Post surgery, the rest of october. Progress is slow, but it’s still progress.

10/16
I’m just popping in here briefly to thank everyone for their support, and give an update. . .

I’m still in some pain, although it’s mostly incision pain and swelling, pretty much manageable with extra strength acetominophen. Very, very, very tired.

Some things changed dramatically immediately after surgery. In the recovery room, I opened my eyes, and my peripheral vision was back in all its stunning myopic glory! I also noticed physical sensation in my right hand and foot that had been lost so gradually I hadn’t been aware of how different it felt. The next 24 hours in ICU, I didn’t notice much except that morphine has absolutely no effect on pain in me – and yet the night nurse’s solution when I was in tears from the pain was to give me more of it. I was of sound enough mind to tell her “I’ll wait until you contact my doctor and get permission for dilaudid, OK?” Sheesh.

Once I was in a regular room, I tried to get up and around as much as possible. Since most of my time was spent sleeping, that didn’t amount to much, but it was wonderful to discover that my sense of equilibrium was back, and I was walking straight, no wobbling, no foot drop on the right, no odd visual perceptions of movement around me.

The next day, things were happening that indicated that my brain was relaxing into the newly vacant space. If you look at a horizontal cross-section of the sinuses, you will see that they look sort of like a Tim Burton-esque tree – a long straight trunk with equal pairs of curved branches coming out from either side. Mine were not quite straight like that, and on the second day, they started to snap back into their rightful places with audible clicks. (Audible to me, at least!) My tinnitus is back down to a more ignorable level, and the overwhelmingly loud single tone that was in my left ear only was gone.

The day after, I was awake enough to attempt reading, and I can do it again! Still need a larger type for the computer, though. My left eye isn’t working as well as my right, because it was under so much pressure that has now been removed, but I don’t have the ghost images in either that I did before surgery.

Word loss is still a problem, but I can see that it may be quite a bit more time before I can learn to compensate for that or overcome it, but I was able to converse in Spanish with the lovely lady who came in to clean my room every day, so I haven’t lost everything!

My doctor said that everything came out pretty neatly, some tissue attached to the tumor, but it hadn’t invaded the dura, and was completely encapsulated. We’re waiting for the pathology report, but the pathologist’s initial diagnosis of Roscoe was “meh.” (Literally. This was my doc quoting the pathologist!) The skull was too deformed to resect, so I now have a piece of custom plastic cement, and I could really carry off the bald look as a fashion if it weren’t for the giant incision taking away from the glorious shape of my naked head!

10/17
I had a problem yesterday with “auras” that were similar to the ones that precede migraines, but weren’t (thank heavens!) followed by migraines. I expect they’ll be a passing phenomenon caused by my visual processing neurons taking a little stretch.

Today was something of a downer, just exhausted and yet unable to sleep. However, I’ve noticed a few words – specific ones that were getting “lost” more frequently than others – are much easier to retrieve. There’s a somewhat disconcerting amount of fluid between my scalp and my new high-tech artificial skull, but I think that’s a fairly expected side effect.

Since I couldn’t sleep, I spent the day catching up on Season 3 of “The Walking Dead,” which is just about the perfect level of intellectual challenge for me right now. . .
Something else I just noticed is that suddenly, I’m not startling easily anymore. I was trying to think back to see if there were a correlation between my hypersensitivity and the medications I’ve been on and off, but it seemed to be a pretty consistent problem for at least a year now, and was still happening the week before surgery. I didn’t see that as a function of any of my flattened brain structures, but I’ll poke around and see if it might be a thing.

10/19
It’s not unusual to have some setback from any surgical procedure at about this point, but it still doesn’t make it bearable. Nothing’s gone wrong, but I’m just really tired and woozy.

Since I’m not medicated, my brain is too busy to let me sleep. Since you’re not allowed to take NSAIDS after brain surgery (did you know you’re not allowed to take NSAIDS after brain surgery? Now you do!) the arthritis in my shoulder is adding to the sleep difficulties. And what’s the thing you need most to recover from surgery? Sleep! Ain’t happening, folks, and that makes me mad. Which also makes it harder to sleep.

However. . .some words are coming back. I was really, really worried about the word loss being permanent, or taking years to recover, but I’m finding that when I’m mentally searching for a word, and I manage to find it, it comes back much more easily the next time I need it. The reason I can tell this is that I’ve had to remember a lot of very similar words for medications and procedures and such, and I’ve been observing that they pop into my head faster and sort themselves out faster each time I try to recall them.

And speaking of that, I never thought I would ever be grateful for the flood of words gushing in every time I try to express myself. One of the biggest frustrations in communication for me, for my entire life, was that I would stop in the middle of speaking because so many possible words and phrases would mob me that I couldn’t pick out the one I really wanted. This always bothered me, because in addition to prompting people to finish my sentences for me (causing MORE words to compete for my attention, and none of them being even remotely correct) it made me sound stupid. When I realized that my word loss had changed from too many words to silence, it was downright frightening. So I might not like the mental chatter, but it beats the alternative by a long shot.

In other news, we had to take one of the cats to the vet today, and the vet asked me about my surgery. (I knew she wanted me to take my scarf off so she could see, but didn’t want to ask, because we’d talked about it before!) She looked at my sutures and marveled at the skill of my surgeon. I can’t wait to tell my neurosurgeon that my vet admires his work. . .

10/20
Oh, I also forgot to mention, I’m experiencing less trouble with the calendar concept, as well. I should really start a tally to see if there’s a correlation between the time of onset of these symptoms and the time they diminish. Right now, though, I think I need to sleep. . .
10/21
Something else that’s really weird that I hadn’t even thought about. . .

I sleep with a box fan going, partly for white noise, and partly because my body temperature fluctuates wildly at night. It’s been kind of a joke that even though turning the fan off and on is a regular occurrence, I always, always, always turn the knob in the wrong direction before turning it in the right direction.

I just noticed that since getting home from surgery, I haven’t done that once. Is there a brain structure specifically related to doing this task?!?

10/24
Benificence. Obfuscatory. Execrable. Sisyphean. These and many other words have popped into my brain and gone right into my fingers over the last couple of days. No long blank stares at the monitor trying to figure out how to say what I wanted to say when the right words didn’t come.

This. Is. Amazing.

10/26
The cerebrospinal fluid that was making the back of my head look like a water balloon has mostly drained off. My neck is still puffy and sore, but now I have hope.

I am understanding the calendar again, not completely, but I’m able to count how many days between point a and point b, and usually get the concept of what’s happening next week, what’s in two weeks, and so on. I’m no longer confused by the idea that numbers are not in the columns or rows that I expected them to be.

Short term memory is almost back down to normal ADHD levels. When I walk into a room and forget why I was there, I don’t have to retrace all my steps for the past hour before I remember. I finished reading two books, and I’ve made dinner without messing anything up twice. (I’ve made dinner more often than that, but we’re talking about components that need multiple ingredients.)

10/28
We’re as prepared as we’re going to be for Sandy. I wasn’t able to help all that much in putting things away and securing them outdoors, but hubby and DD#2 managed to finish. Hubby is heading off to pick up DD#1 from school, which is ironically more dangerous than home even though it’s way more inland.

Sad to say, while the surgery has helped immensely with headaches in general, it hasn’t eliminated my “incoming weather” headaches. I’m torn between concern about the storm and my desire for it to get over here already so my head stops hurting!