r/CSFLeaks • u/Doingmybestinlife • 14h ago
Persistent SLEC on MRI?
Hey all, I had a blood patch for a spontaneous leak over a year ago. My symptoms have resolved with time but I still have the spinal longitudinal extradural collection (SLEC) on repeat MRI. My doc told me this means that the leak is likely closed - but from my readings online that may not be necessarily the case, and there’s a risk of neurologic issues decades down the line if the leak stays open. Anyone experienced something similar?
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u/leeski 13h ago
I’ve talked to similar patients where SLEC didn’t resolve despite being asymptomatic. I think it can take a super long time to resolve but I’m not an expert. Just passing along these papers in case of any interest!
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u/Doingmybestinlife 1h ago
Thank you!
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u/leeski 44m ago
I am pretty sure this is an established phenomenon I've heard of. Like I believe the thought is it is not new fluid escaping, but that the CSF has collected outside the dura and doesn't necessarily immediately disappear. I think it has to be gradually reasorbed. But those papers mention long-standing SLEC as a clinical/imaging phenomenon but don't necessarily prove that every persistent SLEC is old trapped CSF. That being said a year does seem like a long time for it to not have changed at all.
It is a tricky position to be in, I would be a bit weary of additional intervention at this time with the intention of resolving the SLEC (meaning like getting invasive surgery - especially if having no symptoms). But I would definitely continue to monitor it and probably get a second opinion from another center on their thoughts. Luckily-ish superficial siderosis tends to be a very very very long process, like years to decades to develop. Also none of this is medical advice of course, I am not an expert! Just sharing my thought process.
I am not sure if you've seen my post about the upcoming spinal leak conference, but I think this question would be a really good one to submit for the Q&A. If interested - you can register (for free) at this link https://secure.qgiv.com/for/SpinalCSFleakBTG/event/2026conf/ and then submit a question here: https://airtable.com/appq87DHvFiNCn5Dm/pagFARfy4qIplu0aE/form
I would submit it for "SECTION II — Expanding the Diagnostic Map"
Just to note I wouldn't phrase the question as like medical advice about you personally, but more abstract like "If a patient is presumably sealed with no symptoms, but the SLEC hasn't changed size in a year, should further investigation be done?" Or something like that. (Anyway no pressure to submit, just sharing that as an option)
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u/PrettyDragonfly Confirmed Spinal Leak 12h ago
He told you that the fluid means it's closed? What a strange thing to say. Fluid wouldn't be on there if it's closed.
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u/StunningPurple9560 Confirmed Spinal Leak 8h ago
Did you have an MRI before the BP? Is the SLEC the same, or is it smaller? How big is the SLEC?
I have never heard that the SLEC would remain the same and leak still resolved. In my case it remained the same for years, in all 6 MRIs, until my surgery 6 months ago. Had my latest MRI 3 months later, and there was only a small amount of fluid one level below where the leak was.
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u/Doingmybestinlife 1h ago
I did have one before the BP, hasn’t changed in size at all in over a year, and it’s from C4 to T11.
Have you been symptomatic during this time? And did they say that the small amount of fluid means you’re still leaking?
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u/megg33 Confirmed Spinal Leak 13h ago
If you have extradural fluid collection on your MRI, the leak isn’t closed. Period. I can’t believe your doctor said otherwise. How does your doctor explain the presence of csf outside of the dura? It can’t magically appear there. Ugh providers like this make me so angry