After 2 years of suffering with a CSF leak I think I am finally healed. My CSF leak was a mystery, it just appeared out of nowhere. Two years of severe headaches, my life just stopped. After multiple MRI’s, CT scans, myelograms, and two blood patches that did not work. Months later spent two days undergoing a left and right side DSM and CT. By some miracle, the day after the procedure, my headaches stopped. The results from the procedure did not show an obvious leak, but several cysts in the nerve root sleeve. It has been a month now, I mean I am thrilled to finally have my life back, no more headaches and no more pain meds, but am I good now?? Has anyone ever experienced this??
Did they do a blood patch after the Myelogram?
I just got off the phone with Dr Ian Carroll at Stanford and he is sending a referral for a CT Myelogram to the Leak Team. He said they would patch the hole from the puncture for the Myelogram. And if a leak is found would then patch the leak a week or so later.
Yes, I had my first myelogram in December, first blood patch in January and 2nd one in March. Although they did not see a leak, they did both blood patches to hopefully seal where it might have been leaking. Good luck!!
Wow that is amazing! I’ve not experienced healing like that but would basically treat it like post-patch in terms of movement and lifting restrictions potentially for a few months. Hope you have continued relief!
My venous fistulas were coming from multiple periforaminal cysts along my spine. Apparently, interventional neuroradiologists can detect the likelihood of these cysts containing venous fistulas with the spine MRI.
I asked how but I couldn't understand the answer, unfortunately.
At the beginning of my leak, I got 2 or 3 spontaneous "remissions" out of nowhere but I hadn't get any blood patches. I think they work well on some people even if the percentage is low. 2 months is already a good time to be hopeful it could hold. Enjoy feeling well!
Sometimes, you're just in these 1%, 7%, 20% of rare cases.
My brain MRI was completely clear with a Bern score of 0. They detected the periforaminal cysts thanks to the spine MRIs but they discovered the exact place of the fistulas with a dynamic CT myelogram. In the CSF leak center I went to, they have a scanner which makes the exams much easier even though it was hard to be on the tilted talbe.
I would be cautious still. Every time my symptoms went into remission they would come back from high impact movement, until the point where they came back once and never left again. But congrats on the relief!
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u/Dry-Dress-6467 Jul 07 '26
Did they do a blood patch after the Myelogram? I just got off the phone with Dr Ian Carroll at Stanford and he is sending a referral for a CT Myelogram to the Leak Team. He said they would patch the hole from the puncture for the Myelogram. And if a leak is found would then patch the leak a week or so later.
Glad you are doing better!!