What It’s Like to Have a Brain Shunt

This isn’t going to be gross, I promise.

On this, the eve of the third anniversary of my second brain surgery, I am going to tell you about my shunt. 

I have a peritoneal shunt installed inside my brain. Here’s what it looks like: 

It’s a straw inside my brain ventricle with a long tube that goes down into my peritoneum. If I have any extra cerebrospinal fluid (that tastes like bananas, weirdly enough), it is siphoned off by the shunt and goes down the tube and empties into my abdomen. The first surgery I had, a little over three years ago, was completed after a week of heavy steroids and visits by my friends and family. Here’s a photo of that:

My memories of those days before my first surgery are actually pretty nice. I can’t deny that I enjoy being the object of attention, and nothing much gets peoples attention like the big C, and it was nice to hear from so many people and to know they were thinking about me. My girlfriend at the time was great, and extremely attentive and calming, pretty much the perfect person to have by your side when you’re going through the ringer of brain cancer. I’m sorry things didn’t work out in the long run, but she was amazing when I needed her. Here’s a photo of us together. I’m not using one of her face because that feels like a violation, somehow. I dunno. Her name is Kate and she’s great. 

It’s also hard to be in a bad mood when you’re on massive amounts of steroids. I never would have thought that steroids were necessarily mood-elevators, but I think they were in my case. Also, the nurses were truly lovely, and if I could remember their names or what floor or what department I would thank them personally. 

HUMOROUS ANECDOTE: For an unknown amount of time (months, maybe), I told people I had a “perineal” shunt. Your perineum is not your peritoneum. You probably knew that. I didn’t. 

You can touch my shunt. It’s my party trick, if there isn’t a Rubix cube around for me to solve. There’s not much of a trick to it, except some people get a kick out of pressing the squishy device just under my scalp. That it’s connected to a straw deep inside my brain makes it even cooler.

The shunt itself is bolted into place in my skull, and probably will remain there for the rest of my life. I asked my neurosurgeon about whether I’ll ever get it removed, and he said it was unlikely. Unless there’s a problem with it, they leave them in, even if you never need it again. Hopefully, I’ll never need it again. 

AN ADDITIONAL HUMOROUS ANECDOTE: There is no drug on earth better than the absence of pain that was previously unrelenting. I had spent months with intense headaches, and the first surgery I had eliminated them. The implantation of the shunt ended the squeeze of my overflowing ventricles. I was also taking pills for the pain of the surgery, so I was, for all intents and purposes, high as a kite. I had to stop at a Burger King to pee, and I stopped to look at myself in the mirror. What I saw made me laugh so much I took a photo. I have no explanation except that I thought a man with an obvious head wound wandering around in a Burger King, laughing, was hilarious and absurd.

Both surgeries I had were free of complications. Double vision plagues many brain surgery recipients. Not me. I had an easy tumor to remove, right on my brain stem. Yes, it was cancerous. Yes, it was malignant. It didn’t spread. I was lucky. It happened to be in a place that was easy to access. Not everybody is so lucky. The next time you’re tempted to say “at least it was benign,” remember that. Benign tumors in the wrong place are just as deadly as the other kind. There is no good cancer to get. It’s all bad. 

My memory isn’t great. I forget things sometimes, so I use my notebook more than ever. I have little headaches every day, but Advil takes care of them pretty handily. I get bouts of tinnitus more frequently than before, but it doesn’t last. I am extraordinarily lucky. 

There isn’t much slack in my shunt tube. When I stretch a certain way, I can feel the tube tighten against my skin. It’s visible when I turn my neck. Sometimes it itches and there’s nothing I can do about it except think about something else. 

That’s what cancer is, and that’s how you deal with it. You go from one day to the next, one scan to the next, until your story is over. 

I’m so very grateful that mine isn’t yet.