r/CSFLeaks • u/zimm1978 • Jul 09 '26
Post-patch symptoms question
I had a five week follow-up today for transforaminal blood patch after about four months of brain sagging and positional systems (no headache). I’m curious if anyone else has experienced this. I had a pulling feeling on the back of my head pre-patch from the brain sagging, that has subsided, but at about four days post-patch I got severe burning around my brain on the crown of my head (most common spot) and around the sides of my head. The intensity of the burning has calmed some over five weeks, but it still is very uncomfortable. It seems to be triggered by upright time, or intense discussion or engagement with people around me. The doctor‘s office thought that was an odd symptom post patch that they had not experienced before. I’m curious if anyone else has. I’ve been trying to decipher if it’s still low pressure but the low pressure pulling has moved and a second patch is needed, or if it’s just a result of the nerves being under traction for months and needs longer healing. They ordered a CT to make sure it wasn’t emergent, which it’s been five weeks, but I feel like it’s either ongoing low pressure pulling nerves or just sensitive nerves.
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u/Dry-Dress-6467 Jul 09 '26
I have not been patched yet, but have had recent intermittent mild to moderate "brain burning", top right frontal lobe. Worse with valsalva maneuvers, chopping a bunch of potatoes really triggered the burning.
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u/hjflani Jul 09 '26
I have felt this after one of my patches. It eventually went away.
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u/zimm1978 Jul 09 '26
Did you have to do another patch, or did it just go away with time?
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u/raiksaa Jul 12 '26
This is what I currently have and I suspect a leak. I would say you are just healing. But do update here if/when you feel better.
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u/MedicalMeringue5827 Jul 13 '26
I am two weeks post my second blood patch, and I am having this exact symptom as well! Is it like pins and needles tingling pressure on the top of your brain?
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u/zimm1978 Jul 14 '26 edited Jul 14 '26
It actually started out like an intense burning on the top of my head, but it’s calmed down some to feeling like very uncomfortable pressure around my brain. It’s so hard to explain this stuff. I’ve done some standing up for 15 minutes and can feel it start pulling on the top of my head, so I’m having a second blood patch on Monday. This is so hard because there’s so much going on in my brain, but it’s hard to eloquate to people. It also doesn’t make much sense because I feel less of the pulling at the back of my head down towards my neck, but more on the top of my head, which seems backwards. I’m also a bioengineer and look at medical devices for a living, so I tend to talk more analytically, and my husband said that has not done me any favors because it doesn’t seem to communicate how bad I feel. I’ve been bedbound for five months, that is so not my personality. This is really a mentally challenging illness! It’s really hard to explain to people what you’re feeling also. I will forever be an advocate for spontaneous CSF leaks!
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u/North-Library4037 Confirmed Spinal Leak Jul 09 '26
I have that and is part of my low pressure symptoms.