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 
and dx me with occipital neuralgia then after I mentioned my mom having fibro, heās like oh ya thatās what you have 
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 Iām in the grief and anger phase and I am, just feel misdiagnosed. Anyone else ???
Yeah I know how you feel if I were you I would get another opinion go to a neurosurgeon and if youāre in the Atlanta area I would go to Polaris neurosurgeon theyāre one of the best because if your symptoms are headaches and blurriness dizziness memory loss everything else we have then I wouldnāt even mention the fibroid and just let them do what they need to do to find out whatās wrong you give them any piece of little information like that and they run with it they donāt even look for the problem but they like to collect the money best of luck
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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 wonāt focus sometimes, hand weakness (almost didnāt pass grip test for work). My chiari wasnāt that big, but research has shown the size doesnāt matter itās the symptoms. And he didnāt want to investigate any more so thatās why I went to mayo where they supposedly have more experience with itā¦
Well what you just told to me sounds like you have Chiari malformation Iād go get a second opinion third opinion fourth opinion cuz it sounds like that doctor just pushed you off like you said
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Ya I want to. Have to pay off bills from the second opinion before a 3rd one. Ugh.
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Wow, RK!!! Your symptoms donāt sound much like fibroā¦ 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 ātrigger pointsā - that if you press them, they hurt more. Thing was, I hurt ALL OVER. Not just trigger points. Actually, I was diagnosed with Chiariās 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 donāt know if this symptom works on everyone with Chiariās. I want to say ātry it,ā 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.)
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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!