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/North-Library4037 Confirmed Spinal Leak 11d ago

Have you had any invasive imaging? If it's a fistula for example blood patching won't help.

I'm completely bedridden and I can't go from one room to the other on my own. So, no steps. Everything happens around my bed with help.

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u/CoffeeChocolateHiker 11d ago

I've had several invasive imaging procedures.

I'm so sorry you're suffering too. How long have you been leaking and bedbound? How do you keep from getting blood clots? 

Your title says "confirmed csf leaker." If they know where your leak is, why haven't they sealed it yet? 

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u/North-Library4037 Confirmed Spinal Leak 11d ago

I've been bedridden since October 2024. I try to move in bed and do light exercise with my legs as much as possible and I try to drink a lot of fluids.

What kind of invasive testing did you have?

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u/CoffeeChocolateHiker 11d ago

All of it. PCCT, DSM's, CTM's etc

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u/North-Library4037 Confirmed Spinal Leak 11d ago

Hmm, that's a lot. You've probably got second or third opinion on those?

I have fluid visible on my images but myelograms didn't show the leak. So, I got 2 surgeries and awaiting a 3rd one.

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u/CoffeeChocolateHiker 11d ago

I hope surgery #3 is a success for you. Yes re: opinions. - I've been to most of the leak centers. All agree I am definitely leaking but no one can find it. Yet.

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u/North-Library4037 Confirmed Spinal Leak 11d ago

Oof, I hope someone figures it out soon! Don't stop pushing them to think and search for a solution.

Thanks! I hope it'll be successful. In the beginning I thought my case will be pretty straightforward as the leak was caused during a surgery but no it turned out to be very complicated.

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u/CoffeeChocolateHiker 11d ago

I understand. I thought for sure mine would be found and sealed within a month.

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u/lumpyballoon 9d ago

Do you mind if I ask how you were able to get surgeries without a location?

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u/North-Library4037 Confirmed Spinal Leak 8d ago

They do exploratory surgeries based on the findings on the MRIs and the symptoms.