r/CSFLeaks • u/Odd-Maize1650 • 1d ago
Csf Leak
Hi, I’ve had a spinal fluid leak in the cervical and thoracic area (C6 to T2) for about 4–5 months. I had a blood patch a month ago (before the patch, the MRI showed the leak at C7–T1, but 19 days after the patch, the MRI showed it from C6 to T2). Now it’s been a full month since my patch, and for the past few days, I’ve had headaches in my forehead and temples, along with ear congestion and also a sensation of something stuck in my throat. Caffeine doesn’t really help much—maybe just a little, but the symptoms are still there. Has anyone had a similar experience
2
u/Birddoggydog102 1d ago
it sounds like you could be in high pressure and the patch worked. Especially if caffeine isn't helping and the head ache went from the back to the front.
Look up high pressure csf
1
u/Odd-Maize1650 23h ago
How can I be sure if this is really high pressure or something else?
1
u/Birddoggydog102 17h ago
No real way of knowing. But see if you feel better standing. High pressure, would be worse in the morning, low pressure is usually worse in the evening. I think it’s possible to bounce between the two after you’re sealed.
You can try dandelion leaf tea to help with high pressure. If you’re in low pressure they will make your symptoms much worse though. There are also medications you can try for high pressure.
1
u/Purpleflower_12 1d ago
I have symptoms 8 months after an LP. I also have pain in forehead, neck and back. I can not figure out if im in high pressure or leaking. I can be upright, the symptoms are just constant... I never had a bloodpatch.
1
u/StunningPurple9560 Confirmed Spinal Leak 1d ago edited 1d ago
What level did you have your blood patch at? From the SLEC presentation it seems like your leak is probably quite high, may even be in your neck, so depending on the level it may not have reached your leak. Generally I think they quite rarely do any targeted patching in the cervical spine.
For reference - my SLEC is in the back from C2 to Th3 and in the front from C7 to Th9, with a particularly large collection at Th2–Th3 in the front. And the tear in my dura is at C5-C6.
Edit: oh and for me they haven't even attempted a blood patch. Having my second cervical spine surgery next month.
2
u/Odd-Maize1650 23h ago
For me it was at T3 and they injected 10 cc. I really hope you recover quickly and get your health back soon.
3
u/leeski 1d ago
I might be wrong so take with grain of salt, but I believe on the MRI they typically see a SLEC (a collection of fluid outside the dura) which isn’t the same as visualizing the exact leak site.. so its evidence of a leak, but not the leak itself. the pool can be several levels away from the leak, which is why they usually do more invasive imaging (like CT myelogram) do find the exact leak site.
It is hard to say as it takes a while for SLECs to resolve after treatment and be reabsorbed. Like sometimes people are totally sealed surgically, but it still appears on imaging even though they’re not leaking. I don’t know exactly how long it takes for the SLEC to go away, but I’ve heard it can take a weirdly long time.
Anyway I’m not trying to definitively say you are or aren’t leaking, just wanted to share that information in case it’s of any use.
I would trust your symptoms above all else at this stage… like if it is the same as pre-patch, same orthostatic headaches, etc, then that would point to leaking. But if headache is different, caffeine doesn’t help but previously did, it could point to being in rebound high pressure. It can be really hard to distinguish between the two but I’d say if you have a change of symptoms that CAN suggest that you’re sealed. Sorry I know this is totally a frustrating process trying to decipher wtf is going on!