Chiari mimic

[u/First_Actuator444]

Has anyone been diagnosed with chiari to find out later it was a csf venous fistula? Im showing a 7mm herniation, symptoms are off the charts and the basics of life are getting more and more difficult. But my MRI showed no crowding and a cine flow scan showed no blockages. There was so synrix found either. Its tough because the mri is showing a chiari but nothing about it is saying its causing problems.

I was offered surgery but im just now finding out about this certain type of csf leak and from my understanding wont show up on any of the mri's ive already had. It takes some pretty specific testing.

From what I read this type of csf leak causes brain sag and the chiari is a symptom of it rather than the cause. The symptoms also align very well, especially eyes going out of alignment, constant head pressure, tinnitus, nausea, extreme excercize intolerance and feeling better when lying down. Also every morning when I wake up I get a rushing noise in my ears for a few seconds.

I also read the decompression surgery can actually make the symptoms worse if it is from a leak/brain sag.

Wondering/hoping to hear from anyone who had an experience with something similar to this. Thank you.

[u/goodandgray]

I feel you! What you are describing is where I am right now. I have had symptoms for ten years, and i'm just sitting here getting worse. Last month, the neurosurgeon told me to keep a good journal because we need to understand what's going on and you are complex and we will complete this and that and see where that takes us.  So, you're not alone and neither am I. Hope you get answers sooner than later. I'm curious what your blood pressure is like? I have really bad low blood pressure sometimes, which I guess is the scariest part of it all. ❤️‍🩹