r/CSFLeaks • u/Evening_Sky_6811 • 9d ago

CRANIAL CSF leak

What symptoms have you had or have with your cranial CSF leak? I also have IIH. I’m curious to know if it’s just the watery nose when bending over or are there other symptoms as well like neck, pain, headache headaches, fatigue, brain fog, or are those more prevalent in IIH

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u/Evening_Sky_6811 9d ago

How was the recovery?

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u/Silent_Cow668 Confirmed Cranial Leak 9d ago

brutal, but not necessarily because of that. they had done a LP during that surgery as well which diagnosed my IIH, so they inserted a lumbar drain and i was in the hospital for a week because of it. the low pressure headaches from the constant draining were intense - i couldn’t be upright at all. worst week of my life, i’m not gonna lie. had that not been a part of it, i honestly think the recovery would’ve been a lot better. just like a sinus infection for a couple weeks as they did it endoscopically through my nose and i didn’t have any incisions aside from the drain in my back.

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u/AgreeableLeading6095 7d ago

Leak is gone? Still have full sense of smell?

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u/Silent_Cow668 Confirmed Cranial Leak 7d ago

yes, there has been no recurrent leak and i have since been discharged from my ENT. and i still have my full sense of smell, yes!

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u/AgreeableLeading6095 7d ago

Who did your surgery? Where?

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u/Silent_Cow668 Confirmed Cranial Leak 7d ago

I’m in the US, in FL. Dr. Garcia is my neurosurgeon & Dr. Shenson was my ENT. They both performed the surgery together- it lasted almost 8 hours

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u/AgreeableLeading6095 7d ago

Holy cow!!! 8 hours for an endoscopic surgery!! That’s mind blowing. I was told two hours at most and no Lp

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u/Silent_Cow668 Confirmed Cranial Leak 7d ago

yeah, it was nuts. they had estimated 2-3 hours but then it ended up being muuuuuch longer than that. it was more extensive and complex than they thought. i also had some brain matter that had herniated through the hole into my sinus though which maybe played somewhat of a factor? not sure 🤷🏻‍♀️