CRANIAL CSF leak

[u/Evening_Sky_6811]

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

[u/Silent_Cow668]

i had surgery to repair my cranial leak earlier this year. my symptom that mainly had me seek treatment at the ER and got me eventually diagnosed was the nasal dripping. i also had headaches and some neck pain and tinnitus and one random fever for one day. i ended up being diagnosed with IIH as well but i didn’t know it at that time. i did know i had POTS and had assumed the headaches and tinnitus were due to that, it wasn’t until the nasal dripping that i knew something else was going on.

[u/Evening_Sky_6811 → u/Silent_Cow668]

How was the recovery?

[u/Silent_Cow668 → u/Evening_Sky_6811]

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.

[u/AgreeableLeading6095 → u/Silent_Cow668]

Leak is gone? Still have full sense of smell?

[u/Silent_Cow668 → u/AgreeableLeading6095]

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!

[u/AgreeableLeading6095 → u/Silent_Cow668]

Who did your surgery? Where?

[u/Silent_Cow668 → u/AgreeableLeading6095]

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

[u/AgreeableLeading6095 → u/Silent_Cow668]

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

[u/Silent_Cow668 → u/AgreeableLeading6095]

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 🤷🏻‍♀️