I returned home (again) ten days after translab in Seattle.
I had my long-awaited translab resection on Tuesday 13 August 2024.
The path since has been a bit more eventful than expected, but I think the way forward is pretty clear. Some highlights:
Very difficult to come out of anesthesia, with nausea and vomiting. I'm pretty sure some of the folks around suggested that next time I have general anesthesia, I should have a "full work-up". Colonoscopy coming up soon, so I will keep that in mind!
Seemed to have blurred or double vision most of Wednesday. Still anesthesia-related, I think.
Awoke more fully on Thursday and made quick progress. Sent home noonish Friday. Hurrah!
Noticed some clear discharge from the incision near bedtime Friday evening. The decisions of the next 12 hours or so on my part don't necessarily make a lot of sense, but my wife did most of the talking on the phone, and keeping everyone calm and adequately supported during a difficult time had its own challenges. Regardless of how or why, I spent roughly 11pm-2am at a nearby, relatively sparsely equipped ER, then decided it was all much ado about nothing and went home.
Saturday morning, the neurosurgeon, having been notified about my ER visit, called and made it clear that he recommended that I come back downtown so he could look at me personally. He determined that I had a CSF leak and should be re-admitted for the insertion of a lumbar drain. I spent roughly 10 hours in Emergency before a room opened on the neuro floor around midnight. In the meantime, the magnitude of the leak had increased greatly; drainage was soaking a thick dressing about every hour or so.
Sunday morning's lumbar procedure was not so smooth. The trouble is that not every provider is born with the same level of expertise, and I think that sometimes the only way to learn how to do something properly is to be given the opportunity to attempt it, which necessarily brings a risk of failure. Which is a bit of a philosophical framing of the fact that the Fellow studying with my neurosurgeon tried a couple of times to insert the drain, but unsuccessfully. And honestly, it was quite uncomfortable from my perspective. Yikes. Gladly, my experienced neurosurgeon arrived an hour or two later and instilled confidence in me that he would be able to insert the drain. It still hurt a bit, but he clearly moved with a purpose and talked through the process, and I remained calm nearly the whole time. Once the drain was in, the leak dried up almost instantaneously.
Starting Sunday afternoon, we had roughly 72 hours of hourly draining, with continued monitoring of the incision (and, I suppose, anything else that might be impacted by a CSF leak, like my nose) to ensure that everything stayed dry. Which it did. The drain was clamped for the last time Thursday afternoon and, when nothing untoward developed, removed on Friday morning in preparation for discharge noonish Friday.
On Friday morning, now 10 days after the procedure, I developed a lack of responsiveness on the AN side of my face. Fairly suddenly, I couldn't smile or close my eye reliably on that side. I saw this as a bit disappointing, but not particularly alarming. Having seen during the prior week that the surgeon had left a sliver of tumor on the facial nerve (because it was quite entwined, and we prioritized maintaining facial nerve function over full tumor removal), I wasn't shocked that it might cause problems, or that there might be a delay in the onset of those problems.
The staff in charge of clearing me for discharge, however, had quite a different response. From their perspective, I was on the neurology floor, and I suddenly had new symptoms of facial unresponsiveness! So it was that just before noon, about a dozen people descended upon my room, checking all my vitals and sending me off for another CT scan. Quite the hubbub! Well, it turns out that I wasn't having a stroke, and I was headed for home in time for dinner.
Given the second admission and lumbar drain, I think it was fortunate that I was scheduled to have my stitches removed from my cranial incision 16 days (rather than a more customary 10-14 days) after the procedure. That appointment was almost entirely uneventful.
As I write now, that was 3.5 weeks ago, and as of yesterday I can report that my face is essentially back to full, symmetrical appearance. I returned to work a week ago--probably a bit more quickly than most in a similar situation, but my workplace is my basement, and I think that the commute and/or dealing with people all day (particularly if, say, one's face doesn't really work as usual) are the typical barriers to returning to work. My balance is mostly very good; I still walk a bit like I am on a boat sometimes, but PT is helping. The biggest concern that I have now is that my second incision--abdominal--is still healing, and looks pretty ugly in the process.
Abdominal incision? Yes, the particular way that my surgeon went about my translabyrinthine approach involved plugging the hole that he drilled in my dura with a piece of fat taken from my abdomen. I suppose it is a bit of an open question whether that really worked, since I later developed a CSF leak behind the incision. But since everything seems to be fine now, I'm not going to spend a lot of time thinking about that.
I think that the most difficult parts of the whole process have come from just being in the hospital and thus away from the house for roughly ten days, and/or the difficulty that the rest of the family had with logistics. Should they get a hotel room near the hospital or drive an hour each way daily from the house? Our son and his bride of 2.5 years stayed with my wife for most of two weeks, which was wonderful and probably necessary, but also rather stressful. Readjusting from all of that, together with the fact that I was on steroids and perhaps a bit more volatile than usual, has not been as seamless as one might imagine.
I should be getting an MRI in November, and there may be some radiation for that bit of tumor that remains. We shall see. But it is cool to look at the before and after MRIs side-by-side, and to note that the big, white ball in the before picture is almost completely gone in the after.
