Wednesday, February 11, 2009

Five-Month Status Report

February 10 (yesterday) marked five months since brain surgery, and today (Wednesday) is 22 weeks. Whichever anniversary makes the most sense to you, the bottom line is that there is much to celebrate: brain surgery five months ago, almost-completely regular life today. Things are well along in the recovery, especially when looking at it from the perspective of distance. Overall, things are great.

As to specifics:
Incision. The incision itself remains the main external, visible manifestation of this adventure, and even it is almost completely healed. There are still two places on the bottom horizontal line that are raised and inflamed, but otherwise, for most of the length of the opening, it’s a task even to figure out where the scar is. (Remember that I turn out to have the perfect hair for brain surgery, which complicates the location task.) My skull has some ridges where the bone was taken out and replaced, though I haven’t acquired the large dents that some craniotomy patients get. On the other hand, some of them report getting the dents months after surgery, so perhaps the more precise report is that I don’t have dents so far.

Scalp. A portion of the scalp that was folded back is still “boggy” (surgeon’s words). As I experience it, it’s more that it’s both numb and hypersensitive at the same time. The size of the area affected hasn’t reduced much in the last month, though the sensitivity has declined.

Headaches. These are no longer a regular feature of my daily life. Sometimes, a headache will creep along when I’ve overdone things, but they’ve become nearly rare.

Arm/Shoulder. My right shoulder continues to be not quite right. In the forward and sideways planes, I have full control and it works as I’d like most of the time, except when fatigued, when it starts to balk. My arm has limited backwards movement and the shoulder has strange hitches. Occupational therapy continues. Right now, it’s approved through February, and it’s hard to predict how much progress we’ll make in that time. The progress is steady and there’s the prospect of further improvement. The last week has seen a consolidation of previous gains and our hopes are high.

Numbness in fingers and toes. All the initial symptoms of numbness in extremities are gone. My fingers and toes are completely with us all the time. Certain manipulations of my shoulder can cause tingling in both fingers and toes, the latter of which I always find bizarre.

Cognitive gaps. These persist, though at a lower level than earlier. It’s hard to figure out what are brain tumor/surgery effects and what are aging effects. I clearly have memory problems, both short and longer-term. These correlate with my energy level, so at least some of them are leftovers of surgery and the energy my brain is putting into re-occupying the tumor void and related healing. As I’ve described, my ability to read fluently comes and goes, as do other higher-level functions, like synthesizing, summarizing, analysis, etc. This is truly vexing. On the other hand, I don’t seem to have the “freezes” in coming to decisions that characterized some of the early weeks after surgery, so again, there’s improvement and reason to be hopeful for more.

Balance and vertigo. My balance has improved remarkably. I still get vertigo, even when I sleep, which is a very odd sensation. This, too, is unpredictable and vexing.

Energy levels. This is the most problematic area for me, primarily because it is so unpredictable, which makes it hard to adapt or to plan. I can usually summon up the energy to pull off whatever needs to be done, and then the question is how big the price will be in terms of recovery time. However, there are times when energy just ends. Yesterday, for example, I had a series of productive meetings and then went to work out. Afterward, I thought I’d just rest my eyes for a few minutes. Almost two hours later, I woke up, and the afternoon was gone. That’s frustrating. Sure, I could work in the evening to catch up, but I’d hoped actually to do something productive in terms of writing and that didn’t happen.

Other miscellaneous symptoms. These come and go, too. The hormone surges seem to be receding, thank goodness. The last time we talked to the surgeon about those, his response was essentially “oh, that’s really interesting. Maybe it’s from brain trauma or stress.” The other neurosurgeon we saw early on was fascinated by the effects and wished for the ability to do a battery of tests to measure it all. We just hang in there and wait for it to go away.

Support and friendship. All through this, the support coming our way has been sustaining. We feel loved and cared for. People have been amazingly generous and the good will in helping to bridge the gaps, pick up the dropped pieces, cover, adapt, laugh at the funny parts and hold our hands through the rest has been overwhelming. We are very, very grateful.

Summary. I’m a lucky person. Lucky that the tumor was benign, lucky that it was accessible, lucky that the precision “stealth” surgery was possible and that our area has a skilled neurosurgeon. I’m lucky to be alive. I’m lucky still to be able to function at a relatively high level most of the time. I’m also an impatient and frustrated person, still really struggling to gain patience and grace. If the patience would arrive right now, I’d be content.


1 comment:

  1. It's hard being patient all the time. And dealing with some of the things that are either ongoing or just crop up is frustrating.

    But really, congratulations! You have come a long way! I know that's hard to see sometimes when you want everything back to 'how it used to be'. Right now, and not next week or next month.

    I sometimes go back and look at my pre-surgery MRI scans to help remind myself that my brain's been squished for years (decades I think, actually), and that it needs time to recover.

    Hang in there! I hope things continue to look up for you!