Mom pointed out I should probably post about how the whole craniotomy/brain tumor recovery process is going, and she’s totally correct.
The craniotomy was on May first, 2015. I returned to work at the beginning of July, starting with four hours a day, then increasing to five hours a day the next week, six the week after, etc., until I was full time starting in August. It was tiring at first, and I’m glad to have started out with a limited schedule and eased back in to regular hours.
At that point, I still had occasional stabbing head pains and an ongoing headache, but the head pains were infrequent enough to be more irritating than debilitating, and the headache was manageable with ibuprofen and tylenol rather than oxycodone. Generally, if I took four 200mg ibuprofens every 6-8 hours and three tylenols in between those times, that would do the trick.
From July – September, with great physical therapy to detach the scar tissue from my skull (which was apparently causing most of the head pain), I was able to gradually ratchet back on the ibuprofen and tylenol until I didn’t need it anymore. Yay! I sort of hate taking pills, so that was great.
So, now it’s January. On average, I might have a stabbing head pain once a month or so, and a regular headache about once a week. Nothing major. The left side of my head and temple area still has numbness, although I can feel some spots even in the numb areas. Physical therapy stretching allowed me to finally get my jaw open enough to eat a hamburger by the end of September, and now it’s nearly back to normal. Occasionally, I’ll get a little swelling and tenderness in the left temple and cheekbone area – it happens randomly, usually in the mornings, and isn’t enough puffiness for most people to notice. It generally settles down during the day. I keep my hair parted on the right now (it used to be a left part), so it covers up that area. My hair is growing back in very nicely, but there are a few left over little bald patches from the scars, many in areas that would be evident with a left-side or middle part, so parting on the right also makes those invisible.
Dr. Ferreira said my eyesight would improve as much as it’s going to improve in the 6-12 months after surgery. At the one-month post-surgery exam, he said there’d been solid improvement already. I got new glasses with a big prism in the left eye lens shortly thereafter, which was great. I haven’t noticed a huge difference since then, but future eye exams will be able to identify any changes – it’s not always easy to tell in everyday life, since eyesight changes are pretty gradual.
Almost every night and sometimes during the day, my temple all around the front part of the incision area feels itchy and tender. I like to imagine that maybe some of the nerves are turning back on, but it’s been going on for a while, now, so maybe it’s just a weird new norm.
Another crazy thing is that some of my head and side-face nerves seem to have slightly re-routed themselves. For instance, when I have an itch on some parts of the left side of my face near the cheek, scratching it sometimes results in an odd poking feeling on various parts of the side of my head. Also, I’ve had a Sonicare toothbrush for many years, but now when I use it on the left-hand side of my mouth, it shoots freaky vibratey feelings all along my temple area. It doesn’t hurt – it’s just super-strange.
Also, my left cheekbone appears to be permanently more pronounced than the right one, and my temple area on the left is dented in further. Again, the only thing that makes it noticeable is that I’m used to my face and can tell the difference compared with how it used to look. No one else would notice it.
My cardio still isn’t where it was – it’s amazing how much a few months of recovery time will take the oomph out of your energy level. That’s pretty much my fault, though. Exercise hasn’t been my first priority since returning to work, so it’s just going to take more effort.
Another thing is that I was pretty unhappy for a few months from July to September or thereabouts. It wasn’t work-related… everyone was great, the work was engaging and appropriate, and I was pleased to be back. I guess it was just finally having the time to think through things. Before the surgery, I was too busy with research and planning to really ponder the implications of the whole situation. Afterward, Oxycodone was both a necessary painkiller and kept me in a pleasantly cloudy frame of mind. Once everything had settled down, though, and I was pain-free enough to switch over to ibuprofen and tylenol, I became unusually sad for a bit. Not surprising. It’s largely passed, though.
In terms of brain stuff – I’ve noticed a tougher time recalling words than before the surgery, but not enough to be more than a mild bother. Also, “connecting the dots” between disparate-but-related ideas takes longer – as far as I can tell, this also seems to be a memory recall issue, because if someone says something that previously might have reminded me of another related thing, that doesn’t always happen now. For instance, if someone says they’re going to take vacation on a certain Friday, before the surgery I might have recalled that last week they mentioned a friend would be in town that weekend. Now my mental filing system is less likely to pull up that tidbit and offer it for consideration. If after mentioning their Friday vacation, they comment on their friend being in town in relation to that vacation day, I’ll remember our previous discussion about the friend and connect the dots easily. It’s just that it often won’t pop into my head until they mention it. The “friend” and “vacation” conversations are more likely to remain in separate buckets than before, which may or may not be a timing issue – it’s possible that given enough time to focus attention on the vacation day conversation, I’d make the connection independently – but that’s not especially helpful in quick conversation or busy, complex environments like work where time to focus is often in short supply.
I also feel a bit more emotionally immature – responding with irrational crankiness to some things that don’t really deserve the attention; or being more critical about things that should inspire empathy. My fight or flight instincts seem to surface more easily. Scrounging up the maturity to ratchet back those silly teenager feelings and respond appropriately to aggravating circumstances is something you gain over the years as you roam through adulthood and gain experience in real life. Eventually, emotional maturity just becomes automatic: a part of who you are (except where technology is concerned – computers have always inspired me to rage-filled profanity at the least provocation). Philosophically, I don’t approve of drama queens who inject unnecessary turmoil into everyday life – the best response to genuine upsets is to take a few steps back and think things through. I’ve lost a little ground, there – I’m back to having to remind myself to respond to life’s random aggravations like an adult rather than thoughtful, rational consideration being a built-in response that doesn’t require extra effort.
It’s hard to tell whether that’s just left-over emotional stuff from the whole experience or somehow related to the physical impact of the surgery… happily, brain plasticity research makes me feel encouraged that addressing it should really just be a matter of continuing to make the effort until my nerves get used to the behave-like-a-grownup pattern again.
Finally, a weird one. I now have to focus when walking down stairs. I can talk to people or look at things when walking up a flight of stairs without any problems. If I try to hold a conversation or look up at something else when walking down stairs, though, I’m incredibly likely to trip. Wearing heels makes this worse. I pretty much have to take stairs like an 80-year-old. Also, sometimes in the shower when I’m washing my hair with my eyes closed, if I move my head to the side while rinsing it, I become sort of dizzy. It’s like my inner ear can’t quite recall which side is up for a few seconds. So now I never multitask when navigating stairs and don’t tilt my head at side angles with my eyes closed while rinsing my hair (it doesn’t seem to be a problem at all when my eyes are open). The balance stuff is strange, but again, not hugely inconvenient.
That’s everything, as far as I can tell. None of it is major and none of it would be noticeable to other people most of the time. If this is how things are going forward and no more tumor surgeries arise, I’ll feel solidly lucky about the whole experience.