Id Seeks Ego

Simone Maslow. Clinical neuroscientist. Soon-to-be medical student.

[simonemaslow]

Dude, where’s my white matter?

The patient is a 49 year-old left-handed-woman with no prior medical history until she presented at the neurosurgery clinic complaining of headaches.

This is the sentence with which I begin my case report about a woman I’ll call Marie, a clinical tale not without intrigue, mystery, and betrayal. (Okay, the last part may be a bit dramatic, but when working with strong personalities in the neurosurgery department at a large academic institution, tensions can run high and burgeoning egos become obstacles).

For now, the patient and her husband sit across the table from me in a windowless exam room. My boss, a neuroscientist, who I’ll call Freud since he is unwavering on his assertion that Freud set back psychology 100 years, has taken me through the case before they arrived. On his laptop we read through charts, clinical and post-op notes. We download her MRI and CT scans, poring over them trying to find what the neuroradiologist found. Even with my minimal training (I’ve only begun reading MRI neurological scans a year and a half ago), I can see there’s something terribly wrong with this brain. The white matter flashes bright and sinewy and is flecked with miniature holes like shrapnel. A large, fluid-filled cyst rests in the pons making it hard for our patient to keep her balance when walking. I can see the pink, glossy scars arcing over the shaved patch at the back of her head from her surgery two weeks ago.

The patient is here for a neuropsychological evaluation which I will administer in a series of cognitive tests that assess her attention, language, memory, spatial reasoning, and higher problem solving ability. It took six months for the doctors to figure out that Marie had leukoencephalopathy with vanishing white matter (LVWM), a rare disease of the white matter of the brain.

LVWM is also associated with cognitive decline, which is why we are assessing Marie today. As clinical neuroscientists, it is our job to bridge brain and behavior, to form inferences and help diagnose by assessing both a patient’s neurological structure and function. To do that, I administer psychological tests and talk with the patients over the course of a half day or a day, depending on how many tests we decide to give. The first part of the exam is the clinical interview, where we get to know the patient.

“I don’t really want to be here,” Marie says quietly, staring at the table.

“Why not?” Freud asks.

“Because this isn’t me,” she answers. “This isn’t my normal brain. I mean, I was no rocket scientist, but I could at least sit down and read the paper. I knew how to drive a car. This is making me stupid and that’s not me.”

A pause. Marie used to be the manager at a casino before her disease forced her into early retirement.

“And I don’t want to be made fun of for it.”

We assure her that that’s not our intention, that we’re here to make her as comfortable as possible, that if she gets uncomfortable at any time…., that we’re professionals trained and used to dealing with people like her…..etc. etc.

She looks at us imploringly but not without a little hostility. When Freud leaves I remind her how useful this testing will be for her and her doctors and I am here to help.

The testing is a bit rocky at first; she is quick to give up but I don’t let her. With a little gentle prodding, we get through it. Then I say something that I will regret for a long time (It’s five months later and I still think about it.)

“This is hard!” Marie exclaims after I’ve asked her for the fifth time to recite a list of 16 words I’ve just read to her.

“I know,” I say. “But you’re doing fine. Just keep going.”

“I used to be so much better than this,” she says. She can only remember one or two words out of the sixteen, even though I’ve read her the list five times.

“It’s completely normal to feel discouraged when you’re doing this, or feel like you’re doing worse than you are,” I say. “Even smart people have trouble with this test.”

And there it is. I immediately try to backtrack.

“I mean, I’ve tested some people with really high IQs and even they have trouble with some of the tests.”  

And I just made it worse. I can’t remember what I said after that. I probably tried to ignore it and made her tell me all the words she could remember again from that list or given her a much harder test to try to distract her. And I’m not sure if she forgot my comment, didn’t register it or chose to forgive me for it as a bumbling young person overeager to do her job because we parted warmly after the exam.

I still agonize over this comment. I had done exactly what she had asked us not to do. It was so careless and thoughtless and I scold myself for not keeping my mouth shut.

When I got back to the office, my boss approached me, eager to have me write up her case because it’s so rare and no one has ever done a neuropsychological profile of a LVWM patient before. This is an easy publication and a great opportunity for me to be a first author on a paper. I work for three weeks on the case report, reading everything that was ever published on the disease until I can recite symptoms and MRI findings with ease. The paper is now written and ready for publication but today we received a disturbing email from a neurosurgery resident not previously involved with this case. He was cordial enough until he wrote that he was going to do a write up of Marie’s case and wondered if we could be so kind as to give him our file of Marie’s complete neuropsychological tests.

Like hell, we would. (My boss’s response to that email was an emphatic “fuck you” to his computer screen). As for me, the resident will have to come over here and pry that file out of my cold, bony hand if he wants it (unless Dr. DeMerrit, the head of the neurosurgery department, tells us to give it to him, and because he’s the boss of everyone in neurosurgery, I have to do what he says). We email him our case report. (“Can you just hear dreams being crushed?” Freud asks me.) We are now waiting to hear back from the reviewers.

 This case reminds me of the two sides of medicine. I am on one side, the medical side. As a clinical neuroscientist and soon-to-be med student (I start in July) I can sit on one side of the round exam table, with my uninjured, healthy, well-developed brain and fire questions at those who are not so lucky. Whenever they complain about the tests or ask me aggressively if I’ve even taken any of them, I can think to myself, “I don’t need to; I’m not the one with the subdural hematoma.” On this side, we can make fun of the obnoxious patients, spend a little time feeling sorry for them only to take our healthy brains home and forget about them after a while, or think about them in a non-emotional way, like Remember that one guy who had that really cool tumor that made him unable to tell right from left? Or That schizophrenic lady threw his pen at me today, how hilarious. This is a side I’m getting more and more comfortable on (if not a bit of a hypochondriac and buzzkill at parties as I will often remind people how excessive drinking causes cerebral atrophy).

On the other side of medicine is the woman asking not to be mocked for her disease making her forgetful, or the woman sitting beside her husband of 60 years as he receives a diagnosis of Alzheimer’s, or the patients who get frustrated with me because the neuropsychological tests make it impossible to hide their weaknesses and they are forced to confront what they have vehemently been denying for months.

I wish I could say that I am capable of using my healthy brain to forget about these patients but the truth is, many of them stay with me and I sometimes wonder what happened to them (our office only occasionally does follow-ups). Maybe it’s because one of the reasons I got into medicine was to become better acquainted with the human condition, with which I am simultaneously fascinated and terrified. I suppose as my medical training progresses I will have more answers (and learn not to call people with neurological disorders stupid). I’m looking forward to the coming day when I can offer more than a listening ear and words of support: “You’re doing fine. Keep going.”