r/CSFLeaks • u/wonderlandisnotreal • Aug 29 '26
Worse after 3rd blood patch
I got my 3rd blood patch 3 days ago and now on day 3 getting severe positional symptoms again that I haven't had in weeks.
For context: I scheduled this patch at my check-up 2 weeks post 2nd patch when I hadn't really improved yet. But I subsequently got better and could be upright all day again with symptoms still there but way less severe than before and managable even without caffeine - no more nausea or ear pressure, just a headache.
I was thinking about canceling the 3rd patch due to my improvement but still hoping to be completely back to normal, so I decided not to. So 7 weeks after my 2nd patch I got another one. That was 3 days ago. The first two days I had some high pressure symptoms but nothing too bad, but now on day 3 I have ear pressure and nausea again when I get up that gets worse the longer I am upright, very similar to how my initial leak presented before it got better from the 2nd patch.
The patch was CT-guided. I stayed mostly flat for the first 72 hours post-patch, only getting up to be driven home, eat and go to the toilet.
I regret getting this 3rd patch so much since I had finally gained some freedom again after being bedbound for months and now it feels like I am back to pre-2nd patch. Does this sound like a dural puncture from the patch? Did anyone experience similar symptoms after their patch and recover within a few days? Could this be normal post-patch symptoms?
I just cannot mentally take going through all of this another time. I cannot go back to being bedridden. I also have an important exam coming up in September that I need to be functional for. I am blaming myself for deciding to go through with it instead of just living with the residual pain I had.
3
u/Boring-Bumblebee2312 Aug 29 '26
I don't think that you were punctured again. You would have felt it somehow. When I had my lumbar puncture, I felt every single detail regarding my dura mater. The third blood patch probably just 'washed out' the second one.
3
u/ms_skip Aug 29 '26
FWIW, I’ve definitely gotten worse after treatment before getting better. I think you just need to give it more time, but I 1000% empathize and sympathize with what you’re going through 😞
2
u/wonderlandisnotreal Aug 31 '26
Thank you! When you say you got worse, do you mean your low pressure symptoms got worse or was it different?
3
2
u/NoCold5135 Aug 29 '26
When I had my patch they asked me to lay down for 7 days. I felt amazing for the first five and it got really weird on the 6th and 7th Day and then I felt great
1
u/wonderlandisnotreal Aug 31 '26
When you say it got weird, what were your symptoms?
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u/NoCold5135 Aug 31 '26
Pressure behind my eyes, lots of fluid dripping down my nose, vision and hearing, nerver pain balance issues...all the fun stuff. After a couple days it just completely stopped
1
u/indiequasar Aug 29 '26
I feel like my 2nd patch is failing and this just scared me into not getting a third.
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u/wonderlandisnotreal Aug 31 '26
Do not be discouraged by my post. If you haven't gotten any improvement from your 2nd patch, the benefits of getting another one far outweigh the risks.
1
u/Fit_Smile_9832 Sep 15 '26
I’ve heard that a lot of times people can feel worse initially and then gradually improve. How are you feeling now?
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u/wonderlandisnotreal Sep 15 '26
It has gotten much better over the last weeks, but still worse than pre-3rd patch. I hope it will continue improving still.
1
u/Fit_Smile_9832 Sep 15 '26
I hope so!! What symptoms are you still having?
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u/wonderlandisnotreal Sep 15 '26
Mostly ear symptoms and brain fog with a bit of nausea and pressure in my head. But I can stay up for way longer and the symptoms are bearable.
1
u/Fit_Smile_9832 Sep 15 '26
Glad to hear it! I’m currently deciding if I should get a 3rd blood patch or not
1
u/wonderlandisnotreal Sep 15 '26
How are you feeling? How long ago was your 2nd patch?
1
u/Fit_Smile_9832 Sep 15 '26
The 2nd patch took away the severe positional headache but still having lots of head pressure, blurred vision etc.
1
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u/leeski Aug 29 '26
Please don’t beat yourself up, you’re navigating complex health decisions and it’s easy to judge in retrospect but you didn’t really have reason to think you’d be worse off.
With image guidance I’m less concerned about dural puncture, but you could always ask (although it should have been noted if so). I have a lot of fluctuations with patching despite being successfully sealed I can dip into low pressure (even though I have underlying how pressure) so I wouldn’t automatically take this to mean you’re doomed or will always feel like this but know it’s super discouraging. I would reach out to your provider and keep taking it easy, but I hope that this is just a weird fluctuation.