Frequently asked questions about your craniotomy

frequently asked questions about your craniotomy

If you’re reading this page, chances are you’ve recently heard that you need to have a craniotomy. Try not to worry. Although, yes, this is brain surgery, you’re more likely to die from the underlying condition itself, such as a malignant tumour or subdural hematoma. Think of it this way: insomuch as being alive is safe, which it is not, having a craniotomy is safe. We fill our days with doing laundry, replacing our brake pads at the auto shop, or making a teeth-cleaning appointment with the dentist, in the expectation that everything will be fine. But it won’t. There will be a day that kills you or someone you love. Such a perspective is actually quite comforting. Taken in that light, a craniotomy can be a relaxing experience, rather than one of abject terror.

 

WHAT HAPPENS DURING A CRANIOTOMY?

 

Nearly all operations begin with the creation of a bone flap so the doctor has an opening into your brain. This opening will be sealed shut at the end with wire or titanium plates and screws. Beneath the bone are the three meninges, connective membranes also known as the mothers: the dura mater (hard mother), arachnoid mater (spidery mother), and pia mater (soft mother). After we’re past that triple embrace — like the Moirai crones of myth that spin, measure, and cut the thread of life — we’re at the precious substance of thought. The blush of living brain has been described as resembling the inside of a conch shell or a crumbling marble quarry. To me, it’s like the revelation of brine and meat after shucking an oyster. Beyond that, what happens during a craniotomy depends on the type of surgery. A translabyrinthine craniotomy, for example, involves cutting away the whole of the mastoid bone and some of the tunnels of your inner ear.

 

IS IT TRUE I WILL HAVE TO BE AWAKE DURING MY CRANIOTOMY?

 

Some craniotomies require you to be conscious. When a tumour makes itself comfortable with a good book and a blanket in front of the fire of your eloquent cortex, which controls language or motor functions, we give you prompts indistinguishable from online banking security questions. Certain surgeons fancy themselves as early explorers, sketching out crude cartographies of the thunderous Badlands, the twists of the Amazon, the jagged coasts of Jutland brainscapes. I like to think of the organ as an ancient manor or primordial motel and myself a plumber, electrician, or stonemason reading a blueprint of where to find the stairways, hidden chambers, fuse boxes, boiler, septic tank. It’s a Versailles of the id and ego with a fleshy, well manicured hedge maze.

 

WON’T I BE IN PAIN IF I’M AWAKE DURING MY CRANIOTOMY?

 

You will be awake for a short interval during the craniotomy. Also, there are no pain receptors in the brain. What you might undergo are moments of aphasia or synesthesia, like Kandinsky hearing his paint box hiss or Schubert visualizing E minor as “a maiden robed in white with a rose-red bow on her chest” when he heard chords struck in that key. The hallucinations aren’t as enchanting. You think you have it bad enough getting brain surgery, then suddenly the OR is covered in roaches. A woman once met her long-lost twin. She didn’t have a long-lost twin. There was also the estate lawyer who decided that his entire surgical team was trying to kill him and wouldn’t stop screaming, “You’ll never make me talk!” Reports of out-of-body experiences aren’t uncommon. I’ve heard it feels as though you are watching your own handwriting uncoiling from someone else’s pen.

 

WHAT WILL MY BRAIN BE LIKE AFTER MY CRANIOTOMY?

 

It will go on with its braining, provided we got all the cancer or your growth was benign. If you have a tumour that has seeded itself throughout your cerebrum like an aspen grove, however, or been diagnosed with a glioblastoma multiforme, you will have a different kind of recovery. 

 

In such circumstances, your craniotomy will be followed by radiation. We might even implant some wafers in your head and light you up like a plug-in bust of Christ. Patients tend to squeeze out at most another year after this; vigorous or younger individuals can last a smidge longer. What occurs next is this: fatigue, mood swings, muscle weakness, confusion as to the purpose of a toaster. Family and friends drop by to tell you that you’re an “inspiration” or to utter phrases about “the indomitable human spirit.” There’s the wearing of wristbands and ribbons and the guilt donation of a dollar to the Leukemia & Lymphoma Society or other cancer research organizations at the grocery store or pharmacy. Positive social media updates about your progress or how the tumour “may have killed a couple of brain cells but can’t kill your sense of humor” will proliferate. Chemo makes you lose weight.

 

Steroids make you gain weight. You spend hours on internet medical forums, lament the hours spent on internet medical forums, then spend more hours on internet medical forums. You vow to quit the internet altogether and immediately spend more hours on internet medical forums.

 

Later: constant nausea isn’t relieved by medication because it’s caused by cranial swelling. Thrush invades your esophageal tract like you’re a neglected fourth-grade science project. Incontinence, memory loss, the inability to wield utensils. Epiphanic moments and inexplicably beautiful solitary hours are devoured by rage. The joy of sunlight, the decency in rain; the hatred of sunlight, the disgust at rain. Your long-suffering, Florence Nightingale spouse grows distant. Neighbours avoid your house in fear they will have to engage in small talk with you or your family. There’s discussion of Kübler-Ross’s Stages of Grief and where you might be — when in doubt, choose “Bargaining.” Manically, you sort through storage boxes in your attic or basement and, also manically, sort through memories. Diets, tonics, acupuncture sessions, and other alternative holistic methods are tried. You ingest so much flaxseed, but flaxseed can’t cure everything.

 

Much later: Pain pills are increased to straight-up morphine to, finally, liquid morphine that’s absorbed inside the cheek because you’re too tired to sit up or even swallow. Hospice workers visit who seem like they’ve been sent straight from the choirs of seraphim; hospice workers visit who you want to punch in the face because they talk about “wanting to give back” or “observing the whole range of the human condition.” Your spouse or mother or child caretaker is overwhelmed by a crying jag at the sight of a newly delivered commode chair. Your spouse or mother or child caretaker gives you a haircut and you feel fully afraid and not just numbly afraid as you watch your thin hair on the floor get swept away. Your spouse or mother or child caretaker, if artistically inclined, draws your likeness while you nap. This likeness won’t be completed and is left, parchment edges curling, with only one wide turtle eye. Plan on being brought outside for a last trip to see the migration of geese. A dry fever calms you and shuts down all your bodily systems. You breathe harder and harder until you stop.

 

A few families have even claimed that reckoning with a fatal diagnosis strengthened their bond. I’m here to tell you that dealing with the brain and its illnesses is comparatively simple. It merely requires a good mechanic. What’s trickier to work with is the mind. There are symptoms that cannot necessarily be mitigated with hospice care or a prescription, such as when your spouse informs you that, even though you are a brain surgeon, he is too depressed to leave the house and pick up the boys at school or walk the dog. Perhaps you’re not as understanding as you should be, seeing as marriage to a female brain surgeon is like winning the devotion of a unicorn. Instead of him telling you that he won’t be able to attend the parent-teacher conference, you should be telling him that you won’t be able to attend the parent-teacher conference. You should not be the one to clean up golden retriever feces off the kitchen floor.

 

WHAT ARE THE COMPLICATIONS THAT CAN OCCUR FROM A CRANIOTOMY?

 

Ability to understand language but not to speak. Ability to speak but not understand language. You might become the relative who throws the turkey at holiday dinners. At least it’s not as bad as trephination. Doctors in the Dark Ages used to create burr holes to relieve pressure or remove mental illness, meaning you’d have a permanent open wound in your head, but when they were done, they let patients keep the round piece of bone. Men and women wore the bone around their necks as a charm to ward off evil spirits. I bet it also came in useful for scaring the hell out of one’s nephews.

 

The worst complication I know of is when an ENT stuck a probe up a patient’s nose and punctured the blood-brain barrier because it was unusually low. Each time the patient took a breath, oxygen siphoned into his cranium and couldn’t escape until he herniated his brain into the vertebral canal. There lurk beastlier medical boogeymen, such as super-gonorrhea or the strain of MRSA resistant to known antibiotics. Eventually, you may not be able to get a rhinoplasty for fear of dying from a staph infection.

 

If that was blunt, that is because I have been dulled. Today, I had an emergency surgery on a senator for an arteriovenous malformation (a congenital tangle of blood vessels— a Gordian knot of gray matter) who could shut us down based on his demands for Medicare cuts, then got dragged to the emergency room for a thoracic burst fracture, and meanwhile I’m buzzed nonstop with requests for consults. I’m also forced to fetch my own fresh frozen plasma. On top of it all, I drew the short straw to write this FAQ page for our website because, our director said, we want it to have that personal touch. Now that I am single, I’m also the sole guardian at home (or not at home) responsible for getting a couple of adolescent boys who are both flunking math to stop watching porn or playing video games and do their homework. My apologies if my bedside manner comes across more Groucho Marx than Mother Teresa.

 

WHY SHOULD I CHOOSE ST. TERESA OF ÁVILA HOSPITAL FOR MY CRANIOTOMY?

 

The Department of Neurological Surgery at St. Teresa’s has been recognized for decades as one of the foremost specialty centers that focuses on the brain and spinal cord. Surgeons from all over the globe come to learn about the latest minimally invasive— and the latest maximally invasive — techniques. It’s deliberate that Saint Teresa of Ávila happens to be the patron saint for headache sufferers. Tales from hagiographies describe her mystical trances wherein she would feel herself be stabbed through the heart and out her intestines with the fiery golden lance of God, causing excruciating spiritual torment. Hospital halls are built for suffering. Teresa’s mantra was, “Lord, let me suffer or let me die.”

 

CAN YOU TELL ME ABOUT YOUR SURGICAL TEAM?

 

Though I wouldn’t necessarily call us a team, I did fill in as pitcher so the hospital could participate in league softball playoffs. Dr. Jay Katz couldn’t make it because he had a Whipple. Jay is a terror both on and off the mound. He can remove half a patient’s pancreas without having to pee. I’d have to rig myself up with a catheter. Dr. Amy Benson is our go-to skull-base surgeon. She recently returned from maternity leave. Now the only thing we hear about is the coltish softness of fontanels, the magical myelination moment of development when her baby recognized — I mean really recognized — her face. Maybe I’m just jealous she has a child who recognizes her face. Dr. Chen, our primary pediatric specialist, decided to retrain from dermatology after his son died of an astrocytoma. I’m very sorry Dr. Chen’s son died of an astrocytoma, and I’m sorry that we’re compared to the example of heartbroken-but-nonetheless-resilient goodness set by Dr. Chen. Then there is Dr. Steve Stevens, who has a decent name for a nemesis; he is the director of neurosurgical operating rooms at St. Teresa of Ávila and once left a sponge behind in a patient’s brain. Do not permit a man with essentially the same first and last name to operate on your spine, his forte, the most lucrative specialization in our field.

 

As for me, I have a totaled Lexus, the academically indifferent sons, an acute condition of plantar fasciitis, a touch of alcoholism, and the no- longer- toilet- trained golden retriever. But you don’t really want to know this, do you? It’s like when you were a kid and you ran into your teacher parting the mist on some veggies in the grocery store and it dawned on you, “Wow, Mr. Wilson must have to move through linear time.”

 

YOU’RE KIND OF ANGRY, AND THAT’S NOT VERY PROFESSIONAL. IS EVERYTHING OKAY?

 

I feel betrayed by the brain. The brain is more or less the same in everyone; there is the Broca’s area, that cul-de-sac of speech in the arcuate fasciculus, and there is the hippocampus, that seahorse of memory, nestled in the temporal lobe. But when you think of the color red, do you picture the insistent primal red of an emergency vehicle or the deep burgundy of an aged wine? If I asked you to visualize a chair, would you picture an ornately carved dining chair or a plush recliner? Similarly, I thought my husband was predictable; I knew which entrée he would order at restaurants, which jokes would elicit a laugh. Then I found my husband in the garage after his suicide by gunshot to the head, and our relationship no longer made sense. I assumed I had known the locations and boundaries of things, where he tended to take off his shoes, the weekend afternoons he liked to be left alone. The older brother he used to idolize had overdosed. My husband was sad, and after a while I became exasperated with him, because I assumed that I understood where the edges of that sadness were. Now I wonder: when I am resecting a brain to prevent seizures, for example, what am I even attempting to fix?

 

HAVE YOU EVER THOUGHT ABOUT NOT BEING A NEUROSURGEON?

 

It’s absurd that I apprenticed and studied for my entire youth to help others live longer so that they can continue to melt the Polar ice caps while enjoying party subs. Still, I am rather fond of my rongeurs, my retractors. After a while, everything becomes routine. My favorite part is when we’re offered up sheep corpses to test prototype drill bits.

 

Unless you’re Saint Teresa and have taken holy orders, you feel the despair of the clinician, particularly when working with children. Suturing peach fuzz or reopening a bone flap to drain the cerebrospinal sap of a girl with brain swelling leaves a bittersweet existential aftertaste. I sobbed in a supply closet, the first real, gulping sob since I was an intern, after I accidentally nicked the sinus of a toddler with epilepsy and saw the blood drenching my scrubs down to my shoe covers. “I’m trapped,” I remember muttering, and not merely because I was huddling in a locked supply closet. There’s a dissociation from yourself, similar to what patients report feeling upon that first tug of anesthesia. When I was removing a pituitary recently, I had the thought, what if I abandoned my sons and simply worked at the food court in an airport?

 

HOW ARE YOU GOING TO MOVE ON WITH YOUR LIFE?

 

After I took out that pituitary, I found myself driving to the mall. Both of my sons had after-school vandalism and weren’t going to be home until late. Escalators that were past the point of caring about anything, a feeling I identified with, stitched me up several floors in a department store until I arrived in the blissful sauna of fabrics that was the section for evening gowns. An emerald-green dress covered in sequins with a plunging neckline was the first to flash to my brittle attention, and I looped it over an arm raw from surgical soap. In the changing room, as I was determining, “My boobs probably cannot handle this,” a female voice, perfectly pitched in helpfulness, had to inquire, “How are you doing in there?” When I opened the door, she fluttered into an excited clap and said, “It looks so great on you! Really brings out the color of your eyes.” I told her my eyes are brown. “Of course,” she recovered immediately, “but I can see ocher, almost amber flecks in them when you’re wearing that dress.” Did I want her to gather up some others that I might like better? She resembled my mother, who had raised me by herself and been so proud of my reliable profession and my reliable husband, who had worked odd jobs to support us — she had been a waitress and a secretary and a stockist of blue jeans — but forty years younger, reincarnated and karmically forced to work retail for eternity. Though maybe that was my dumb imagination too sentimental from bereavement.

 

The twenty-something reincarnation of my mother brought me a strapless golden dress of stiff satin that curved like a bell but with a slice cut out of it at the front, as if my legs were the clapper on display. “Absolutely not,” I said. She brought me a dress that was layers of frothy raspberry tulle. “I’m the human embodiment of a smoothie.” She brought me a duchesse-silk bustier dress that was hand- beaded with pearls and lacy corsages that looked like crumpled baby fists. “They don’t look like the hands of ghost babies to you?” She brought me a classic black sheath dress with a slinky train that shimmered royal neon blue, so it felt as though I were nearly constantly tripping on an electric eel. “Is this for a special occasion?” she asked. Such information might give her a clearer idea of the best ensemble for my needs. “It’s for the Medulloblastoma Ball,” I replied. “Is that a new start-up?” A variety of brain tumour, I explained. There was no Medulloblastoma Ball; I had invented it on the spot, and the fake event conjured pictures of globular brain tumours in formal wear awkwardly holding each other at the waists during a slow dance in a junior high gymnasium.

 

“I hope you don’t personally know anyone affected,” my retail mom said, with that concerned-from-a-mountaintop look surgeons use when they’re giving bad news but they don’t want to hug. “My husband died from a medulloblastoma,” I lied, and she came down the mountain in what appeared to be genuine sympathy. She must have realized she was going to have to hug. “My intuition homed in on a sad aura around you,” she whispered into my hair while hugging me. “I am sad,” I agreed and became preoccupied with the thought that she might spot errant gristle nestled in my bun. Despite the most herculean of hygienic efforts, it’s funny where you’ll find tissue— your hair, the corner of your lips, in your bra. “When did you last make the space for self-care?” she pressed on. “I can’t mourn my dead husband with pedicures or spa treatments,” I protested. No, no, that’s not what she meant, but she could let me in on her secret if I was interested. Her secret, she continued without waiting to find out if I was interested, was to take one ordinary action — pouring a glass of water, or peeling an orange — and slow it down, slow it way down until it becomes almost unbearably beautiful, then recite to herself, “I am alive.” It’s a trick of your nervous system that speeds along the process of allowing psychic wounds to heal. In response I said something like, “I guess I am going to buy the sparkly green dress that brings out all the not- green in my eyes for the totally legitimate brain cancer dance.”

 

DID YOU TAKE THE ADVICE OF THE DEPARTMENT STORE REINCARNATION OF YOUR MOTHER?

 

I wore that emerald gown out of the store, and I was wearing it when I bought a case of cheap sauvignon blanc, setting the alcohol on top of my balled-up scrubs in the passenger seat, and when I got home, I wore the emerald gown as I uncorked a bottle and slowly, ever so slowly, poured the liquid into a glass and took a sip. Conclusion: I felt the same amount of boring PTSD. Operating in the emerald gown would be so glamorous, I mused, provided I had matching hairnet and face mask accessories also studded with emeralds. Wouldn’t it be fun to cut into a brain, adorn it with gems, and then cover that diadem back up with the patient’s skull? A surgeon could remove a tumour but replace it with a sapphire or ruby. The emerald gown and I let the golden retriever out to take a shit in the middle of the driveway, then the golden retriever, the gown, and I lay in bed, where I drank the rest of the opened wine. Since my husband killed himself, the golden retriever sleeps on his side while the dog bed on the floor remains empty and disgusting. That dog bed has probably been disgusting for a while, but only now that the dog no longer uses it do I find the dog bed beyond repulsive.

 

My sons returned and yelled for me. “I’m in the bedroom,” I yelled back at them, and they located me in the bedroom. “What do you think of my new dress?” I asked. They were standing extremely still, too still for teenage boys, which meant they were either afraid that they would be told to do something or afraid of something I would do. “I hate it,” the elder son unambiguously passed judgment. “Yeah, it’s ugly,” the younger confirmed. “You’re right. It is hideous,” I said, rolling the depleted wine bottle against my leg and listening to the sequins ting. “What should we do with it?” “Run over it with the lawn mower,” Elder proposed. “Throw it in the pool!” exclaimed Younger. “To the pool!” I decreed, stripping off the dress, at which they made gagging sounds and averted their gazes, then I slowly, ever so slowly, just to mess with them, donned a robe also slept on by the dog. That time I did feel an increase in tranquility, so my retail mother’s advice did work. “Goodbye, you worthless overpriced knockoff dress I spent money on for no reason!” I shrieked as I hurled the dress into the pool. The dress pirouetted elegantly in the jets like a jellyfish or a severed mermaid tail. Water was the proper medium for dresses, I decided. Celebrities at the Met Gala should promenade down the red carpet and into an enormous fish tank. “Toss whatever you want into the pool,” I told my sons. Were there exceptions, rules, items that if lost to the depths would later make me mad? “Do your worst,” I said, then added, “as long as it won’t electrocute us.”

 

WHAT ELSE DID YOUR FAMILY THROW IN THE POOL?

 

A nine-iron, a leftover jar of marinara sauce, medical textbooks, my son’s calculus textbook, which I remembered he is failing, my other son’s history textbook, which he also is probably failing, my dead husband’s button-down shirts, a couple of pork chops. Our filter buckets are often clogged with snakes, frogs, and tiny lizards — a chlorinated witch’s cauldron — so a pork chop, I reckoned, with its plush padding of fat, could make a welcome life raft for some desperate gecko. In went a hammer, a basketball, and a single leather glove, as though we had challenged the pool to a duel. A Nativity set was sacrificed, and drowned, too, were childhood action figures, those superheroes and supersoldiers, intriguing me as to what they might bring as gifts to round out the frankincense and myrrh. Additional flotation devices for the geckos in the form of couch cushions were hurled, and under them I made a note to check for untold quarter, booger, and, most important, benzodiazepine treasures. The gross dog bed was chucked, so for good measure I pushed in the dog. We laughed at him as he paddled around the obstacle course of our crap in that terribly inconvenienced yet gentlemanly manner of swimming dogs. When the boys carried out the framed photo of the four of us from the foyer with their father’s arms around each of them, I said, “Okay, stop now, that’s enough.”

 

IS THERE A PIECE OF HOPE YOU CAN IMPART TO READERS OF THESE FREQUENTLY ASKED QUESTIONS, SOMETHING YOU’VE LEARNED FROM STARING DOWN THE NAKED OCCIPITAL LOBE OR LOSING A PATIENT TO A RANDOM BASILAR ANEURYSM OR HEARING THE NURSES AND RESIDENTS CHANGE SHIFTS FOR THE NIGHT, THE VARIOUS RHYTHMS OF THE HOSPITAL, OR THE SUICIDE OF YOUR HUSBAND, OR TRYING TO REACH YOUR SONS BY RUINING YOUR BELONGINGS IN THE POOL?

 

Read these answers once again, but very slowly. Recite to yourself, “I am alive.”

ABOUT THE CONTRIBUTOR

Mary South is the author of the short story collection, You Will Never Be Forgotten, with FSG Originals. She is a graduate of Northwestern University and the MFA program in fiction at Columbia University. For many years, she has worked as an editor at the literary journal NOON. She is also a former intern in The New Yorker's fiction department and a Bread Loaf work-study fellow. Her writing has appeared in The Believer, BOMB, The Collagist, Conjunctions, Electric Literature, NOON, and Words Without Borders, and on NewYorker.com. The writer Maile Meloy awarded her story 'Not Setsuko' an honourable mention in the Zoetrope: All Story fiction contest. She lives in New York City.

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