In which I discover that healing from brain surgery does not progress in a linear fashion.
12/1
Recovering from this is nothing at all like recovering from other kinds of surgery. Hoo-wee! Things get better, then a little worse, then kind of better, then something else changes. . .
I still have an accumulation of cerebrospinal fluid in my neck, but apparently I slept on my back long enough to mash it back up to my skull. There is definitely a difference in the healing between my scalp over the bone and my scalp over the plastic. The fluid is over the plastic part, and it’s like there’s a water balloon under my skin.
Words come and go sometimes. I’ll read a word and have no trouble comprehending, but when there’s a good sentence to use it in, I won’t be able to pull it back up.
Last night for some reason I was thinking of the TV show “Community.” I was trying to remember the names of the cast members, which should have been easy since I’ve seen every episode and the opening credits are very visual. For those who haven’t seen it, it’s a folded paper cootie catcher/fortune teller with the actors’ names and little pictures in plain blue crayon-like font revealed as the paper unfolds. I could visualize only one name, and while I could replay the sequence in my head, all the blue crayon was disjointed lines and scratches instead of letters and pictures. Even after finding other ways to remember the cast, this visual didn’t change at all.
12/1
I still am finding that my innate mnemonics (which are pretty much all visual) are working as I form new ones, it’s just that some of the ones that worked before surgery seem to be a little less dependable.
Not all the time, either. It seems that once I’ve managed to mentally reconstruct the visual image, it comes back to mind the next time pretty easily. It’s not quite like starting from scratch, but I’m very aware that a memory that existed is broken or partly gone.
The words I’m a little more patient with. A lot of the blanks that come when I’m writing can be filled in with a Google search, and I haven’t been doing much talking since I’m not terribly comfortable with driving and getting out yet, and so tired I don’t like being on the phone. (Tried it with my Mom, and it wore me out because I kept losing track of the conversation.)
The strange thing though is that it really highlights that the language areas of the brain that understand and the language areas that produce can work so independently of each other even though you’d think they have to cooperate. They communicate, but one can be broken and the other fine and you still have a piece of your language function. I don’t know a better way to describe it. . .
It’s frustrating, but paying attention to it and trying to figure it out keeps me focused on the progress. Being able to see what has changed and when reminds me that it’s not all just frustration.
12/17
Again, I’m finding that the recovery process is hugely frustrating. The name forgetting is a problem with real people as well – after spending an hour chatting with one of my fellow band mom friends, the next day I completely blanked on her older daughter’s name – a name I had known for many years and had been using in conversation less than 24 hours beforehand. Once I had consciously made the effort to re-establish the association between the person and the name, it was right back as if it had never been forgotten.
I’m having some discomfort being out in public with sensory overload. I’m not sure how much of this derives from the long confinement to home and the onslaught of shiny, sparkly decorations and inescapable christmas carols and how much of is is because I’m still having occasional problems visually processing movement. That part is better enough that I feel safe driving, but things look different in a way that I don’t think I can accurately describe. Obviously, edges of things are more distinct and my peripheral vision is back, but there’s something else I can’t quite put my finger on.
In other news, I decided I just couldn’t wait until April to get a new glasses prescription. With the pressure off the back of my eyeballs, my glasses just weren’t working. Before I knew what was wrong, I was sent to a specialist because my eye pressure was very high – now it’s well within normal in both eyes, and no longer a concern. Plus, the astigmatism in my left eye (the one that was most badly mushed) has disappeared. And, because the prescription change was caused by a medical condition, my insurance actually paid for the exam and the glasses. BOOYAH!
Lexapro is beginning to take a slight edge off the depression, but it’s only week three. I still can’t wait until I can get back onto Adderall, because my days are just a haze, but that has to wait a bit.
12/29
New change that I noticed, and this I think is directly related to the pressure on the occipital lobe.
First, yesterday was a day of sleep. I was so exhausted that I went back to bed after breakfast (which was at 10:30, already at least three hours later than usual) and slept until 2:30-something. I was stunned when I looked at the clock. But with incoming winter weather, my head is achey and swollen anyway, and the cerebrospinal fluid balloon under my scalp is enormous.
Hubby and I decided to go to a mall and go walking to get out of the house and get some exercise. It was good for me, but a bit much, as I was losing my balance towards the end.
However, the two significant things I noticed were, first, that my eyes were steady, and second, that I was not as sensitive to LED lights on the highway.
Prior to surgery, when I was overtired, my eyes would actually physically roll around. I would get cross-eyed and dizzy if I didn’t make a concerted effort to keep them in the same direction. So I’m guessing my occipital lobe is feeling much less stressed.
I also had a great deal of trouble with night driving before surgery because I perceived the flicker in the LED taillights of cars. Not so bad with most foreign cars, but really, really awful with Cadillac Escalades. Taillights on those looked like marquee chaser lights to me. Unfortunately, nobody seemed to be driving one of those last night, so I don’t have that as a comparison, but none of the other LED taillights (or the brandy-new LED road signs) were as annoying as before. Again, this is related to visual perception, housed in my recently un-smushed occiptal lobe.
There are a lot of things I’d prefer to see vast improvements in, but I’ll take what I get!
1/10
I just wanted to add an update regarding the memory issues, because I’ve put my finger on what’s happening in a little more concrete way.
My memory has always relied on triggers. If I forget something, I can usually work around with associations, usually visual, and eventually pull up what I want. I know that the thing I’m looking for is kind of tickling around the edges, just hidden from view. I might not be able to pull it up right away, but I know it’s in there somewhere.
I know I mentioned this blanking before with names, but I had a very specific illustrative experience this morning that I wanted to share.
For some reason, I have no idea why, I was thinking of that guy who was in charge of Iraq. You know, the one the US put in charge and who was supposed to have weapons of mass destruction and tortured people and set Kuwait on fire and had a magnificent palace and was found hiding in an underground hole called a spider hole and whose disheveled mug shot was all over the place and who made that long crazy rant before he was hanged and whose two sons were also killed. . .you know, that guy?
I could recreate the series of events in my head. I could see every single picture, recall all the videos, even re-hear certain news snippets, but no matter what, his NAME was nowhere to be found. This is not some obscure, forgettable person. This is recent and historically significant.
And this name was not hidden, tickling around the edges of my memory, playing a game of hide-and-seek with me. His name was not missing, it was gone as if it had never been there. All my knowledge and memory of him was perfectly intact, except for his NAME.
I was about to google it, but my daughter was home, and (obviously) immediately supplied me with “Saddam Hussein.” At that moment, I experienced what I can describe only as a rush, because it was like a WHOOSH as all those sounds and visuals that had been empty of that name had the blanks filled in. Even the names of the sons that had been blanks were back where they’d been missing before.
This is different from forgetting. And it’s limited to names for people and things. I’m not blanking on verbs, adjectives, adverbs, only nouns, and primarily names and proper nouns.
It’s consistent with damage to the syntactic processing areas of my brain that were compressed by the tumor, but it’s interesting that the deficits are appearing as I recover moreso than they existed while the pressure was on. It’s also interesting that when these “blanks” are filled in, it’s like the memory gaps are filled “en masse.”
If it weren’t so generalized, I would wonder if there’s a correlation between which memories are compromised and the time at which the tumor began to affect my verbal processing. I guess I’ll never know. I’m going to have to go do a little more research on how the brain goes about naming things and maybe I’ll figure a few more things out.
1/23
Again with the ups and downs!
Two days ago, I could not stay awake. I had breakfast, went back to bed, woke up briefly in the afternoon, and then slept until 5PM. I never, ever sleep like that.
Yesterday, the stuttering and word loss was back again, along with a mild vertigo and loss of balance. And while the collection of cerebrospinal fluid under my scalp has gone down some, my neck was stiff with it. There’s one little crater at the base of my skull behind the top vertebra, and from that you can see how much fluid has accumulated.
However, each time these particular symptoms recur, they’re slightly less severe than they were the time before.
A few days before this, I decided to try a different route to a store that’s a bit out of the way, but worth the trip. I made one wrong turn, but instead of being completely disoriented and frustrated as I was back in August, I remembered essentially where I was and figured out where my wrong turn would take me, and got where I was going.
It was the first time I’d tried going an unfamiliar route since that August trip, and the improvement in my spatial orientation ability was vast. Yay!
Yesterday, however, I had a number of moments of standing someplace in the house and forgetting which way I was going. Still not as bad as before.
I have a feeling that today will be another day in bed sleeping. When the fatigue hits, it’s really intense. I don’t like sleeping the day away, but the brain is calling the shots here.