GET A SECOND OPINION!

TLDR; misdiagnosed with classic chiari, discovered after 3 years that it is pseudo chiari and brain sag. decompression surgery would have made me worse

i've posted on and off in this sub for the last 3 years after getting diagnosed with chiari. i believe one of the last times i posted was about getting my surgery date. well, i did NOT have my surgery

it felt like every step in this process has been hindered in some way. took a year to be diagnosed because i got the typical "you're fat and anxious." once i pressed for brain imaging because i thought i had MS, it turns out i had a 12mm herniation

the neurosurgeon i was referred to off the bat only does a handful of chiari surgeries a year, so i decided i need to speak with a specialist

took me over a year to get into the specialist. they needed a different brain MRI, a CSF flow study. there was a miscommunication where the MRI referral would be sent, they never sent it, told me to ask my previous surgeon to order this MRI. 8 months of calling and checking on the status of the referral before my previous surgeon told me since i was no longer a patient they couldn't order the MRI and i had to talk to my primary.

primary didn't know how to order my MRI. another 3 months of trying to work it out with her.

in that three months, i reached out to my original neurosurgeon again. he was willing to do the surgery off the bat, and my symptoms had been progressively getting worse to the point where i couldnt walk for more than 30 seconds. i needed to get the surgery done because i couldn't suffer like this any longer. after one appointment and no more follow up imaging i was scheduled for a decompression

my primary didn't give the go ahead during the pre-op screening. thought it was too risky because of cardiac symptoms that i need more testing for.

at this point it really felt so hopeless until i got a call that i was ready to schedule my CSF flow study. i did it, and finally got to see the specialist

and i don't have classic chiari. i have pseudo chiari and brain sag, and likely a csf leak that was caused by a back surgery i had in 2021

i had countless doctors, one being a neurosurgeon, look over my brain imaging and they did not catch the brain sag. once it was pointed out to me- both in my original MRI and the CSF flow study- i thought to myself "wow, there really is a lot of empty space in there, how did no one catch that?"

if i were to have decompression surgery, i would be worse off. my brain would sag further.

chiari alone is already misdiagnosed so often. there are likely people in a similar situation to me where someone caught the chiari, but missed the brain sag. so please, before you get decompression surgery, have the CSF flow study done. ask your doctor if they see any brain sag. if everything i mentioned didn't go wrong for me in the most perfect way, i would be worse off than i am now.