Seven Weeks Post-Op

Haven't been much in the mood for posting this, quite honestly, but some important things worth noting have gone on in the last week. At this point the blog is going more from a "to inform family and friends" goal to one of "to inform other patients of what I went through" and to be a reminder to myself.

So friday I had the postop visit with Dr T. It went basically as I expected, which is to say it was too short to ask my questions and basically was a quick look-over and a "you look good, no more restrictions, see you in 6 months". Really, I got there at 8:30 for a 9am appointment, got called back at 9:20, and was in there maaaaybe 10 minutes, tops. I decided I'm going to get my medical records for the surgery day so I can just red the report myself to answer most of my questions. He asked what things were bothering me most, and I said my face as it's the most obvious and is the source of a lot of issues, but that's pretty much all we got to talk about on my list. The good news is, he predicts the left side of my face will be mobile again in about 9 months to a year. Sounds like forever, but I guess it's better than "You will need surgery to get it to work again".

Other than that, he did a quick neuro exam and cleared me for everything. This didn't bring the reaction from me one might expect. Instead of "oh yey! I'm fine and can do stuff!", I cried. And cried. Until I took a nap. It's hard to explain why exactly it was so upsetting, but when I posted about it on the Acoustic Neuroma Association forums the other patients seemed to understand, so I guess it's not uncommon. The best way I can think to put it is, I'm tired of people telling me / acting like I'm fine and normal, when I don't feel fine and normal. I know I'm "high functioning" or whatever the right word is, but the fact is, I was much more awesome before, and I don't feel like I'm the same. I do'nt know if I ever will be or if I'm supposed to be. Now, maybe I can get through just fine, but I'm still running the shopping cart into things at the grocery store (why do they have to have so much stuff in the aisles, anyway?) and watching movies without completely understanding what's going on. To me, that's not fine and normal.

I now have an "Executive Functioning Test" set up with a Speech-Language Pathologist to see if I am cognitively "normal" and I'm just psyching myself out or if there is some impairment there. But that's not happening until November 24th. We'll see!

With my new "no restrictions" status, I tried driving last weekend. It's scary. I'm not gonna lie. I totally understand how old people drive now, including their "no highways or night driving" rules. The other day I drove to the mall, we shopped and had lunch, and then I asked Matt to drive home. That tired me out enough that I needed a nap. One fun thing about my brain now is that when it gets overwhelmed, it tells me that it's a good idea to go to sleep, even when it's really not. Like the first time I drove, and 20 minutes into the 30 minute journey my brain said "Okay, I'm done. Let's close eyes now (or, close one and a half eyes, as the case may be.)."

Tonight I tried the ultimate challenge - driving in the dark, in the rain, to a place I hadn't been to before and had to follow directions while driving. I got a few miles in before flipping out and going back home. And I only lasted that long because for some time I was too scared to turn out of the lane to get to a parking lot in which to turn around. So, came home and cried about failing, and made plans to practice more night driving starting tomorrow. The worst part was having to call the person I was supposed to meet and tell her 1) I'm running late, and 2) I'm too scared and can't make it there anyway. The reason I was running late is because I spent a long time researching the route that did not involve highways/the beltway. Hey, at least I tried, right?
I'm thinking I might need an eye patch for the left eye while driving, at least at night. I see double of the lights, which may be due to eye drops, the rain, or just my eyes. I'm nervous about the effects on my peripheral vision, but I can turn my head if I need to. I can't unsee the double things.

Speaking of eye stuff, I also discovered something amazing this week - Refresh Celluvisc. This drop has saved me. It's a super-thick gel-like drop, so I can't see clearly out of that eye when I use it, BUT I only have to put it in every 2-4 hours, instead of every 15 minutes. And no more burning! Celluvisc plus the punctal plug have made the last week about a million times better than the week before. My eye might not get clawed out afterall.

Also cool, when I scratch in my left ear, if the room is quiet, I can hear it! I have no idea if this is "phantom hearing" or some sort of bone conduction or real hearing, but it's exciting to think that there could be a possibility, some years down the road, that I might hear out of that ear again! It would be pretty freaking amazing if my hearing AND face recovered, with the size of my tumor. Someone would have to do a case-study on me or something.

Since I didn't get to list it out for the doctor, here is my list of bothers currently:
-Facial paralysis, sub-bothers of this being: dry eye, numbness/tingling that sometimes hurts and sometimes feels like I'm covered in bugs, food falling out of the corner of my mouth, biting my lips by accident while eating, needing a straw to drink, and sillier things like not being able to blow a proper raspberry on my baby's belly
-Hearing loss - can't hear more than one thing at a time, can't locate things, crazy tinnitus ("white noise"), etc
-Left sided weakness
-Headaches
-Scalp pain
-Big ugly scar (okay, so that's a little trivial but I am a girl..)
-Balance issues
-Fatigue
-Emotional issues
-Forgetfulness / questionable cognitive difficulties
-Swallowing liquids when I don't use a straw. I feel like I'm choking.

I told Matt that I've lost my "Mommy Skills", like passing out snacks while walking through a crowded mall or while driving. I did, however, bathe the kids myself this week for the first time since surgery.

In PT we're working on my stamina along with balance and ability to walk and do something else at the same time. The goal is to get me back to working 12 hour shifts without my brain giving up halfway through and telling me to go to sleep. I've also been working the Wii-Fit every day. I'm pretty good at the boxing, but pretty bad at the balancing.

I'm going to get a new hairdo Saturday, so maybe that'll improve my self esteem / general mood a bit, because frankly it's been pretty bad lately.