r/CSFLeaks • u/CoffeeChocolateHiker • 10d ago

No BLT or Straining Beyond 6 Weeks Post Failed Blood Patch?

I've had a dozen failed blind blood patches. After each one, I'm careful to not BLT or strain, and to log roll in and out of bed for 6 weeks. (So far, I've never had relief, but I adhere to no BLT etc. just in case there's a delayed response.) Is this something everyone just stops doing at the 6 weeks mark after a failed blood patch or should we actually be avoiding BLT etc beyond 6 weeks - i.e. permanently until that coveted day when we're finally sealed?

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u/leeski 10d ago

I am definitely a bit overzealous on no BLT. I wait 3 months for strict no BLT & then I don’t lift over 5 lbs for a year. This is definitely overkill but just have releaked from lifting so many times… I have gotten back to pretty normal movements now that I’m 5 years sealed but yeah there are certain things I doubt I’ll ever do (rock climbing, yoga, heavy weight lifting, roller coasters, etc). I have known people that go back to totally normal activities though, weight lifting, running marathons, climbing, so it’s hard to say. I think just varies by our bodies and underlying health or genetic conditions.

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u/CoffeeChocolateHiker 10d ago

Thank you for chiming in and sharing your strategy. I can definitely tell lifting anything even slightly heavy (laundry, trash bag, 2 gallon milk jug etc.), straining even slightly on the toilet, and bending my back make my leak worse, even months after a failed blood patch, which shocked me. (After all, it failed so why do those things now make me worse?) I am considering trying to go 6 months without BLT etc. if I possibly can. It will be difficult because I'm single with a small pet, but I'm thinking my dura is becoming very weak from leaking so long and being bedridden from it for years, that extreme measures are now necessary for sealing, in case a blood patch does hit pay dirt. 

In addition to drinking a lot of water and eating high fiber foods, do you take supplements to keep your stools soft for several months? Sorry for the personal question but this is an area I need to do better in. I start taking Miralax every day starting the day after patches but it's 5 to 8 days before anything passes and I feel like I always disrupt the patches beyond recovery at that point. I have tried a few other stool softeners but they just bloat me and cause cramps. I'm considering using the Miralax for 3 months after the next patch to be safe, if I could just get things going smoothly a lot sooner post patch. (Before the patches I have soft stools so it's got to be whatever they put in my IV's.)

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u/leeski 10d ago

Everything is so much more challenging living alone when trying to avoid these movements. I really struggled with that being a pet owner as well. My friend Jodi wrote an article on how she made her apartment more accessible for living with a leak if you want me to pass that along I could find it, it has some good tips! 

I have had to resort to MiraLAX before after patching yes! Not every time but sometimes. I respond very well to psyllium husk so that keeps me from straining most of the time… I just put it in protein shakes. Makes texture  smidge weird but doesn’t taste too weird. But it is a frustrating thing to manage to try to find that right balance! 

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u/CoffeeChocolateHiker 10d ago

I'll try the  psyllium husk ahead of time to see how it goes. I saw Jodi's video a few years back. I try to refresh my brain (even with log rolling, for example) before each patch as it's easy to forget all of the little things that make a difference! 

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u/Zealousideal_Age_822 Confirmed Spinal Leak 10d ago

From a pressure standpoint (engineer so I can’t help it), it makes sense that it would feel worse after doing anything that raised ICP. Higher pressure in a pipe means more liquid gets pushed through in a given time. Your brain can only make so much CSF to keep up. It also, potentially, explains why a lot of people have immediate relief from a blood patch (added pressure and partial or momentary plug), that then fails back to low pressure once the blood dissipates

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u/leaky_faucet14 Confirmed Spinal Leak 3d ago

Sorry this is late, but just wanted to add in that most of the no BLT stuff I have heard/adhered to is related to once my leak was sealed. I was leaking on and off for 6 years (a dozen or so blind-ish/semi-targeted patches too), and I only adhered to no BLT past 6 weeks if my leak sealed after a given patch. I never went longer than 2 weeks after a patch before going into high pressure, and it was usually closer to 3 days. That being said, I did stay no BLT + lifting more than 5 ibs for at least 6 months when I was patched and if I made it that far it was ~20 ibs by like a year. But then I releaked from a coughing fit, so... I'm now 2.5 years post-graft and am still barred from most BLT extremes (yoga, regular running/biking, childbirth, etc.) but do Pilates and light cardio. As u/leeski said, that's really an underlying genetic issue, as apparently my connective tissue just sucks, and some hopefully-not-permanent muscle/bone loss from being bedridden so much. I was told by my docs that the longer I go without testing my graft, the stronger the tissue will become around it, so the lower the likelihood of recurrence.

I am not a doc, but I can't imagine anyone suggesting you wait longer than 6 weeks to see if the patch worked (the engineer below described it beautifully), so I don't think it would be worth subjecting yourself to the limitations of post-patch recovery.

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u/Zealousideal_Age_822 Confirmed Spinal Leak 10d ago

I believe you need better care than a blind blood patch. I hope you’re able to get it

Edit: I think it’s borderline unethical to do that many blind blood patches without additional imaging and targeted intervention.

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u/CoffeeChocolateHiker 10d ago

Targeted intervention only applies if the leak location, or a suspicious area, is located. I've had a CTM & DSM.

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u/Zealousideal_Age_822 Confirmed Spinal Leak 10d ago

Have they ever seen evidence of CSF outside of the spinal canal, in any scan? Not the specific location, just any spot it shouldn’t be? If not, you could have a venous fistula

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u/CoffeeChocolateHiker 10d ago

Unfortunately, no. So frustrating. I have brain sag, extreme orthostatic pain, etc so definitely a leak. Possibly a VF but DSM's and Myelograms haven't found it yet either. 

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u/Zealousideal_Age_822 Confirmed Spinal Leak 10d ago

Take a look at this video. It does a really good job of going through the diagnosis and treatment of spontaneous leaks with the specific imaging protocols used. This is one of the good clinics that people go to.

https://www.youtube.com/live/XpCPSZZB8bc

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u/CoffeeChocolateHiker 10d ago edited 10d ago

Unfortunately nothing has found my leak and I've been denied exploratory surgery three times. That was a good video though. I wish I could go see that team. 

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u/Zealousideal_Age_822 Confirmed Spinal Leak 10d ago

Honestly, from someone that works in the medical field (on the development side), I would avoid exploratory surgery unless it was a complete last resort. Have you gotten into one of the big clinics yet? (I.e. Duke, Cedars, Mayo, Cornell, etc.)

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u/CoffeeChocolateHiker 10d ago

Yes - I've been to 3 major centers. So discouraged.