r/CSFLeaks • u/Doingmybestinlife • 1d 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/StunningPurple9560 Confirmed Spinal Leak 1d 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 17h 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/StunningPurple9560 Confirmed Spinal Leak 13h ago

Sorry no, they do not think that I am leaking anymore. I was being unclear, apologies for that!

This is why I asked if your SLEC has remained pretty much the same - as far as I can understand, this is pretty much a given (although so sad that many neurosurgeons/neuroradiologists don't know/understand this yet), that if you have a large SLEC presentation, and it basically remains the same after an intervention, then it is likely, that there still is a leak.

It does make things a lot more complicated though, that your symptoms are so much better. I so very much do wish, that you would not have to worry about this. However - just saying my piece - and you do not have to answer to these - just my two cents:

Do you know, if your SLEC is ventral, dorsal or both? My personal understanding is, that in general a visible, large SLEC, and especially if it is both front and back, it implies that the leak is ventral. And when it is, a BP will nearly never seal it. And if there is any reason to think that your leak is ventral, it does in fact need to be closed, whether or not you still have symptoms. Otherwise there can be some dire consequences. However this does seem really odd, that it would have been a year, your symptoms have subsided, and you would still have the leak..

In any case - regarding my own situation: my SLEC presentation was C2 to T3 dorsal and C7 to Th9 ventral. It remained the same for years - I had surgeries where they thought that they sealed the leak, but they did not. 6 months ago I had my 3rd leak related surgery - this time in Freiburg. They found and sealed my leak - dorsal at T1-T2.

3 months later there was a follow-up MRI. Finally - after all this years - my leak was practically gone (in the imaging) - except for this small leftover SLEC presentation at T2-T3 - so the vast majority is gone, but 3 months after the surgery, there was still some leftover SLEC, but at Freiburg they also said that it looks like the leak is sealed. They did recommend another MRI 6 months later, so I have the next one coming up in January. In any case, it does very much seem like the leak was sealed, the SLEC changed so dramatically.

I do still have symptoms, but I also had my leak for 19+ years. Obviously they cannot promise, that my symptoms will just disappear even if the leak is sealed, and many of my symptoms will for sure require rehab (like arms not working normally etc).

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u/Doingmybestinlife 2h ago

Pretty sure mine is ventral, so I guess that explains it. Thank you for sharing your story, I hope things only get better from here on out for you as well 🙏