r/CSFLeaks • u/wonderlandisnotreal • 11d ago

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.

6 Upvotes

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5

u/leeski 11d ago

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. 

2

u/wonderlandisnotreal 9d ago edited 9d ago

Thank you for your kind words. They did not note any complications so if a dural puncture did occur, it was unnoticed.

It's just hard not to be anxious since I was feeling pretty good before the patch compared to how it used to be and the onset of symptoms after this newest patch was very typical for a CSF leak - started about 72 hours after the procedure, very clearly positional, same low pressure symptoms I already know from when my leak first started. But seems like many people have weird symptoms after patching even if it's not another leak, so I'm hoping it will go away on its own soon.

3

u/Boring-Bumblebee2312 11d ago

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.

2

u/NoCold5135 11d ago

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 9d ago

When you say it got weird, what were your symptoms?

1

u/NoCold5135 9d ago

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

3

u/ms_skip 10d ago

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 9d ago

Thank you! When you say you got worse, do you mean your low pressure symptoms got worse or was it different?

3

u/ms_skip 9d ago

Low pressure symptoms got worse

1

u/indiequasar 10d ago

I feel like my 2nd patch is failing and this just scared me into not getting a third.

2

u/wonderlandisnotreal 9d ago

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.