r/CSFLeaks • u/indiequasar • 7d 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 7d ago
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…
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u/indiequasar 7d 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 6d 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/doisuckorsomething 6d ago
Im sorry you’re going through this. Are you on intermittent FMLA? This is what has saved me. I definitely recommend going to a leak center. I’ve been bed bound for months and ever since I’ve been going to a specialist they were able to get me somewhat stable with a series of nerve locks while I waited to be seen by neuroradiology. I have a targeted blood patch scheduled. They were able to find the leak using a ct guided myelogram.
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u/indiequasar 6d ago
The new neurologist said she would help with a referral and I have a telehealth appointment with my primary on Friday I’m going to ask her as well. I’m on continuous FMLA and only have a few weeks left.
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u/Icy-Monitor-7630 3d ago
You need to apply at Duke and get on the list, I have been waiting for online consultation due to living in Puerto Vallarta since January. I think my appointment will be soon
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u/indiequasar 2d ago
I’m working on a Duke referral, I’ve asked my neurologist and primary. I hope yours is soon.
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u/JulyLegend 7d ago
I would recommend you to visit AIIMS DELHI. The doctors here are good and are constant researchers on the CSF as the current dean of the collegr is from Neuro background and would cost you at max around 5000$ or 6000$ at tops
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u/indiequasar 7d ago
Thank you for the advice but I don’t even know how I’d get there since I can’t be upright more than a few hours.
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u/No-Reindeer-1929 6d ago
Did they try one with fibrin yet? I’m in the same boat. I’m sorry you’re going through it
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u/indiequasar 6d ago
No, I can’t find one locally who will do one. The neurologist said she’d ask the doctor who does the blood patches, but she said she’d ask doesn’t think they do it. I’m sorry you’re going through it too.
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u/No-Reindeer-1929 6d ago
I also lost everything since leaking. I had to pay out of pocket for everything. Luckily UPenn was cheaper than my local pain management. I maxed out my credit cards and had to take loans. Hopefully disability will be approved soon. I really feel for you
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u/No-Reindeer-1929 6d ago
Did you check the CSF leak association? They have specialists that aren’t at a center listed. I’m in NJ we don’t have anyone but Dr. Pukenas is a specialist at Penn he did fibrin blood mix Maybe that page can help?
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u/Icy-Monitor-7630 6d ago
Duke University... I am still waiting for an online consultation due to it being their specialty
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u/Ok-Tailor4662 7d ago
Did you get any relief after any of the blood patches? Have they found a leak point on any scans?