Monday, August 4, 2014

{{ Brain Drops Keep Fallin' From My Head }} or, why is my cerebrospinal fluid dripping out of my nose?

I'll start this by saying that I'm making a lot of jokes about this because in reality it's scaring the shit out of me and it's so fucking bizarre that the easiest way to deal so far has been by nervously laughing and making jokes about it. I wanted to write about this because when you google it there's a LOT of scary info that you have to wade through before you find any personal experiences with it. I guess I just want to add mine to the mix, even though I don't have an official diagnosis yet. In early July I started noticing that when I lean forward or turn my head upside down my nose would start dripping like crazy. The first day it happened I thought 'oh great, I'm getting sick' even though I felt completely fine. I waited for cold symptoms to show up but they never did, yet the drippy nose kept up. After about 2 weeks of it happening at least once a day I saw my doctor. (This was after googling it and coming up with some pretty horrific results about cerebrospinal fluid leaks -- literally brain fluid dripping out of your nose). Luckily I was able to show my doctor exactly what was happening and she agreed that while the likelihood of it being a CSF leak was low, there was really no other explanation for why this is happening. Around this time I also started paying attention to exactly how often it was happening (1-2 times a day) and whether it was coming from both sides or just one (just the left side).

My doctor got me a stat referral to an ENT who I saw the following day. The ENT examined the fluid which I easily produced by leaning forward. Odorless, colorless, just like water. (Just like spinal fluid). She looked up into my sinuses with a long scope and said they were wide open and beautiful looking, confirming my assumption that if this were some sort of allergy situation there would be evidence of irritation in my sinuses. The fact that I have no other cold/allergy symptoms is what is concerning, but the good news is that I don't have the debilitating headaches usually associated with CSF leaks. Or is it that I'm just catching it early and I went to knowledgeable doctors? I read that most CSF leaks take over a year to diagnose. Or maybe I just have a small leak? Is a small leak ok to live with? How much brain juice can I spare? I don't really have answers to these questions yet, but hopefully this will all become clear soon. My ENT set me up with a CT scan later this week, and in the meantime I'm collecting the fluid in a little jar that I keep next to a dead hummingbird in my freezer (just in case anyone want to play "who has the most bizarre shit in their freezer" I will win for sure.) They can test the fluid to see if it is in fact spinal fluid, but they need a pretty good amount -- so a few times a day I'm drip-drip-dripping into the jar.

The not-knowing is driving me kind of crazy, but I've been trying not to dwell. Trying not to google this any more, trying not to jump to conclusions. Trying to put phrases like "brain surgery" out of my head. Trying to enjoy this beautiful summer and make the most of it.

Because really - THIS COULD BE NOTHING! - Like I said, the not-knowing is making me crazy.


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