NDPH: CSF Venous Fistula as Cause?

Hello All - I've posted here before about CSF leaks as a possible cause of my NDPH (New Daily Persistent Headache). A few years after the horrible CT Myelogram that gave me PTSD, I was able to try a blood patch. It did not make any difference in my pain. Since then, I've continued to try new things and wanted to share in case there's a treatment option you might not have heard about.

I recently moved to a new state. Prior to my move, my interventional anesthesiologist had suggested: an ultrasound-guided occipital nerve block, and Lidocaine and Ketamine infusions. We were not able to schedule those before the move, so they are still on the table.

My new neurologist said he had some success with the following combo: Memantine + Ubrelvy + Tizanidine + a boatload of supplements (ginger, B2, B12, Magnesium, and Boswellia). None of this had any impact on my pain, and at the highest dose (10mg/ twice daily), the Memantine made me dizzy.

Up next for me though is a Digital Subtraction Myelogram (DSM for short) to look for an atypical csf leak - one caused by a venous fistula. This is apparently a recent (2014) advancement in technology, and as is common in medicine, all new discoveries take time to be tested and communicated across the country and/or globe.

So first, I get to do yet another MRI so that the neurosurgeon performing the DSM will have an idea where to look. Then a week later, the 2-day outpatient DSM happens under general anesthesia. If they find a venous fistula csf leak, then the fix can be done without surgery. My doctor used words like catheter , femoral vein, Onyx cohesive, and embolization to describe the fix, but I couldn't tell what it all means. I just know that it's not surgery where they cut me open and maybe have to remove bones or deaden nerves to get to the venous fistula.

I found a super technical 2022 article that discusses these treatments: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9379705/
That article says:
"Current treatments for CSF venous fistulas include an epidural blood patch, percutaneous fibrin glue injection, and surgical fistula ligation. Recent case series also reported favorable results regarding the novel use of transvenous embolization of the paraspinal vein with Onyx in 5 patients with thoracic CSF venous fistulas."

So that article quote seems to cover all the words I didn't know and will need a medical dictionary to understand better. LOL

If you've been diagnosed with a CSF venous fistula, I would love to hear about your experience!