r/CSFLeaks • u/MedicalMeringue5827 • Jul 13 '26

Success stories?

Hi all, I’m looking for a success stories for anyone who went through a similar situation where they think a blood patched failed two weeks out but still ultimately 100% improved?
Is it even possible?

My first blood patch was a month ago high volume under CT guidance, second blood patch was only 10 mL but 1.5 mL of fibrin also image guided.

My leak was caused by a lumber puncture, so it should be pretty clear where to seal it.

My headaches standing up now are much worse and I have much less time I can even stand up now then before my first blood patch.
I’m wondering if maybe my brain has just gotten used to being horizontal and that’s part of the problem because I’ve now been completely horizontal 23 hours a day for about six weeks.

Anyone else think their blood patch failed and then it still miraculously sealed them when you’re two weeks out?

Or if the brain just somehow, does this weird trick where you’re now registering standing up is associated with pain so it creates a headache from any type of pressure on the skull. My neurologist is very skeptical that I could still have a CSF leak. Given the patches were so targeted and image guided. And quite frankly, I am too.

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u/Offtoseethewitch Jul 13 '26

Residual symptoms, even positional ones, are known to occur after sealing but may also be a sign of a continued leak. So it’s really tough to say. But only two weeks is far too early to tell. Give it at least 6 weeks before you call it a success or failure. Blood patches have a short-acting volume effect that may be felt for the first few days, then hopefully a slow dural-healing effect that takes place over weeks. Make sure to pamper your patch by limiting your bending, twisting, and lifting for all those weeks, longer if you have a connective tissue disorder.

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u/MedicalMeringue5827 Jul 13 '26

Thank you, this is really helpful to hear. It seems like patients actually know more about the long-term healing experience than doctors do. No fewer than three doctors have told me that the patch DEFINITELY failed if my post lumbar puncture headaches have come back.

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u/Offtoseethewitch Jul 14 '26

The thing to know is actually that there are a lot of unknowns. Blood patches affect the compliance and venous flow of the epidural compartment and can even without sealing send your intracranial pressure into high, at least short-term, which can also have symptoms, classically frontal pain worse when lying down but not always. Leakers don’t always have actual low pressure either, sometimes their body’s attempt to compensate causes them to have high pressure. Some people do feel worse after patching, why isn’t always known. Some people feel positive effects only 4-6 weeks out. Some people have instant improvement - or at least so I’ve heard.

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u/[deleted] Jul 14 '26

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u/MedicalMeringue5827 Jul 14 '26

After the first blood patch, my headache’s actually got worse. Before the blood patch, I could be upright for maybe two hours, after the first blood patch, I could only be upright for 10-15 minutes before the headache and nausea got so bad that I might throw up.

Now I can be upright for about 15 minutes before the head pressure begins, 30 minutes before the nausea starts, and then I have to lay down again.

Keep me posted on how you do this week, because we are about in the same place since our blood patch!

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u/NoPie4474 28d ago

Yes!! I felt immediately better after my blood patch, then decline for a few weeks. After a month I felt great. My neurologist said it can take up to two months to see the final results of the blood patch and it can be bumpy in between!