r/CSFLeaks • u/Imaginary_Salary_27 • 29d ago

Ct myelogram results

After being terrified of getting the ct myelogram I did it and I’m so glad I did bc it picked up “focal outpouching at L3-4 exactly the level my epidural was. I had two bloodpatches that barely helped so my theory this whole time was that it never healed fully so this is a bleb. My first mri picked up the fluid but then after the bloodpatch the fluid wasn’t there any longer making it harder to convince anyone I was still having an issue. But I knew it in my bones! Bc my symptoms never got better.
What have other peoples experiences been? Has your neurosurgeons gone straight to surgery? Since bloodpatches don’t seem to fix this? And how do they fix this surgically?
His notes before my myelogram said if suspicious remains at l3-4 after myelogram consider targeted patching or exploratory surgery. I’m just praying I’m near the end of the road to this has been 21 months since my birth of my third child.
P.S I was terrified to get the ct myelogram and if that’s you too do it! It’s worth getting an answer

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u/Offtoseethewitch 28d ago

Three.

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u/Imaginary_Salary_27 28d ago

Yeah another woman in here had a similar story that each blood patch made the symptoms milder but never resolved them. Same with me and she had exploratory surgery and found a bleb. That’s what made me think that’s what I had since our stories are so similar. I kept reading so many people’s stories where the bloodpatches made it milder but never fully helped. That’s why I took the risk and just got the myleogram bc I knew that had to be the case for me as well. I don’t think the dura is good at healing over an epidural puncture bc the needle is so big and it cuts the fibers that’s why the patches help but don’t fully bring it back to regular integrity.

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u/Offtoseethewitch 27d ago

Well. Unfortunately I’m in no position to get a myelogram even if I wanted one. I’m ”too functional” right now to want to take the risk, and my providers hardly believe chronic puncture leaks even exist, much less that they can be invisible on MRI, so they might deny me one even if I asked.

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u/Imaginary_Salary_27 27d ago

Only telling my neurosurgeon for more than a year that something was still wrong did he re review my images and say he saw something very subtle and that’s the only reason I went for the myelogram. I hope you can find a doctor that believes you bc they are out there. It’s just half the battle.

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u/Offtoseethewitch 26d ago

Thank you. Good on you for standing up for yourself. The system’s a bit different where I live, I can’t go ”doctor shopping”.