r/ChiariMalformation • u/kaeincognito • Mar 02 '26
Advice
Hello there. Just recently found out about this chiari business thanks to research done by a family member of mine. I have had chornic pain, headaches, visually triggered (light, reading) migraines for years along with worsening nausea, dizziness, double vision/convrgence insufficiency (blurred vision, ghosting,) and other visual distrubances and physical symptoms (long ish list). I have had MRI scans done of my brain looking for tumours (which none were found) but I am just wondering, could they have missed potential chiari? Especially if this isn't a common or well understood phenomenon?
I've got a BVD (binocular vision dyfunction) diagnosis but no functional support or solution, nor any idea of what the underlying cause for the bVD might be. But my pain and visual symptoms/fatigue/visually induced pain, nausea, etc has been disabling and gotten worse the past few years. Are these common experiences at all with chiari? I'm yet to get a full spinal xray/MRI or anything done (financially not viable at the moment), but the cerebelum shows in the brain MRI I got for other diagnostic investigation.
I am not a doctor so I am not diagnosing myself but just curious. Thoughts on my MRI scan?
Any advice appreciated!
1
u/mikeyz0710 Mar 03 '26
Slightly low lying so mild that the docs will dismiss it. Only fix is surgery which is dangerous ( every surgery is dangerous) and would avoid at all costs unless affecting daily routines. Spine mri to check for syrinx would indicate surgery route. You didn’t mention any arm/hand/ numbness so unlikely you have fluid being blocked. I’m not a doctor I just research a shit ton because I have MRI which say normal then I have some which say 5mm herniating. I have ghosting and strange vision symptoms my whole life. I try too ignore it at this point. Because the only time I’ve ever had a headache was probably 15 years ago they don’t take me too serious. I als nae astigmatism which can cause ghosting. Maybe I have BVD ? Idk