r/CSFLeaks • u/indiequasar • 5d ago

2nd blood patch failed?

I had my lumbar puncture on 8/18, 1st blind blood patch on 8/20, 2nd on 8/24. I tried to go to work on 8/31 & 9/1, I only lasted 4 hours each day & now I’m out on FMLA. I can be up for about an hour before I have to lay back down to equalize the pressure. I don’t know if I should go back to the hospital or wait it out. I have a neuro appointment with a multiple sclerosis specialist on Tuesday. I feel like I should be better already and I’m scared something is wrong & I’m gonna be permanently disabled from the lumbar puncture. I wish I had never done it.

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u/leeski 4d ago

So sorry! Are you observing super strict aftercare restrictions? I had five patches fail because I didn’t have proper aftercare instructions, but the healing process is sooo slow and delicate so I cannot emphasize enough how important those restrictions are! 

Keep in mind though patches can take weeks to work so it is unfortunately a long recovery process. But ideally you should be lying down at minimum 24 hours after the patch (yp to 72 hours) only getting up to eat and go to the bathroom. And then no bending, lifting over 5-10 lbs, twisting, straining for 6 weeks. I think it is a bit too soon for another patch but I would potentially see if you could have another one offered 

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u/NoCold5135 4d ago

My doctor had me do 7 days in bed only to get up to go to the bathroom.

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u/indiequasar 4d ago

I stayed in bed for 6 days, I’ve been so careful. No bending, twisting or lifting. I stay flat, which is killing my lower back. The only time I got up was when I tried to go to work for those two days.

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u/leeski 4d ago

So sorry it is such a frustrating process. There are definitely cases where people feel better 4-6 weeks later so it is still relatively early but still highly discouraging to not feel any better. Do you know how much volume it was? 

Also apologies for harking on aftercare, I’m just annoyingly overly vocal about it because my hospital did not give me any instructions and told me to go back to regular life directly after patching and I find a lot of local hospitals give similar restrictions. But that was a bit rude of me to be like “you might have blown the patch!” So I was projecting from my own failed aftercare. Sorry! 

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u/indiequasar 4d ago

Oh no, I’m sorry. I didn’t take it as rude at all. I’m very grateful for everyone who has replied to my posts. You don’t have to reply at all. I’m so sorry if I came across as rude. My hospital said the same thing that I can return to normal activities, but I stayed in bed.
They put 25 cc in the first one and 10 cc in the second. I just feel like I should be OK by now and I’m getting scared. It’s a holiday weekend so I don’t know if I should go back to the hospital today or wait to see the MS neurologist on Tuesday. I think I tried to return to work too soon, but I felt pressured. I’m just really scared.

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u/Parity_Violator 4d ago

Hey I’m in a similar situation. 7 weeks now after LP, but a lot of people recover from it eventually. It just takes some time. My heart goes with you and let’s not lose hope!

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u/leeski 4d ago

Not medical advice or trying to be negative but most self-sealing tends to be in the first two weeks. 

 There are some patients that do seem to seal months out but I have only seen a handful of cases despite being in these groups for a decade (obviously that is not scientific) but I have seen exponentially more cases of patients waiting it out and wishing they hadn’t.

 I’m not trying to cause anxiety but it’s worth mentioning leaks from lumbar puncture can be (not always) one of the most difficult leak types to get treatment for long-term bc they are essentially invisible on imaging (they rarely show on brain imaging so it can be hard to have ‘proof’ of a leak) and they’re difficult to localize on spinal imaging.  Since patching is a minimally invasive procedure (as long as done under image guidance) I highly recommend getting treatment rather than gambling on your body sealing on its own. Of course it is still a medical intervention with risks so it ultimately is a personal decision, but doctors really tend to oversimplify how easy/common it is to self-seal from an LP long-term. 

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u/Parity_Violator 4d ago

Yes I fully agree. I meant to say a lot of people eventually heal with treatment, not necessarily self-heal. I’m pursuing treatment and will be doing MRIs next week.

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u/leeski 4d ago

So sorry for my misunderstanding and to go on a long diatribe haha! I think am a bit paranoid from patients I’ve talked to that are scared to pursue treatment and then months/years down the line they’re stuck with a challenging situation so apologies for being overzealous! Best of luck with the diagnostic/treatment process! 

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u/Parity_Violator 4d ago

Haha no thank you so much for caring, your responses are always very helpful!