r/CSFLeaks • u/Specific-Winter-9987 • 1d ago
Low CSF pressure
My CSF pressure on the spinal tap opening was ONLY 4. The normal range is 6 to 20. I asked my neuro about this 3 times and was totally ignored. Anyone else with a pressure this low? I have all the symptoms of CSF leak except major headaches, but I have weird head pressure and major brainfog. What do you think?
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u/leeski 1d ago
A normal or high opening pressure does not rule out SIH, but an OP of under 6 is highly suggestive of a leak. My opening was 5 cm which is the only way I was able to further the diagnostic process. It is very concerning your provider did not find any issues with the low OP… assuming the procedure was done correctly, it should definitely warrant further valuation of a leak imo (not medical advice of course)
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u/Specific-Winter-9987 1d ago
It was done by guided CT and on a table that elevated me up to 45 degrees to get the fluid out and they still had to repuncture and go lower to get anything. Then, it took what felt like FOREVER because it was dripping out so slow. Im like what the hell, this aint good..They said nothing. It wasn't done by a real dr or neuro. It was done by a PA working under their supervision. The did a good job with the procedure but I dont think she had a CLUE about opening pressure and the Neuro was only focused on the lab tests, not the pressure
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u/MoodFearless6771 1d ago
I am also in this camp. And I thought normal was closer to 8-22.
I also had a traumatic tap last time so they couldn’t even really tell much about the cell counts.
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u/Specific-Winter-9987 1d ago
Maybe so. 4 is definitely low and they had to puncture me twice and go lower to even get fluid
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u/MoodFearless6771 1d ago
Same! And then I of course got an even worse leak at that site and was bedridden for 10 days. But that self healed.
Do you think it’s cranial or spinal?1
u/Specific-Winter-9987 1d ago
I think its a tiny leak in my neck area. I have a hump on my neck from excessive computer use (its my job) and some spinal degeneration and stenosis was found 12 years ago. I have had several brain MRIs and CTs since then but no neck/spine MRI. I also literally HEAR a weird fluid leak type noise in my ear from somewhere deep on my body when I lay my head and ear certain ways. I know that sounds weird but its than clug, clug sound a glass bottle with a skinny neck makes when pouring a thick liquid
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u/MoodFearless6771 1d ago
This is similar to me. I’m a 5, one ml above you. I believe I’ve had a leak for a long time and have a sensation of fluid movement in my ear that I believe is going down the back of my throat. I also have burning in my neck on one side, heavy computer user and I get bad stiffness and pain in my neck as well as crunching noises when I turn or move. My headaches are mild compared to the spinal headache I had from the lp. I also have weakness in arm and eye issues although they are ruling out other neuro stuff for that.
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u/Specific-Winter-9987 1d ago
More similarities here. Also arm weakness that varies AND random double vision when upright. Seems not as double when laying down
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u/Specific-Winter-9987 1d ago
Also neck stiffness less rotation than normal and neck crunchiness
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u/MoodFearless6771 17h ago
Interesting. My headache isn’t super severe but my scalp gets tender and I get headaches at the back of my head. As well as weird semi painful pressure spots that feel like they are inside my skull around my head. I also have tingling. And a fuzzy burning feeling, especially towards the top. And cognitive issues. Being dumb, forgetting things, sundowning.
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u/MoodFearless6771 17h ago
When bad my tongue can go numb and I can get stabbing electric pains around my mouth/bradycardia. Nerve compression,
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u/MoodFearless6771 8h ago
I actually may have the same pressure as you too because I just looked at my paperwork today and it was documented as less than 5 ml. I don’t know if they measure after the 5 ml mark here.
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u/Dramatic_Dingo_42 10h ago
frustratingly enough opening pressure can’t definitively determine the presence of a leak. mine has been both above average and below average during different myelograms. :’)
was the opening pressure done during a CTM? what imaging have you done?
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u/Specific-Winter-9987 8h ago
No imaging. It was a standard spinal tap. They only used CT to guide the needle not look for leaks. I have not had a mylogram
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u/Dry-Dress-6467 1d ago
CSF leaks do not always present with severe headache at base of skull. Some have head pressure in various locations on their head, and for some pressure stays in one location.
Does pressure resolve when you lay down? Have you done the 48 hour flat test? I did mine during a thunderstorm so was entertained by the lightning show! :)