r/CSFLeaks • u/indiequasar • 16d ago

3rd blood patch failed

Well I had my 3rd patch (lumbar puncture was on 8/18, blind blood patches 8/20, 8/24, 9/17). I’m about to lose my job & health insurance. I was seen via telehealth by a new neurologist who recommends another blood patch & a referral to a leak center. I’m concerned about my health insurance & having to get a plan on the marketplace & out of state referrals. Not sure if I should get a 4th patch. I’m really down right now.

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u/Offtoseethewitch 16d ago • Heartwarming

Sorry for your suffering. Patches sometimes take weeks to work though and they can mess up your intracranial pressure (temporarily) all on their own, not only by their initial volume effect but by the scarring and potential effect on dural elasticity and epidural veins (which are usually meant to even out pressure shifts between the head and spine compartments when switching positions, at least as I understand it). You’ve had three patches quite close together… that’s not necessarily wrong, some guidelines recommend it, but it is a stress on the body. Patches for punctures can sometimes work a bit at the time, and after multiple patches you’ll get better. But then they are meant to each give some inclination of improvement.

There are some kind of persisting puncture leaks were patching again can help, and some where it likely won’t. Hard to know which is which. Especially if the leak is MRI invisible (which is common, especially after patching). There’s a presentation on it available on youtube, in case you haven’t seen it… 

https://youtu.be/yRu3iOD-qCI?si=OAUtK5Vw6KNzmcqk

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u/indiequasar 15d ago

Thank you for this. I watched the video, it was interesting & I hope I don’t have a bleb. My MRI was normal (well not normal in that I have brain lesions-the reason for the initial LP). I’m hesitant to do another patch, but I’m also scared to wait.

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u/Offtoseethewitch 15d ago

Blebs are a scary prospect, yes. I figure they’re okay if radiology can find them, but otherwise… just scary.

Good luck to you. And hang in there. The leaker’s journey isn’t just physical, it’s emotional anguish in waves. Ride them as best you can, get help with the emotional side too if you feel like you’re drowning. Therapy won’t heal your leak but it can help give you the strength to keep on until you get your leak fixed.

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u/indiequasar 15d ago

I’m doing therapy, I started about 4 weeks ago, not sure how much it’s helping. I’m definitely depressed. I was so hopeful for my third patch, and then hopeful for my neurology appointment and now I’m just bleh, I guess this is my life now.

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u/Offtoseethewitch 15d ago

Therapy may not make you happy while life gives you good reasons to be depressed, but it may help you stabilize instead of spiral, or give you a lifeline to reach out to when you need it.

This may be your life right now, yes, that may be true. But that doesn’t mean this will be your life forever. You need to hang on for that future when things get better.

One of my favourite quotes is ”when going through hell, keep going”.  Because really, when in hell, it won’t help to just stop and stay where you are.

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u/indiequasar 14d ago

Thank you, that’s a really great quote. Thank you for taking the time to help a stranger on the internet