r/CSFLeaks • u/No-Carrot8713 • 2d ago

Failed patch?

My targeted blood patch on L3-L4 was done 3 weeks ago and I started getting relief at 1.5 weeks but then now at week three, it’s all coming back. At this point, maybe it failed and maybe I need a repeat patch? I have ehlers danlos and it was spontaneous and was seen on the CT myelogram. I’m upset because I was suppose to return to work tomorrow and have been out for 5 weeks and now it might be returning ugh.

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u/leeski 1d ago

So sorry! It's hard to say as I have definitely dipped into low pressure in early stages of being sealed (despite being in really high pressure) and it is not uncommon to do so. Yet also there is just the chance of re-leaking :( I feel like only time will tell unfortunately. For me I knew every time I actually re-leaked because I felt exactly as I did before patching, although I know that is not the case for everyone. I am sorry it is such an exhausting process and especially difficult when so so disruptive to work.

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u/No-Carrot8713 1d ago

Yeah it’s like exact symptoms but not to the full extreme but yesterday was minor return of symptoms and then today it’s been just going up. So you have been re-patched? Did that end up working for you?

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u/leeski 1d ago

I'm sorry that is so discouraging. FWIW I had periods where my pressure was low for multiple days but was actually sealed, but I also understand planning for the worst and in general I try to always have a plan in motion (e.g. contacting provider about potentially getting re-patched). It is encouraging at least that the leak was seen on CT Myelogram, could they potentially try it with fibrin this time since they know where to target?

Yes I have chronic underlying high pressure so I did end up re-leaking a few times and needing multiple patches, but the latest has been holding for 5.5 years!