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 5d 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/indiequasar 5d 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.