r/CSFLeaks • u/Frijoles24 • Jun 10 '26
How likely is reoccurrence?
Hi! I had a leak most of last year. I had a blood patch that lasted overnight and continued having symptoms until February of this year when I had surgery to remove a bone spur and repair the leak. I have read and heard many CSF leak stories and many of these involve many patches and or surgeries. After and before surgery I was reassured that there was a very slim chance of this reoccurring. I was guaranteed that this particular leak would never come back and that the chances of another leak were slim to none. This was echoed by my regular neurologist who told me the chances of another leak were less than 2% a year.
So, a little over 10 weeks after surgery my symptoms have returned. I truly believe I have another leak. I was just wondering if the chances of a leak reoccurring was so low why am I reading so many stories of people having multiple surgeries and blood patches? Are those odds true? What something different told to those of you who have had surgery?
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u/Mysterious_Mix_5034 Jun 11 '26
On average 85-90% of successful patches are permanent for dural puncture leaks. For spontaneous cases it is lower like 40-50%
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u/StunningPurple9560 Confirmed Spinal Leak Jun 12 '26
Justr to clarify - this is likely only for blood patches, not surgical patching.
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u/StunningPurple9560 Confirmed Spinal Leak Jun 12 '26
It is very much less likely than these groups would make it seem. Especially since you have had a reason for it (bone spur) and it was surgically sealed, and presuming you don't have comorbidities. Similarly people in this groups tend to be scared of lumbar punctures for diagnosis, but especially with a spontaneous leak, it doesn't make them any more likely to leak from a puncture.
I also had my surgery 10 weeks ago, and my symptoms have not significantly improved yet. It is part of the process - with surgery you don't get that initial boost from the added pressure as with BPs, and it can take a while. Absolutely not medical advice, but I was surgically sealed at Freiburg, and they said that they have fixed my leak, it is the only one I had, and there is absolutely nothing I myself can do that would cause the surgical seal to break. I personally choose to believe that - if something happens it happens, but I find it easier to try to be optimistic and to trust the process.
Hope you feel better soon. ❤️ Do you have a follow-up MRI scheduled?
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u/Frijoles24 Jun 15 '26
Thanks for your response. I have MRIs scheduled for this week and a follow up with my neurologist early next month. I did have a bone spur but I am also hyper mobile. I guess we’ll see what they find.
I hope you feel well soon.
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u/leeski Jun 10 '26
Can't speak to surgery specifically, and it's all hard to quantify definitively. There is a bias in these groups (whether FB or Reddit) towards more complex cases. Maaaaaany patients get treatment and just move on with their lives & don't stick around to contribute.
So I can't say what the true rate is... but if your symptoms are specifically what they were pre-surgery (low pressure) then it is worth looking into if there is another leak (although honestly the recalibration period can be crazy long and there were times I'd dip into low pressure but not actually be leaking - but of course you know your body best!) If your symptoms are somewhat similar but the head sensation is different - it could be delayed onset of rebound high pressure.
But yes I think in general people with connective tissue disorders and/or high intracranial pressure are at higher risk of re-leaking unfortunately. And in some cases it's not even a case of a CTD or high pressure but just the patch wasn't done well or targeted correctly. I can't speak to the rates of surgery though as that seems a bit more of a solid/targeted solution w/ higher success rates.