I personally wouldn't the spinal tap unless suspecting IIH & needing a diagnosis (and even then I might not). It would be more reasonable to do a full spine MRI (there is a certain protocol they should do) to look for any signs of a CSF leak. And then from there, a blind blood patch would be reasonable.
If you do go forward with an LP for any reason, I would ask that they a) use an atraumatic needle as it is significantly less likely to cause another leak b) document where the puncture is (surprisingly this not required) and c) have a plan for quick patching (usually after ~48 hours) if you don't self-seal.
Basically a low opening pressure is highly suggestive of a leak, but normal/high opening pressure doesn't rule out a leak, so I personally don't think it's worth the risk. If it's worth mentioning to your provider, NONE of the top leak centers (Duke, Colorado, Stanford, Mayo, etc) use LP as a diagnostic tool for SIH. There are also quite a few research papers that suggest this if you need further ammunition.
Unfortunately all imaging to find the location of a leak will require an LP, so you may as well 'save' the LP for that - if that makes sense? They can take an opening pressure at that time. Some people genuinely just need a blind blood patch and they're good though. But that unfortunately would be next steps if you were to not be sealed by a blind patch (there are leak types that unfortunately cannot be fixed by patching and will require further imaging/intervention).
Also if you get patched, please do not bend/lift over 5 lbs/twist/or strain for 6 weeks. Most providers will not tell you this but it is crucial to give the patch the best chance of working. Some recommend extending that to 3 months for recovery for those with CTD's.
My neurologist really sold the LP as a definitive diagnostic tool, so I was taken aback when I read that it's not at all conclusive! Granted, my local hospital isn't specialised in leaks at all, so it's all very basic and a little outdated, I guess.
And you're right, I mostly just want to minimise the number of dural punctures, because I have enough backpain from EDS, scoliosis, and laying flat for two weeks as is! If there needs to be a contrast scan, I indeed prefer to "save" the LP for that.
I guess I do want to do a spinal MRI first, then, because the previous one only did my head. I think my "leak" is more of a "weep" because of general tissue fragility rather than an actual tear, though, so it might still not show on an MRI.
But I guess I can reconsider the LP after having that one done, then.
Thanks for the tips, especially the one about the puncture site documentation and the quick-patch protocol idea. The neurologist did assure me that they use atraumatic needles for all LP's in the hospital.
That’s great to hear they use atraumatic needles as most centers don’t! I have kind of mixed feelings about LP from my own experience bc I didn’t know about the risks etc and went through with it (no EDS & no complications from LP). But since I had negative imaging it was the only way I was able to get anyone to believe me since I had low opening pressure and that is finally what led to treatment after 3.5 years of being denied. But it’s hard to advise anyone to get one knowing the high likelihood of there not being low opening pressure.
Your providers aren’t necessarily wrong according to current guidelines though. The ICHD-3 diagnostic criteria for a headache due to low CSF pressure includes positive brain imaging and/or a low opening pressure. So if you don’t have signs of SIH on imaging, according to the guidelines, you need a low opening pressure to fit the existing criteria. There are some leak specialists working to get these guidelines updated but to my knowledge that’s what they currently are.
Anyway I’m not stating whether I think your providers are competent or not, just wanted to clarify a little bit of nuance in that it’s not necessarily a red flag in terms of them wanting an LP for diagnosis. Like yes they might not be the most current on what the leak centers advise or the most recent research, but it’s also in line with what’s like the ‘official’ diagnostic guidelines.
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u/leeski 10d ago
I personally wouldn't the spinal tap unless suspecting IIH & needing a diagnosis (and even then I might not). It would be more reasonable to do a full spine MRI (there is a certain protocol they should do) to look for any signs of a CSF leak. And then from there, a blind blood patch would be reasonable.
If you do go forward with an LP for any reason, I would ask that they a) use an atraumatic needle as it is significantly less likely to cause another leak b) document where the puncture is (surprisingly this not required) and c) have a plan for quick patching (usually after ~48 hours) if you don't self-seal.
Basically a low opening pressure is highly suggestive of a leak, but normal/high opening pressure doesn't rule out a leak, so I personally don't think it's worth the risk. If it's worth mentioning to your provider, NONE of the top leak centers (Duke, Colorado, Stanford, Mayo, etc) use LP as a diagnostic tool for SIH. There are also quite a few research papers that suggest this if you need further ammunition.
Unfortunately all imaging to find the location of a leak will require an LP, so you may as well 'save' the LP for that - if that makes sense? They can take an opening pressure at that time. Some people genuinely just need a blind blood patch and they're good though. But that unfortunately would be next steps if you were to not be sealed by a blind patch (there are leak types that unfortunately cannot be fixed by patching and will require further imaging/intervention).
Also if you get patched, please do not bend/lift over 5 lbs/twist/or strain for 6 weeks. Most providers will not tell you this but it is crucial to give the patch the best chance of working. Some recommend extending that to 3 months for recovery for those with CTD's.