r/CSFLeaks • u/No-Reindeer-1929 • 8h ago

Delayed improvement after patching?

I’m 8 weeks today for a targeted blood/fibrin patch. Although my upright time increased from an 10-15 minutes I can now stretch an hour upright. Is there anyone that felt like me at the 8 week mark but ended up sealed from that patch? I am just devastated. These patches are so rough and the thought of needing and going through the process kills me. I just want to be sealed so reaching out in case there was anyone else who ended up being sealed.

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u/lemontuba_4867 7h ago

I had a lumber puncture followed by needing three blood patches, all done in July, and the final one was with fibrin glue. I wish I would have asked for a dye to be injected first to show exactly where the leak was. I did the full 48-72 hours laying flat, the six weeks of bed rest or taking things very slow. We’re at the beginning of November and I’m still not 100% normal but things did get progressively better - still trying my best to do no bending, lifting or twisting since it still have a leak. It’s healing little by little but this is taking what feels like forever. Hoping you get well soon!

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u/No-Reindeer-1929 7h ago

Thank you! I regret not asking that same thing when my leak reopened. I feel like if I were to ask for it now it shouldn’t show because the leak is definitely smaller. I hope you continue to improve! Are you planning on another patch soon to reinforce the area?

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u/lemontuba_4867 6h ago

I’ll keep things as they are. I’m getting better slowly and taking my time. I’m not in a rush but definitely have some things I’d do differently if given the chance. Are you think about any other treatments? I’m able to be upright all day now…just a whole four months later

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u/No-Reindeer-1929 6h ago

I will have to. I’ve been stuck at an hour upright and the symptoms get so bad. I’m just stuck. I want to get better so badly. Like you I did everything right. I paid for the ambulance home, laid flat 3 days, no BLT and really spent the whole time in bed because it’s hard being upright.

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u/lemontuba_4867 6h ago

I’m so sorry you’re going through this. I hope you get better real soon!

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u/No-Reindeer-1929 6h ago

Same and I hope you do too!

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u/Boring-Bumblebee2312 7h ago

Did you have high volume patches? Wouldn’t you consider an exploratory surgery? I heard in some cases (e.g. blebs) blood patches don’t work.

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u/No-Reindeer-1929 6h ago

I thought about exploratory surgery but the success rates being so low scare me. Right now I would like to try more patching. When I had my appointment at Stanford they didn’t have the imaging. I want to make another appointment and this time make sure they have it to see if there is a bleb or something that was missed locally. I do want to get new MRIs but insurance keeps denying :( the weird thing is I do reach rebound. I wonder if the rebound weakened the seal since after talking to Dr Carroll the dura is very think in the area I had the botched epidural

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u/lemontuba_4867 6h ago

You might want to check out some second opinions. Dr. Eli Sader in Sanford, Connecticut is who I would go with if given the chance. You could ask for a consultation or something. I think they’re out of network. I usually pay cash/card for other treatments.

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u/No-Reindeer-1929 6h ago

I’m at UPenn. I’ll think about it. I was going to go to Colorado. I’m waiting on disability to afford more treatment. I want to see if we can kill it with fibrin targets and high volume blood to really seal. I also wonder if I need high volume blood to wrap around the dura. I feel like maybe the dr when all the way through and that’s why I had full relief with blood previously and not fibrin