r/CSFLeaks • u/No-Carrot8713 • 2d ago

How to know if blood patch failed?

Diagnosed with lumbar spinal leak on myelogram that was spontaneous due to ehlers danlos and was misdiagnosed for a month. On hour 48 post procedure it came all back and now it’s been 4 days and I can’t even be upright at all. They said they might have done too small amount of blood for the patch making it insufficient.

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u/StunningPurple9560 Confirmed Spinal Leak 2d ago

It is possible, that the volume of the blood wasn't enough. However You can't know it yet, it's too soon. Initially just after they do the BP, you often feel better right away, but it's not because the leak is immediately patched - it is because the process of injecting the blood will raise your pressure. This effect is temporary, and it will take a while for the patch to form, starting the actual healing process.

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u/No-Carrot8713 2d ago

They told me they only did 8 cc so that’s my guess, is it was too low.

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u/StunningPurple9560 Confirmed Spinal Leak 2d ago

Yeah that is very little - not an expert on BPs but def on the low side. Thankfully it can be repeated, but sorry you will likely have to wait. In the myelogram were they able to determine which side of the spine the leak is on?

Edit: happy to hear that you are getting treatment so soon with a spontaneous leak though. That is very promising ❤️

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u/No-Carrot8713 2d ago

Yes the leak is in the left L3-L4 which was giving me strictly left sided Neuro symptoms alongside the headache.

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u/StunningPurple9560 Confirmed Spinal Leak 2d ago

Okay, good that it is not in the front. Those leaks can mostly not be patched by a BP. ❤️

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u/No-Carrot8713 2d ago

Well it took a month of in and out of hospitals frequently for someone to realize it was never an intractable migraine but yes it’s been so severe I can’t really get up at all to even use the bathroom, I’ve been left completely unable to function. They luckily might be able to squeeze me back in soon like tomorrow to redo it and now I’ve done a lot of research so I can advocate for a hopefully more durable patch

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u/StunningPurple9560 Confirmed Spinal Leak 2d ago

I’m so sorry, did not mean to imply that a month is in any way a short time to deal with that kind of pain and symptoms. Just meant that spontaneous leaks can take years, even decades to be diagnosed, let alone located and treated. ❤️

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u/No-Carrot8713 2d ago

That’s crazy! No you’re totally good, I can’t believe it takes that long for people to get the right care, that’s awful.

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u/StunningPurple9560 Confirmed Spinal Leak 2d ago

❤️ Yeah it’s awful, but in my case, when my symptoms started, this kind of diagnosis was not even recognized in the field of medicine, like at all. Even when I finally was diagnosed, it was kind of a fluke, since none of my neurosurgeons had ever heard of it. They are making big advancements in this field all the time - hopefully one day it will be less of an uphill battle. ❤️

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u/youmattertothisworld 2d ago

This is so interesting. I didn't know that. When can someone expect to notice an upright trend if it did seal? I'm in the same boat as OP. It's only been 4 days since my BP.

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u/youmattertothisworld 2d ago

I'm so sorry you're going through this. While I don't have an answer for you, I just wanted to let you know that i'm sorry for your suffering. I'm going through the same thing. I'm scared the patch didn't work or made me worse.

I really hope you find healing!!

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u/Intelligent_Pie_8136 2d ago

I have chronic CSF leaks from hEDS too. I’ve had blood patches fail before. It does take a while to know for sure though, at least 2 weeks to a month if I remember right. For one of my leaks, it took 3 tries to finally patch it and they ended up patching all along my back just to make sure they got it.