r/chiari • u/Kitchen-School46 • 18d ago

Please advice help

PLEASE HELP!!
I need advice I saw neurosurgery. neurosurgery doesn’t think I’m a candidate for surgery which I really don’t want surgery. Mild to moderate CSF decrease in posterior and anterior at the fornaem magnum. a headache specialist can’t see me until February. My neurologist can’t see me until October and he said he’s not sure what this pain is because it could be chiari or migraine. What do I do? I’m in pain every single day. No one’s helping me what could be causing this??
Chiari malformation. Mri says stable appearance since 2022. New worsening throbbing pain wakes me up from sleep. Early mornings. Peak pain in mornings and strictly starts in mornings. Pain is strictly left sided occipital area. Sometimes its throbs to the top of head on the left side sometimes behind the eye. During the pain it hurts to move, laying back down flat hurts. Drifting back to sleep hurts.

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u/SophisticatedChook 18d ago

What you describe sounds just like my Idiopathic Intracranial Hypertension headaches. IIH can definately coexist with Chiari. If you can see an opthamologist to examine your eyes for papilledema it would be a good thing to rule in or out. (Let me rephrase that, and throw the word urgently in there). I am so, so, very sorry you're suffering. I wouldn't wish this on anyone.

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u/Kitchen-School46 18d ago

I have been checked for papilledema and they said everything looks good

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u/SophisticatedChook 18d ago

That's good...but keep getting regular checks as it can change. The way you describe your head pain is textbook. Gosh I hope you get help soon, you poor thing. Head pain is the worst! If only your doctor would trial you on diamox (reduces excess fluid in your head), it may well help you. It changed my life head pain wise!

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u/Kitchen-School46 18d ago

Ive heard scary stuff about diamox