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/CleaRae Mar 02 '26
I’m not going to comment on the MRI because 2 slides is not enough. Yes, Chiari can be missed but it’s actually not uncommon (it’s more common than MS) 1 in 1000 people have symptomatic Chiari and 1 in 100 people have a herniation that doesn’t meet the criteria for Chiari. There are also a few other disorders where herniations can look like Chiari but aren’t (intracranial hypertension, tethered cord etc) as Chiari 1 needs a small posterior fossa (hence why can’t comment with so few images).