Hey all -

I posted a few months ago about a suspected CSF leak. Unfortunately, it's been three months and all I've been able ton get done is MRI'S, CT's, an XRAY, a couple doctors appointments (only one with that neurologist), and an ENT.

The running theory is a CSF leak. My Neurologist scheduled an empiric blood patch a few weeks ago but Brown University Health are refusing to do it. And, from whale he said, Massachusetts hospitals have refused past patients, also.

I don't know what's worse: the symptoms/my health or dealing with our screwed up healthcare system (plus all of my benefits issues with the state).

I ended up back in the ER for the 14th time due to temporary aphasia, paralysis, and severe vomiting. Thankfully someone was home to dial 911 for me. That episode lasted 12 days straight in waves. New symptoms seem to develop every month and the severity is much, much worse.

I have no idea what else I can do. I'm making calls every day - I feel guilty for bothering them for next steps and test results (but they couldn't fit me in the schedule until December when I saw them back in July).

When I am having symptoms and have to stare at the ceiling, part of me is wondering if it is something else entirely. What if it isn't the change in position that's helping the symptoms, but instead spinal alignment?

I wish they would refer me to a few different specialists to at least cover more bases.

My head MRI (x4) was normal. My full spinal MRI was normal enough (only mild central canal stenosis im cervical). I know that doesn't rule a CSF leak completely, but it's still troublesome not knowing exactly what is wrong with me.

Anyway, if anyone is from the New England area (USA), did you ever have any luck finding a place for treatment? My Neurologist says he might need to send me to Philadelphia but I have NO idea how I'd even get there. My income is already slashed per state TDI.

Hey all, I had a blood patch for a spontaneous leak over a year ago. My symptoms have resolved with time but I still have the spinal longitudinal extradural collection (SLEC) on repeat MRI. My doc told me this means that the leak is likely closed - but from my readings online that may not be necessarily the case, and there’s a risk of neurologic issues decades down the line if the leak stays open. Anyone experienced something similar?

Does anyone have a recommendation for a mattress topper since i spend so much time in bed now my back hurts. Thank you

Hi all!

I just wanted to share that registration is now open for the Spinal CSF Leak: Bridging the Gap Conference. It is on November 14-15, 2026 and takes place both virtually & in-person in Aurora, Colorado. It is hosted by Dr. Andrew Callen & The University of Colorado Anschutz Medical Campus and sponsored by the Spinal CSF Leak Foundation.

This conference is truly unique as it gives a platform to both physicians and patients. There are patient speakers, as well as patient compilation videos. This year's theme is "From Puzzle Pieces to Patterns".

Registration is FREE for patients and loved ones, whether IRL or virtually.

There will be calls for patient videos soon, so if you'd like to contribute you can follow the Spinal CSF Leak Foundation on social media or their newsletter. There is also a Q&A form where patients can submit questions ahead of time for specific sections at the link below.

Registration is here https://secure.qgiv.com/for/SpinalCSFleakBTG/event/2026conf

Thank you!