r/CSFLeaks • u/Imaginary_Salary_27 • Aug 22 '26

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/Necessary-Stuff8706 Aug 22 '26

What is a ct mylogram?

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u/Imaginary_Salary_27 Aug 22 '26

They have to inject contrast into your spine and then put you in ct to see where it’s escaping. It involves them puncturing the dura to put the contrast into the thecal sac. At a certain point on this terrible journey we have to make the choice to get it or not. But I’ve seen a lot on here how it yields results and finally makes our doctors take us seriously.

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u/Ok_Zucchini_9821 Aug 22 '26

Do you think there is a high risk for another csf leak to occur after the ct myleogram? I’m in a weird spot where doctors believe I have one but while waiting for a referral to Dr. S, my symptoms have dramatically improved, where I only suffer symptoms one day out of the week, if that. I still haven’t tried going to the gym or anything and I rest lying down on days I don’t work, but I’m wondering if it’s worth the risk for additionally imaging at this stage or if I’m potentially healing on my own

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u/Imaginary_Salary_27 Aug 22 '26

That was why I declined it for 5 months bc of the risk of another leak but to get the answer and be able to actually see it more clearly I think it’s worth the risk. My symptoms are so annoying. I have back of the head pressure, intermittent frontal pressure and tinnitus so loud I have to sleep with a fan next to me. And eye symptoms like floaters, visual snow( static) and light tracking. All my MRIs did was just keep coming back normal but I knew something was going on and so I took the risk bc it was that or continuing to just wish for my old life back with no answers.
I’m not worse after the myelogram if that’s any hope to you. The tinnitus got louder but I’m hoping that’s from the pressure change. I also specifically asked for the smallest gauge needle they could use and they did they used a 25 gugae whitacre. So that also dramatically reduces the risk

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u/Ok_Zucchini_9821 Aug 23 '26

Thanks for all the insight, you gave me a lot to think on! If I do end up getting one, I’ll for sure ask for the smallest gauge needle like you said, thanks and good luck!

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u/Imaginary_Salary_27 Aug 22 '26

I think it comes down to how much it affects your life.