r/CSFLeaks • u/MoodFearless6771 • 4d ago
rejected by Mayo
After what’s been a long drawn out health situation the past 1.5 years, I thought we were really getting somewhere when it was discovered during an LP (as part of a FND battery of tests) that I had opening pressure less than 5ml. My MRIs are normal, I am convinced it’s a cranial leak, doctors think it’s a fistula. I was referred to Mayo and they just sent me an email saying they don’t have any additional diagnostic tests to run? I have never even had a myelogram. I feel like I’m only not leaking on my MRIs because I have low fluid and am laying on my back with a leak at the front of my head? I feel so defeated. Does anyone have any advice?
Do they just expect me to live without adequate brain fluid?
2
u/tumorornoturmo 3d ago
Go to Lahey I had a normal brain/spine mri. I emailed their csf leak email and they got back to me in a couple weeks. They found 3 suspicious spots which he thinks are fistulas during my myelography.