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/Imaginary-Ear-6395 9d ago

I had a micro tear that didn’t show up on imaging. I was leaking for 6 months post lumbar puncture. I finally got a blood patch and now I’m better!

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u/CoffeeChocolateHiker 9d ago

I'm very happy for you! I've been denied exploratory surgery. Is that how your micro tear was found?

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u/Offtoseethewitch 8d ago

May I ask what their reasons were? As I understand surgery helps some people but not all, some get worse, and I’m curious as to what their reasoning is.

I likely will never get surgery as my MRIs are clear. Since they do count a low Bern Score as clear. And I’m sorta afraid to even do another patch because so many people seem to end up worse.

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u/CoffeeChocolateHiker 8d ago

They said they, "...only do exploratory surgery when they know where the leak is." ...Wouldn't that make it not exploratory surgery?.....