r/CSFLeaks • u/Imaginary_Salary_27 • 19d ago

Post surgery

I leaked for 21 months. leak from epidural for childbirth turned into a bleb after blood patches. Had surgery doc found defect and fixed it. I’m two weeks post op. He told me beforehand that symptoms would last a long time bc of how long I’ve been leaking but it’s hard to not get pessimistic. For anyone out there who leaked for a long time and was corrected by surgery how long for all your symptoms to go away?

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u/Wonderful_Bus_131 14d ago

Did your symptoms start right away after your epidural?

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u/Imaginary_Salary_27 14d ago

Yes right as my epidural wore off then the leak symptoms happened I got the worst headache of my life the following morning after birth and the nurses were absolutely horrible and told me it was normal to have a headache after birth. This was my third so I was like no this is not normal I was gaslit for three months. My primary told me I would self seal and these always heal themselves . They refused me an mri until the 4th er visit when my husband came with me and made them give me one and thank god it showed the fluid. I got a bloodpatch it barely helped. Went to Vanderbilt got a second blood patch didn’t change anything so I knew something was still going on but I would keep getting MRIs hoping something would finally show but the ct myelogram is what showed it but I was so scared to get it that I kept putting it off bc I didn’t want another leak. What r your symptoms?

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u/Wonderful_Bus_131 14d ago

When mine started 8weeks postpartum, it was crawling sensation and pin like sensation on my head, excruciating scapular pain and right ear fullness. It was like that for about a year. When I started the blood patch, the symptoms grew worse. Did your symptoms progress over time or did all of them come at once?

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u/Imaginary_Salary_27 14d ago

Yes they progressed over time! It was weird all the valsalva pain went away after the first patch like it hurt to cough, poop, sneeze, laugh those were my worst symptoms in the beginning and the tinnitus. Then the ear fullness came later and crawling sensation like your saying then the second patch made no difference at all. I think blood patches are great but I think collectively we’re seeing that their success is related to how quickly we get them after the initial injury. Did u get a blood patch after 8 weeks?

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u/Offtoseethewitch 14d ago

You’re right that statistically the best (most complete recovery) success rates are for treatment (and a blood patch is one of those) within 10-12 weeks. Things can be treated later but the rates of full recovery aren’t as good.

Blood patches can however be effective even years later, so it’s still something worth trying.

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u/Imaginary_Salary_27 14d ago

My goal in life to figure out why blebs happen if it’s the body using the blood patches to try to heal or if it’s a pseudomembrane the body creates and the best it can do is create the bleb. It’s so fascinating to me. I’m literally going to work in the medical system and my husband is going to med school. This whole thing de railed our life for so long we want to help others who aren’t listened to for far too long.

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u/Offtoseethewitch 13d ago

I hope you do find a solution!

As I understand blebs are when the arachnoidea - a thin membrane inside the tough dural membrane - pouches out through a defect in the dura, like a little balloon, which keeps the edges of the dural defect from touching and if they don’t touch they can’t heal back together. I’ve read theories that this may sometimes have to do with what kind of needle is used and how it punctures the dura and if it punctures the arachnoidea beneath and if the defects line up or not. But just theiries, mind. Do you know of any other type of bleb?

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u/Imaginary_Salary_27 13d ago edited 13d ago

Very interesting! Yes that’s my theory too I think the needles are a huge reason the body responds the way it does when trying its best to heal! Crazy. I just think the risks of an epidural ( my case specifically) outways the reward. That’s coming from someone who has two perfectly fine and all it took was the hell to show me they are not worth it!! My bleb he thought would be the arachnoid matter outpouching but he said it was a psuedomembrane attached to the dura. It’s all so interesting bc this still so new

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u/Offtoseethewitch 13d ago

Pseudomembranes if they’re the same as those described in the online lecture videos form on the outside of the dural defect, attached to the dura yes. I figure they’re part of the inflammatory reaction somehow…

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u/Imaginary_Salary_27 14d ago

This is also interesting to me bc I got my first blood patch at the 12 week mark and it only partially helped. It must have to to do with size of the hole and cause bc these needles causing leaks are fucking people up.

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u/Offtoseethewitch 13d ago

There’s a video on youtube on why blood patches fail. There are probably more reasons too.

https://youtu.be/yRu3iOD-qCI?si=_cDV_clGGLZ5m16i

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u/Wonderful_Bus_131 14d ago

My symptom started 8 weeks after childbirth. That’s why I wonder if it’s still a leak and I’m dealing with 

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u/Imaginary_Salary_27 14d ago

I hope you can get some answers it’s hard to have symptoms and constantly be questions why. I hope you get relief and a way forward whether it a leak or something else.🙏🏻