Yesterday, I met my neurologist. You know it's not going to be a great meeting when he gives you a wide-eyed stare and asks, "How did this get so bad?"
In July, I had emergency surgery to remove a cholesteatoma. A cholesteatoma is a benign tumor found in the ear that likes to nomnom on bone. Most are the size of a pea; mine was the size of my palm. It was the largest my doctor had ever seen. When I came out of surgery, my ENT doctor told me that there was a tiny hole in my skull that needed to be repaired. Cool, no problem. I can handle that.
What he didn't tell me is that in addition to the hole, a wide band in my skull has been dangerously eroded.
Oh.
What I didn't understand was that there is still cholesteatoma on my skull, chomping away, but it's too close to my dura for my ENT to touch.
Oh.
What we didn't cover was that the cholesteatoma is putting pressure on my temporal lobe and I am a high risk for a seizure in the middle of surgery.
Oh.
My neurologist says he's probably going to drain my cerebrospinal fluid, which will keep me in the hospital for a week, including three days in ICU with no contact with anyone under the age of 16.
Ugh.
No driving for six weeks.
...
I can't pick my son up for six weeks.
!!!!
I went from being pretty nervous about this surgery to WTF AAAAAAAAAAAAAH in about six seconds. Yes, I know my neurologist is scary and likes to use big words. That being said, my ENT didn't given any indication about the still-nomming cholesteatoma, the state of my skull, and the dangers of surgery. I can't hold that against him - brains aren't his thing. Still, a little head's up (ha.) would have been nice.
Last night, I screamed and sobbed the entire way home from school. This morning, I opened a letter from my insurance company stating that as of 10/29, they will no longer be reimbursing Hartford Hospital. My surgery date is scheduled for 11/1.
Cue panic attack. Lots of snot and hyperventilating.
If you know me, you know I like lists. I love outlines. I like to know that this is going to happen, then this, then that. I feel so wildly out of control right now. Thankfully, I have my family and school to keep me moving forward or you'd probably find me in a corner, sucking my thumb. I am blessed to live in a country that I have access to competent healthcare professionals. I am blessed to have insurance. I am blessed to have a supportive family. I am blessed to have beautiful children that love me and a husband that thinks I'm damn sexy. But I'm also really fucking scared.
The brain surgery is going to happen whether I like it or not. I'm hoping I figure out a healthy way to deal with this all in the mean time.
If you're reading this, it means you care a little about what I'm going through so thank you. If you can spare some peace, love, and healing energy my way, I'd appreciate it.
