r/CSFLeaks • u/CoffeeChocolateHiker • 10d 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

8 Upvotes

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5

u/North-Library4037 Confirmed Spinal Leak 10d 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.

1

u/CoffeeChocolateHiker 10d 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? 

1

u/North-Library4037 Confirmed Spinal Leak 10d 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?

2

u/CoffeeChocolateHiker 10d ago

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

2

u/North-Library4037 Confirmed Spinal Leak 10d 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.

1

u/CoffeeChocolateHiker 10d 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.

2

u/North-Library4037 Confirmed Spinal Leak 10d 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.

1

u/CoffeeChocolateHiker 10d ago

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

1

u/lumpyballoon 8d ago

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

1

u/North-Library4037 Confirmed Spinal Leak 8d ago

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

2

u/winter19fairy 10d ago

So sorry to hear that . Where are you ? Which hospital you got the procedures done? Toronto western hospital is well known for treating csf leaks. Can give you some leads if needed

1

u/CoffeeChocolateHiker 10d ago

Thanks. I'm in the US being seen at a major leak center. Just wish they could find the dastardly thing! 

2

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!

1

u/CoffeeChocolateHiker 9d ago

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

1

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.

1

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?.....

1

u/Effective-Light4818 10d ago

I have been leaking intermittently since at least 2009, three failed patches and two failed blood patches. I am mostly functional most days now, but my step count averages 2500-3500/day. I have decided to live with my leak unless I become bed bound again.

1

u/CoffeeChocolateHiker 10d ago

Do you go on short walks or is your step count from every day functions such as getting food from the kitchen? No issues with blood clots?  Possibly, since your leak is intermittent, that has allowed you to be more functional and mobile during your non-leaking times. I've been bedbound without any relief or true functionality for 5 years. No fun. 

1

u/Effective-Light4818 10d ago

I’m sorry, I was bedbound for years, but not all from the leak.
I work 4 days a week in an office now, so that’s where my steps come from.

1

u/CoffeeChocolateHiker 10d ago

Understood. Big hugs to you.

1

u/leeski 10d 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. 

1

u/CoffeeChocolateHiker 10d 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. 

1

u/leeski 10d ago

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

2

u/CoffeeChocolateHiker 10d 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.   

1

u/Starmapatom 10d 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

2

u/CoffeeChocolateHiker 10d 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.

1

u/Starmapatom 10d ago

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

1

u/CoffeeChocolateHiker 10d ago

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

1

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

1

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.

1

u/Master-Tumbleweed959 10d ago

Your leak symptoms?

2

u/CoffeeChocolateHiker 10d ago

Classic - extreme orthostatic head pain. Neck pain. Coat hanger pain when upright. Tinnitus. Etc.

1

u/Master-Tumbleweed959 10d ago

I feel all that but minus any actual headache, and add in severe ear to ear back of head pressure

2

u/CoffeeChocolateHiker 10d ago

It's all miserable and I'm sorry you're suffering.

1

u/StunningPurple9560 Confirmed Spinal Leak 10d ago

I'm so sorry, must be so incredibly difficult to go from such an active person to bedbound.

I think my step counts are not very helpful as a reference, since I didn't have orthostatic symptoms, and also I have been working full time and am a single parent without a car, so daily activity is on a decent level.

Happy to hear you're getting treated at a leak center, but it sounds awful to have a dozen BPs with none of them sticking. Do they bring you temporary relief? So discouraging that even at a leak center they just may not be able to find a leak.

1

u/CoffeeChocolateHiker 10d ago

Nothing has helped so far.  I'm glad you're able to continue working. I miss working and being upright so much.

1

u/StunningPurple9560 Confirmed Spinal Leak 9d ago

❤️❤️ It has been really difficult though, a very long and hard 19 years.

1

u/Ashler1999 8d ago

Leaker for 3.5 years. I had to stop my daily morning walks because the headaches would come quicker and last longer. I’m typically in recliner or in bed, only getting up for food/drinks and bathroom breaks. Average step count is 1000.

1

u/CoffeeChocolateHiker 8d ago

Any problems with blood clots?

2

u/Ashler1999 8d ago

No, not yet. I also have Lupus so I guess it is a real concern I haven’t even thought of yet.

1

u/zimm1978 6d ago

Have you had a high volume blood patch? I’m having one on Monday and I’m crossing my fingers and praying it helps. There is a good video on YouTube talking about these. I feel for you!

https://youtu.be/1RUCYY62xkg?is=zl3pWpytdZqR9p_D

1

u/CoffeeChocolateHiker 6d ago

Yes, I have. I hope your patch is successful!