Location, Location, Location

When it comes to brains, as with real estate, it is all about location. That is one of my motivations for starting this blog: One’s experience of meningioma and craniotomy will differ widely depending on where the tumor is located, so firsthand accounts help sketch out the range of possibilities.

To illustrate just how different the experiences can be, consider this: 

·       I am one of five people I know who has been diagnosed with a meningioma. 

·       Three of the five of us have had to have the tumor removed. (“If it grows, it goes.”)

·       Only one of the five ever had any symptoms. 

·       That person went from diagnosis to surgery in four days. 

·       The other craniotomate went ten years between diagnosis and surgery. 

·       With the three craniotomates:

o   One had tremendous pain because it was on her spine and she needed physical therapy afterwards. My neurosurgeon said that the spine is the worst (read: most painful) place for a meningioma.

o   The other craniotomate, whose meningioma was in the right frontal lobe, reported being very tired after surgery but not experiencing any neurological issues from the operation other than a slightly increased sensitivity to background noise. 

o   My tumor was on the border of the left occipital and parietal lobes. Though I do tire easily, I’ve been more wired and only sleep about five hours a day—three fewer than before surgery—and I had visual/proprioceptive issues for about five days. 

So when you’re speculating about how your meningioma/craniotomy might go for you, you must consider location first and foremost. Your symptoms or post-surgical issues could range anywhere from nothing to personality changes, vision loss, balance issues, memory or speech problems, sensory oddities, and so on. (You can find information on the brain lobes and their functions in this article or basic video.) Remember that meningiomas grow out of the meninges, so the more interior parts of your brain are unlikely to be affected unless the tumor is so huge that it’s compacting other areas.

Anytime you poke around in the brain, even if you don’t go in deeply, there will be some brain swelling. To figure out how the surgery and the brain swelling are affecting you, the nurses will give you neurological tests every 2-4 hours for about forty-eight hours. 

To make those long winter hours fly by, perform these tests on your loved ones and see how their results compare to mine:

Memory: 1.     What’s your name? 2.     Where are you? 3.     Why are you here? (meant in the literal, not existential, sense) 4.     What is the date?	My results: 1.     😊 2.     😊 (When I was tired, I just gave the name of the hospital. When I was perky, I’d add “ICU” or my room number.) 3.     😊 (I was awarded extra style points for upgrading my answer from “brain surgery” to “craniotomy for meningioma.”) 4.     😐(Need a judge’s ruling on this one. While the content of my answer was correct, I said it in a linguistically incorrect form: “Eleven first.” However, though I lost points for not being able to say “November,” I should get secret points for knowing at the time that my students would shake their heads and say, “Oh, Teacher! That’s not right.”
Muscle movement/strength: 1.     Raise and lower legs against nurse’s hands 2.     “Push the gas” and pull back on toes 3.     Squeeze the nurse’s fingers and push/pull against her hands	My results: 1.     😊 (I have a hazy memory of doing this too vigorously at one point and flashing all-and-sundry with my catheterized nethers. Not sure if I lose or gain style points for that.) 2.     😊 (Reminds me of Pilates class.) 3.     😊
Tactile sensation: ·       Nurse rubs cheeks, either simultaneously or one at a time. Some also do arms or calves. Does it feel the same on both sides?	My results: 😊 (I find this a surprisingly tender gesture and start to feel affection toward the nurse. You get secret points if you can avoid giggling like the Pillsbury Doughboy.)
Facial muscle skills: 1.     Smile! 2.     Stick out your tongue. 3.     Puff out your cheeks and hold them while the nurse pushes gently on them. 4.     Raise your eyebrows.	My results: 1.     😊 (Yay! I’m happy!) 2.     😊 (Now I’m confused by the rapid plummet in our relationship.) 3.     😊 4.     😊-😐. (I think I can do this, but with a fresh scalp wound it hurts.)
Visual: 1.     Nurse holds fingers in front of your face and tells you to say when you see her fingers moving. A. Right side B. Left side 2.     Nurse holds hand at side of face and asks how many fingers she’s holding up. A. Right side B. Left side	My results: 1.     A. ☹ (I don’t understand; she’s not moving her fingers at all.) B. 😊 (Oh! I see now—she’s wiggling the fingers of her other hand at the side of my head to test peripheral vision.) 2.     A. 😒(I don’t like this game.) B. 😊 (The left side always was my favorite.)
Proprioception/coordination: 1.     Close your eyes and hold your arms up and out in front of you like a tray. 2.     Keeping your eyes closed, touch your finger to your nose. A. Left side B. Right side	My results: 1.     😊 2.     A. 😊 B. 😨AAAAACK! Where did my hand go?! It just disappeared off the radar and then hit my cheek! Who took my hand?!
Bonus Round: Memory under Heavy Sedation vs. Making Shit Up to Fulfill Social Interaction Nurse in ICU: “Is that a lamb?” Nurse: “Cute! Who gave you that?”	My response: Me: “It’s a llama.” (Points awarded for basic animal identification, though I initially thought it was a lamb, too.) Me: (Hazy memory of Brian opening the gift bag and--) “My aunt and uncle.” (--saying that it was from--) “They live in Marshfield, Wisconsin.” (--his parents and brother. Oops. The nurse has left and I passed on erroneous information to her! I must remember to correct the record when she returns…. Wait. She does not care about my llama’s origins. But I should rehearse my answer in case someone else asks. For the next hour: “It’s from my in-laws. It’s from my in-laws….”)

There were other issues on my right side. When my husband and I took strolls around the hospital, he had to walk on my right side because I kept banging into gurneys and doorways. And that’s a bit painful when your arm still has three IV shunts in it. When we got home, Brian would occasionally hear a bump followed by cursing as I ran into walls and doorways on my right side. It took a while for my right hand to feel like it was totally integrated. I mean, I knew I was moving it and it responded to my commands, but it just seemed to surprise me at times. My fine motor skills were not great, either – and I apologize to anyone to whom I tried to send a message from my phone the next day, as you probably received a very short but mistake-laden message that took me about five minutes to write. Fresh craniotomates should not be given access to their cell phones.

Additionally, my reading vision was blurry for a few days. I’m near-sighted, so I was immediately aware of the problem. When I closed my eyes for a couple days after surgery, I would see crystalline, kaleidoscopic shapes moving on the right side. One day, as I watched those shapes, they turned into little people. That stopped the next day.

So take my experience with a ton of salt; your results will vary. When you change the location, you change the world.