What to Expect When You're Expecting Brain Surgery

I was recently doing what I do, perusing the internet looking for things to get worked up about (good or bad) when I came across a new post on a brain cancer forum I follow on Facebook. So I did what I also always do, respond with whatever I believe in the moment to be the best reply… whether I’m right or wrong.

Just kidding, I’m always right. To borrow a joke from my stepfather, I once thought I was wrong, but I was mistaken.

So now, if I may ACTUALLY be serious, I really do try to be as informed and based in facts as I can, especially here on this Substack. I am also very careful to denote that much of what I express here is based on my own experience so it may not be universal… though I know enough to know that it’s all pretty dang common.

So back to what I wanted to write about. The original Facebook post included the following:

My resection is scheduled for August 1. Resection is from midline cerebellum and part of 4th ventricle. Obviously nervous, but also ready to get it past me. Anyone have any pointers as to some things I might expect that maybe were a surprise to you?

For those wondering, a resection is a surgery where surgeons attempt to remove as much of a tumor as possible. Location can be a significant factor as certain parts of the brain are just too delicate or we don’t fully understand how they impact things like mobility, breathing, heart activity, etc. This type of surgery is different than a biopsy… which usually precedes a resection and many assume does not count as surgery. But it does. Its technical name is “surgical biopsy”. See? It’s right there in the name.

A biopsy is much less involved and exposes someone to far fewer risks generally, but it still involves much of the same “noggin crackin’ and such” as a resection. One is more like reconnaissance while the other is more like excavation. Still, neither is a walk in the park.

In my case, my biopsy was MORE THAN THREE TIMES the duration than my resection (ten hours versus three), I nearly died, and developed a brain infection so yeah, I definitely consider biopsy a surgery. My actual resection? Pretty simple and routine. Ya know… for brain surgery.

But to get back to the point of this post, again, the cerebellum isn’t the most common location for brain tumor surgery, but it does happen. That’s actually the location of my tumor. Mine is a little off to the rear from there (near the brain stem) but it’s still fairly similar. Naturally, I responded to the post in a way that I hoped would be helpful and didn’t sugarcoat anything without being overly scary either. Come on, it’s brain surgery.

For one, any tumor in such a location is likely to not be fully resectable because it’s a fairly delicate spot in the brain. Maybe it could happen depending on the specifics of this person’s situation?

That will get figured out more clearly come surgery time. But, to get to the point of what I wanted to write about (again), what follows is a basic overview of all the stuff patients don’t really get told in advance of a brain surgery. Or maybe it is and just not stressed too heavily, because most of us are more focused on the “you’re gonna do what to my brain?” part.

First, let’s talk about biopsies. Most biopsies are similar in nature so I’m not gonna spend much time on them. Even needle biopsies (which pose even fewer risks and can go into some more delicate areas more easily) still involve making a hole in the skull and digging around for tissue samples.

Both are basically an updated form of the ancient medical practice of trepanation. I’m not writing that to be glib. There might be more safety precautions and scientific research behind one now but they are still incredibly similar.

Trepanation is the art of drilling a hole in the head, either at your own hand or with the help of a medical professional.

Things get more complicated… and thus generally riskier… with resections… the procedure most consider actual brain surgery… and they come in two varieties: unconscious and awake.

Awake craniotomies are a trip (craniotomy=general term for surgery within the skull). Because you know… you’re partially concious while people poke around your brain. Most people hold pretty basic conversations while medical folks poke around said person’s brain. One of the techs present for my friend Byron King’s awake craniotomy was coincidentally someone he went to high school with so they caught up on old times. Umm… while a surgeon did things to his brain. Sometimes patients do other things too like play violin and recite poetry. For real. There’s plenty of videos online showing stuff like this.

But my friend and one of my primary patient advocacy mentors, Liz Salmi, took it to a whole new level. She wrote a paper. Not during the surgery, but after. And it was for the New England Journal of Medicine. It’s sometimes known as THE MOTHERFUCKING NEW ENGLAND JOURNAL OF MEDICINE. NBD. It basically details what it’s like to undergo an awake craniotomy. You can read it here.

I’m not looking to get published in any fancy-pants medical journals like her, but I’d be lying if I stated that I wasn’t jealous. I mean, I wouldn’t mind getting that sort of honor, but I’m more interested in doing my own version of that sort of accomplishment. Say, like a rock opera. Hey… it counts!

The rock opera is currently undergoing a title change but it’s gonna be a fundraiser for two different very legit cancer charities closely associated with The Who and already includes participation from 30+ people living with cancer and about the same number of normies too..

And, once again, back to the point of this post. I’ve really been meandering in these posts lately.

Anyway, the vast majority of folks are unconscious and not “awake” during a craniotomy. My intention here is to explain what that’s like in hopes of helping some people understand the process and know what to prepare for and what to expect (and thus the title of the post).

note: please excuse my use of the word “you” in this. I’m writing this for someone about to actually go through this stuff. If that’s not your situation, just pretend so YOU can better understand what I’d like.

Such surgeries usually take place first thing in the morning so you’ll probably spend the night prior in the hospital so you can be monitored and properly fasted. But then I have heard of some folks being told to show up pretty early on surgery day so I could be wrong about it being the prevailing standard, but I do think staying at home the night before isn’t all that common.

Right before getting knocked out, someone from the medical facility will ask you a bunch of questions to confirm basic data so no big mistakes are made… like operating on the wrong brain or something. Just kidding. Most hospitals know humans only have one brain.

I’ve actually never seen this movie in spite of making the above cringey joke. Maybe it’s time that I watched it. I do love me some Steve Martin.

While you’re unconscious, a section of hair will be shaved from your skull so the surgical team can access the goods inside and a catheter is inserted into you know where and then some other stuff happens like your head getting busted open and such.

After that’s all over, you wake up in some sort of hospital room before getting transferred to a more permanent spot. In my case, I was in intensive care for a couple days with all sorts of tubes, electrodes, and machines. Not as many as I would’ve thought, but still a lot.

Once in NICU, I felt like I like was constantly falling off to the left despite being in a very level hospital bed. And my coordination was noticeably bad. That likely was related to my specific tumor location (in the balance center of my brain), but it does seem like odd sensations/issues are fairly common in the days right after surgery. These do mostly fade in intensity, but it’s certainly possible to deal with a lesser version of whatever impacts you then in an ongoing basis. For instance, I no longer feel like I’m falling off to the side, but I do have some left side weakness and tend to drift that way when walking if I’m not actively mindful of it.

I eventually went to a “regular” hospital room and the feeling of falling off to the side was largely gone but I still had some other issues to confront. I was very sensitive to light so I kept my eyes shut most of the time. Because of this, I wasn’t really able to watch TV or read. That’s certainly no guarantee it’ll happen to everyone else, but it is a possibility, at least short term. I mean, your brain just got busted open. That’s a bit more substantial than a paper cut.

I spent most of my time listening to TV shows and movies I had seen a bunch in the past. I was able to visualize what I couldn’t see and “hanging out” with something familiar was comforting. There were no surprises in an otherwise unexpected time where everything seems like unchartered territory even though realistically, you’re just laying in a bed.

And just so you know, I listened on my phone or a tablet. I could keep them near to me so I could better control the volume with placement under a pillow or blanket. Also because I wasn’t really opening my eyes much, it was easier to see than a tv across the room… and there was certainly more control over what to “watch”.

Yes, this got very boring, very quickly. I was extremely appreciative of every visitor even if I was likely not the most active conversationalist. Visitors like my parents mostly watched me sleep. I also kept weird hours because of all the rest. Sleeping 18 hours a day is not uncommon. Plus things tend to be darker and quieter at night so it can be easier to be somewhat awake. I’d pass most nights listening to music.

I opted for mellow, but upbeat. Nothing too raucous due to my sensitivities, but nothing that would have me falling asleep. Obviously it’d be different for everyone, but I found The Alabama Shakes to be near perfect for this purpose regardless of the song.

The boredom and isolation heightened my desire to get the fuck out of Dodge. In turn, this heightened my paranoia as to why I was not getting visited by my wife and children as much as I would’ve liked. I mean, there were definitely complications with that so I don’t hold any resentment now that it’s all over. The big thing was namely my family being in a completely different geographic state (Tennessee vs Georgia) than I was. It’s a long story as to why and fairly unique to my own situation. Just know that being in the hospital plays tricks on your mind so be ready for that should you require a stay.

Things were exacerbated in my case as I had to stay an extra day in the hospital because the person at the insurance company responsible for electronically checking a box on a standard release form was out of the office. So I was essentially held hostage at the hospital..

No, really. in case you didn’t know, the American Healthcare system… private insurance in particular… has some definite flaws.

I may be overstating things a bit, but not really extravagantly. It’s all because liability issues. Maybe it’d be the same with universal insurance, but let me have my anger here over this. Please. I need this.

When I finally did get permission from the insurance company to be released from the hospital, I didn’t get to go home. Like many patients, I was released to an In-Patient facility where I had to relearn things like walking, going to the bathroom without assistance, how to get in and out of a car, walking stairs, etc. It’s like being in an older run-down hospital but with less glamorous rooms and worse food. At least that was the case for me. Maybe there are some high end in patient facilities out there, but I wouldn’t know.

My days (for several weeks) consisted of constant vital checking (temperature, blood pressure, etc) and occupational/physical therapy for most of 9am to 5pm. Because of my tumor location (in the vestibular region which is known to “wake” slowly in the morning) I eventually had my daily sessions pushed back until 10 am. That was a relief of sorts because mostly I just wanted to rest and do nothing.

Also I was on a steroid known as Dexamethasone. Most everyone who gets brain surgery gets it. It’s associated with lots of fun side effects, the most pronounced being extreme moodiness. So yeah, I was an asshole to pretty much everyone which made me fairly unpopular. And so will you.

One of the other side effects of Dexamethasone is an excess of energy. It’s kind of like taking speed except that you get fat instead of rail thin. And you still don’t feel all that physically strong or able so you are jacked-up like you drank a 2-liter bottle of Mountain Dew and not really able to do much with it.

Coincidentally, “Talledega Nights” was a frequent listen for me as were “The Office (US)” and “Parks and Rec”.

After finally getting home, I got to deal with yet another side effect of Dexamethasone… a large amount of weight gain. I went from about 155 to 195. And all in my face and belly.

And don’t think that the weight just burns off after you’re off the drug. It took me about a year. And oh yeah, a great many people have trouble getting fully off of Dexamethasone. As you taper off of it, you start experiencing withdrawal symptoms like nausea, diarrhea, fatigue, headaches, and general ickiness. And the lower in dosage one goes, it gets oddly more extreme. It actually took me several months to get off of it with the help of an endocrinologist.

Now, some people don’t have much problem getting off The Dex, but that was not my case nor the case of many folks I know. Either way, be ready for the possibility should you need to get your noggin split.

One cool thing is that you get a pretty cool voice for a few days after surgery from having breathing tubes down it.

In case you are wondering, that is not what my voice normally sounds like. Also I don’t really have any issues with Bob Marley other than maybe hearing “Three Little Birds” way too many times in this lifetime, but remember when I said brain surgery does things to you? Yeah, whatever I said made more sense to me at the time… though I still hardcore believe everyone should get some form of healthcare just for being a human.

But even the cool voice thing has a down side. Because of irritation to my throat from having all those tubes, I had hiccups every 10-20 seconds for several weeks.

There’s probably more, but that’s a good start for now. Feel to comment with any surprises you may have experienced after brain surgery or leave a question!