Chiari Online Support Group

Chiari or fibro? Getting brushed off


#1

I was found to have a Arnold chiari malformation, has similar symptoms and often gets misdiagnose; drs here were no help so i went to mayo clinic because they have all this research for it. He said my symptoms were not the chiari at all :roll_eyes: and dx me with occipital neuralgia then after I mentioned my mom having fibro, he’s like oh ya that’s what you have :poop: and sent me to a fibro clinic. Feel like I went there, spent a lot of money, for him to just brush it off. Idk. Mom says I’m in the grief and anger phase and I am, just feel misdiagnosed. Anyone else ???


#2

Yeah I know how you feel if I were you I would get another opinion go to a neurosurgeon and if you’re in the Atlanta area I would go to Polaris neurosurgeon they’re one of the best because if your symptoms are headaches and blurriness dizziness memory loss everything else we have then I wouldn’t even mention the fibroid and just let them do what they need to do to find out what’s wrong you give them any piece of little information like that and they run with it they don’t even look for the problem but they like to collect the money best of luck


#3

Ya I originally went to a neurosurgeon, it was his very first day, and he said my symptoms were not from chiari. I was neck pain, headache that usually starts at back of head, feels like head is going to explode, dizziness, burning at back of head and down neck, pressure with valsalva, fullness in head, ringing in ears, spacey brain, eyes won’t focus sometimes, hand weakness (almost didn’t pass grip test for work). My chiari wasn’t that big, but research has shown the size doesn’t matter it’s the symptoms. And he didn’t want to investigate any more so that’s why I went to mayo where they supposedly have more experience with it…


#4

Well what you just told to me sounds like you have Chiari malformation I’d go get a second opinion third opinion fourth opinion cuz it sounds like that doctor just pushed you off like you said


#5

Ya I want to. Have to pay off bills from the second opinion before a 3rd one. Ugh.


#6

Wow, RK!!! Your symptoms don’t sound much like fibro… but full fledged Chiaris! I was diagnosed off & on with fibro - and what kept eliminating the fibro was that fibro-folks are supposed to have nine “trigger points” - that if you press them, they hurt more. Thing was, I hurt ALL OVER. Not just trigger points. Actually, I was diagnosed with Chiari’s by a Chhronic Fatigue Specialist. It told her about a very odd occurrence; I had tipped my head straight backwards to try to catch a toy that went flying directly over my head - and I passed out! The Dr. put two and two together; the oozing brain had completely cut off my spinal cord when I had tipped my head backwards in such an exaggerated manner. I don’t know if this symptom works on everyone with Chiari’s. I want to say ‘try it,’ but I have no idea if this tipping head thing would knock out any and all Chiarians. (I should apply for multi-million dollar research and find out! Ha.)


#7

Ya I had some of the trigger points, mostly just the ones in my neck but not really the other ones
Ya that sure gives me a head rush if I do that!