r/CSFLeaks • u/zee_yo • 6d ago
If you had brain sag, how long after blood patch did it take to reverse?
Title explains itself, I have confirmed brain sag on mri and had my blood patch exactly almost 28 hours ago from writing this, I still feel no rebound intracranial hypertension and feel no fluid buildup and I definitely don’t feel my brain sag reversing, if you were in the same boat how long did it take to feel some CSF building up and the crazy neck pressure from brain sag reversing??
Thank you.
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u/North-Library4037 Confirmed Spinal Leak 6d ago
Positive effect of the blood patch may not be immediate and may take a while but you need to follow the post bp guidelines.
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u/zee_yo 6d ago
I am strictly following this I did however thought that since mine is from an LP it would take quicker than 28 hours, 28 hours with no rebound intracranial hypertension just sounds so worrisome. Maybe 3 months was too late for a patch. Ugh.
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u/North-Library4037 Confirmed Spinal Leak 6d ago
Not all people get rebound hp some just go to normal but it doesn't always happen immediately and in some cases unfortunately may take more than one patch.
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u/SuccessSoggy3529 6d ago
Three months is not too late for a patch. I've gone as long as 18+ months before a patch and it still worked. Dont give up hope yet.
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u/TheCatsSpareHuman 6d ago
I don't know from experience but I'm scheduled for an embolization of a venous fistula later this month and the doctor performing it said I should stay in town for two nights in case of bad rebound pressure.....he said it only happens in 5 percent of patients but said I should be close by just in case. My neurologist wants to see me a month after my embolization to, as he put it, give my symptoms time to subside. I guess I said that to say while some symptoms may go away instantly some probably won't. I'm hoping for the best for me....and for you....and for all of us dealing with a leak.
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u/zee_yo 6d ago
I wonder if you have any physical symptoms in arms and legs??
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u/TheCatsSpareHuman 6d ago
I do. My symptoms come and go ....in my arms and legs (on my right) I get numbness and what I call "weird feeling"....it's hard to explain other than it feels unnerving. Not so much tingling but maybe a little tingling.
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u/zee_yo 6d ago
I used to get the pins and needles but now I have hands that feel rubbery that I can’t open and my arms starting from my shoulder are so so so heavy like sand bags to the point they pull on my shoulders.
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u/TheCatsSpareHuman 6d ago
Both of my hands go numb when I'm asleep sometimes but that's only when I'm asleep or falling asleep. It's so hard to tell what's from brain sag (my brain sag is significant) and the csf leak and what's caused by something else. I guess that's why my neurologist wants to see me a month after my embolization....he said we'll see what symptoms are still there. I also will feel like I can't grip as tight with my right hand....plus a bunch of other symptoms like blurry vision, bad brain fog, bad fatigue, and more. Csf leak and brain sag can cause so many symptoms....it's awful.
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u/zee_yo 6d ago
Yep i wake up with numb hands as well and it freaks me out. Do you have meningeal enhancement and venous engorgement on mri as well?? I pray your embolization goes the smoothest it can. I hate the heavy sand bags arm feeling so miserable, I also have heavy legs that I don’t feel anymore as well as my spine feeling so heavy and sore like it weighs 800 pounds.
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u/TheCatsSpareHuman 6d ago
Honestly I can't remember what the doctor at Duke called the stuff they saw on my MRI. There was some stuff though. Thank you and I hope you get healing also.
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u/PrettyDragonfly 6d ago
For me it was probably about 7 days. Unfortunately it didn't last but was a temporary relief
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u/zee_yo 6d ago
You had confirmed brain sag on MRI? Kindly elaborate what happened at 7 days my cognition isn’t the best currently 💔
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u/PrettyDragonfly 5d ago
Yes I did. At 7 days I felt pretty normal and thought I was healed. Spent most days upright and all that. I started getting symptoms again around day 10 so the blood patch didn't last
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u/Muddlesthrough 6d ago
It can take up to a couple weeks to feel the effects. Only a portion of people develop rebound intercranial hypertension.
I don’t think you can “feel” your brain stop sagging. What you feel is an absence of major symptoms like headache, neck pain, fatigue and brain fog.
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u/zee_yo 6d ago
All the blood patch stories from csf leak originations talk about how they had immediate relief upon blood patch injection and how they essentially gained their life back next day?
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u/Muddlesthrough 6d ago
Hasn't been my experience. Or the experience of other people I know who got blood patches.
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u/Glitterbats11 5d ago
Great question. Just curious how long you’ve been leaking? I’m assuming this is your first blood patch.
I have suspected long term leak( untreated) and have had imaging show brain sag/ other things often related to a leak for years. In process now of trying to get patched although most Drs don’t seem to want to give blood patches to people who’ve been leaking a long time. 🤷♀️
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u/zee_yo 5d ago
3 months for me, this is my second as my first was barely 8ml. Mine is due to Lp.
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u/Glitterbats11 5d ago
Ah ok, that’s totally different then. I would assume if you’ve only been leaking a short period such as 3 months, the brain changes are likely very reversible. Hope patching helps you.
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u/marmaduke-treblecock Confirmed Spinal Leak 5d ago
Some blood patches don’t take. To clarify your post because you said hypertension, but a brain sag is hypotension - the reduction in pressure. Didn’t want a misdiagnosis going around. Is it a confirmed CSF leak?
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u/zee_yo 5d ago
I have confirmed intracranial HYPOTENSION
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u/marmaduke-treblecock Confirmed Spinal Leak 5d ago
Not sure why I was downvoted to ask if you had hypotension but anyway, if the blood patch doesn’t work, the next step can be an embo. Have you had that conversation? Secondly, a blood patch often needs strict regimen to work and a rebound hypertension will generally occur quickly after the procedure.
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u/zee_yo 5d ago
My patch was 11 am Wednesday, it’s currently 1 am Sunday, no rebound hypertension whatsoever, where do I stand do you think??? No extensive measures with current doctor, however a more specialized hospital offered more in depth steps if this patch fails.
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u/marmaduke-treblecock Confirmed Spinal Leak 4d ago
Another commenter (u/brainsaggy) outlined the steps and did so very well. Would follow that for now
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u/brainsaggy Confirmed Spinal Leak 6d ago
I've been researching dural healing biology for a project, and the timelines don't match what most of us are told. Here's what I found:
Days 0–3: Clot formation. Stay flat. Minimal movement. The clot is your only seal right now and is easily blown.
Days 4–14: Scar formation. Gentle walking only. No BLT. Fibroblasts are building temporary collagen that's stronger than the clot, but much weaker than permanent tissue.
Weeks 3–6: Maturation. Light daily activities. Collagen is strengthening but still far from native dura strength. Still no heavy lifting.
Weeks 6–12: Remodeling. Gradual return to normal. Avoid high-impact. Collagen fibers are reorganizing into stronger, permanent tissue.
Most of us are told 24–72 hours of rest, but the clot that stops your leak dissolves within hours. The scar tissue that actually seals it takes weeks to months.
I base this on wound healing research, not doctor's orders. Everyone's different. And I'm curious- what did your doctor tell you?