad dizziness, tingling that doesn’t go away, in all different parts of her body and head, sometimes she falls so much, or will walk with a limp or drag her leg, gets so fatigued, and sometimes will just lay down trying to get comfortable, and gets weak in her legs where she doesn’t want to walk. this has been going on for over a year... anyone have Chiari and these symptoms?? #ChiariMalformation #Epilepsy #chiari1

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