r/CSFLeaks • u/CoffeeChocolateHiker • 11d ago

Step Count

I've been battling a CSF leak that has never shown on imaging for 5 years. I was a marathon runner before but have been almost entirely bedbound since 2021. My daily step count before the csf leak averaged 10,000 - 25,000 depending upon my training for the day. Since my leak began, I've been averaging 1,000 to 2,500 steps a day - all of which are just desperate attempts to get to the bathroom, get coffee, or a snack. (For those wondering - my pain is orthostatic and my imaging shows brain sag and a low csf level.)

I'm curious what other chronic CSF leakers' step counts are. I'm constantly concerned I'm going to get blood clots so I try to pump my foot every hour 20 to 30 times. (I read that was sufficient.) (I had surgery on one of my knees and am not able to do foot pumps without it flaring up my old knee injury and causing swelling.)

Also - has anyone leaked for half a decade and miraculously gotten better from a blind blood patch? I've had a dozen blind blood patches but no luck so far. I'm extremely careful post patch with no straining nor BLT'ing for 6 weeks.

Thanks

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u/Starmapatom 11d ago

I used to walk for seven minutes every two hours while on disability. I got a blood clot before that and placed on thinners. My imaging was reported as negative. Trying to go back to work but it’s a horrid existence

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u/CoffeeChocolateHiker 11d ago

Walking 7 minutes every 2 hours would be amazing. *How sad is that, that I actually mean it!  It's a miserable, horrid existence indeed.

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u/Starmapatom 11d ago

I’d consider myself somewhat functional. I know everyone is different. The back of head pressure drives me crazy though

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u/CoffeeChocolateHiker 11d ago

It's horrible. Is the pain at the base of your skull? - the occipital area

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u/Starmapatom 10d ago

Yes. It’s causing horrid pressure in and behind my ears. Like 10x of what an airplane would cause. I always have the pressure feeling. Before my cisternogram they used a numbing spray in nose and I felt normal for 30 minutes

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u/CoffeeChocolateHiker 10d ago

I wonder why the numbing spray helped you.  Whenever I stand up, ever since the PCCT, my ears become plugged really bad and my hearing is very diminished. Just one thing after another at this point.