That is one seriously fucked up sentence right there. Unfortunately, it's the one I heard last night before being discharged from the ER around 1am.
Yesterday was, hands down, the best post-op day I've had so far, physically. I woke up at 5am to (sadly) spend a half an hour with my dad before the airport shuttle picked him up at 5:30, went back to sleep for a few hours, got up and showered, paid some bills, and did some chores before my mom arrived around 11am. We had lunch, caught up, took naps (mine, which I thought would be around 45 minutes, lasted 2 hours), and then headed out.... OUT. As in, left the apartment! It was grand. We went to my favorite little hole-in-the-wall used DVD store and I got yet another season of ER (irony abounds) and yet another season of X-Files for a grand total of $21, then stopped at my favorite fairly-good-for-you "fast food" place (the Utah equivalent of Panera, though still not as good), came home, ate dinner, and started making our way through the first disk of ER. Throughout the entire day, I was feeling awesome -- headachey, but less so than the last few days, barely any nausea all day, a good amount of energy, and generally just in a good mood.
Around 7, I started feeling flushed, having chills, and generally just feeling gross. I took my temperature a few times and it fluctuated between 98.8 and 99.3, which for me is pretty high (my normal is on the low side -- usually around 97.4 or so). That, combined with the area of fluid behind the top of my incision that I had noticed the day before, and I was decently freaked out. I had tried to explain the fluid build-up to my surgeon's nurse over the phone the day before, and she assured me that it was likely just one of the many weirdnesses that happen after brain surgery and would likely continue for at least another 4 weeks or so. I tried to be okay with that and roll with it (there's another post in the works regarding the whole "trust the medical professionals" situation), but kept feeling like I hadn't adequately described it and it wasn't just the normal fluid retention/swelling. I'm a worrier (shock and awe) and just didn't feel okay about the low-grade fever plus the area of fluid. So after some debate, we decided to go to the ER around 8:30 and get it checked out.
They brought me back almost immediately once we got there (apparently starting with the line, "I had brain surgery two weeks ago and..." gets you noticed pretty quickly), and I was pretty quickly swarmed with people asking what was going on and postulating about the ten million things it could be. I had brought my water jug in with me and one of the nurses (who was very sweet, for the record) nonchalantly said, "Oh hon, don't drink anything. You might need a second surgery tonight." ...and then she smiled and walked out. Cue my little meltdown. I had an ER doctor and the neurosurgery resident come in and say that it was good I came in since my type of surgery has the potential (more than other types/locations, I guess?) to lead to hydrocephalus ("water on the brain" -- basically a build-up of fluid that ultimately leads to brain swelling) which often presents itself as a localized "bulge" of fluid on or near the incision site. The other obvious concern, given that they opened my brain two weeks ago, was bleeding. So these docs are throwing around the terms, talking about prepping for a second surgery tonight or early tomorrow, and blah blah blah. Meanwhile, the very sweet group of nurses I had were trying desperately to get an IV started -- six pokes later, they finally got one using an ultrasound machine, took seven vials of blood.... aaaand then the IV wasn't used for the rest of the night (no fluids or pain meds; I certainly understand the need to keep it in, I was just bitter that all the poking happened and then we didn't even end up needing to use it. Alas...).
After three hours or so, a very sweet and chatty transport chick brought me down for a CT scan, which lasted a grand total of about 4 minutes (amazing in comparison to the 45-60 minute MRIs I've gotten relatively used to over the past year). Then she brought me back to my room and the waiting continued. After what felt like ten million years (time seriously crawls when you're wondering if your brain is filling with fluid and/or bleeding and you might be having brain surgery dos), the neuro resident finally came in... with a concerned look on his face. Likely noting my change in facial expression from worry to fear, he said, "Oh, you're fine."
The CT looked fine in terms of there not being any bleeding, fluid, or significant swelling. What he thinks is going on is indeed not the typical bit of swelling around my incision (I think this is where I failed when trying to describe the fluid build-up to the nurse over the phone -- I said it was at the "top" of my incision, but didn't really emphasized how localized and LARGE it was). They left a piece of my skull out after the surgery (yeah, correct, I have a permanent HOLE in my skull. And yes, I can feel it.), and the doctor said what probably happened is that there's a tiny hole in the dura (there are three layers of "tissue"/meninges around the brain and the dura is the outermost of those layers) and there's fluid leaking out of it, which is now collecting behind my skin. I have a 2ish inch "bulge" (I hate that word) at the very, very top of my incision that's very clearly filled with this fluid. It's gross. But apparently, it's okay. He said it will probably take several months, but eventually, that tiny hole in the dura will close itself up and my body will reabsorb the fluid. But it is, indeed, going to take awhile. I have to keep an eye on it to make sure the area doesn't get significantly bigger, doesn't travel downward (i.e., build up lower down on my incision), and that my headaches don't get significantly worse... otherwise, it just it what it is and my body will deal with it on it's own. It unfortunately means probably several more months of not being able to lie with any pressure on the back of my head (my incision is still very slightly tender, but when there's any pressure on the "bulge"... I think we're going to name this son of a bitch.... I can FEEL and HEAR "crackling. Knowing that I have an area of open skull directly below that? So disgusting and disconcerting as hell.).... otherwise, it's just a bump in the healing process (no really lame pun intended).
So yeah. I have fluid leaking out of my brain and collecting behind my scalp. But it's okay. So wrong on so many levels.
Just for the record, I really wouldn't recommend brain surgery if you're looking for a good time on your day off. This is pretty lame, in general.
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