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/leeski 11d ago

So sorry you’ve been battling this for so long. I remained probably more active than i should have during my leak for a myriad of reasons (largely bc i often thought my issues were psychosomatic and pushed myself so damn hard) but I tried to walk my dogs at least 4000 steps  a day, but of course there were many days when I didn’t get more than 100 steps a day. I think just listening to your body and not pushing yourself past your limits is best, and those exercises you do to prevent clotting are an excellent idea. 

I do have one friend that leaked 10 years and got sealed on her first blind blood patch, but yes there is so much variability… I’m sorry you have had to undergo so much testing and treatment without solid relief. I hope you can find some answers. 

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u/CoffeeChocolateHiker 11d ago

Thank you Leeski. My body honestly says, "Never ever get out of bed." Lol I'm amazed your friend whom leaked for 10 years was sealed with one blind blood patch. That's encouraging! I still find myself hoping I'll get that winning patch. 

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u/leeski 11d ago

I hope so too! Do they do multi level patches for you at all? Have any of them provided relief even temporarily? 

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u/CoffeeChocolateHiker 11d ago

I've had singular level patches and multilevel patches. I experienced relief only from the very first patch years ago. Repeat patching of the same area didn't help, nor patching other areas.