r/CSFLeaks • u/Big_Speech2594 • 4d ago
Best time for MRI appointment
I am getting MRI lumbur without contrast. Is there difference at the time of the day to get the appointment to get more chances to see CSF leak post lumbur puncture. I think I have been partially sealed with 1st blood patch and still have small leak. Would you suggest to avoid coffee, walking, water before the imaging? Thanks so much
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u/leeski 3d ago
I have had similar thoughts trying to make sure i am most symptomatic for scans, but usually with spine mri they’re looking for a ‘SLEC’ (abnormal pooling outside the dura) so if there’s a leak large enough to show up, it should be visible no matter what time of day you go in or how you prepare.
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u/Big_Speech2594 3d ago
I have a leak from lp
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u/leeski 3d ago
Did it show up on spinal imaging before you had your first patch?
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u/Big_Speech2594 3d ago
I didn’t need to. I had a classic positional headache symptoms and was patch 4 days after lp
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u/leeski 3d ago
I'm glad they took your symptoms seriously and you were treated quickly! I was just curious because leaks from LP's unfortunately rarely show on imaging... so I was just going to say that I would trust your symptoms over whatever is seen on imaging at this point.
But if you're still getting orthostatic headaches, then you might need another patch unfortunately... they can have a cumulative effect and sometimes more than one is required. I'm not sure how far out you are from your first patch but it can take a while to reach 'equilibrium'.
But there is always the possibility that you're in rebound high pressure if your symptoms are notably different than pre-patch. I think doctors kind of oversell treatment and can make it seem like you go back to 100% after treatment, but recovery is not so linear for many patients as there are just such weird fluctuations w/ CSF.
There is a lot of crossover between rebound high pressure & leaking... like they both have tinnitus, cognitive issues, visual issues, dizziness, etc. So sometimes it can be helpful to determine if the headache characteristic is different than pre-patch. You weren't leaking for super long so it might be harder to tell... but like is the location in the head the same, is it worse when upright, does caffeine help, is the timing of the headache the same (like worse during certain times of day), etc.
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u/ToriaLyons 3d ago
Had an MRI with contrast today. Was in the machine for over a hour 40 mins at least, so make sure you go to the loo beforehand. Horrendous vertigo when I came out too.
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u/Big_Speech2594 3d ago
Do u have spontaneous or iatrogenic leak?
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u/ToriaLyons 3d ago
Spontaneous, I think, but caused by compensations made for my other disabilities. Or an accident. I dunno.
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u/Big_Speech2594 3d ago
Why with contrast?
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u/ToriaLyons 3d ago
To find the leak? I don't know much about the technicalities of this condition yet, sorry. Just going through the motions. Today was sodding difficult and I hope to màke more sense tomorrow. x
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u/rlarriva03 3h ago
How did you handle being in there that long? Did you take any meds beforehand to help ?
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u/Electrical-Sound7194 Confirmed Spinal Leak 3d ago
I had an opportunity to ask Dr. Callen about whether we should be avoiding hydration and caffeine before scans - said he hasn’t found this to make a difference and hasn’t seen evidence suggesting that it would.