It’s the third time the neurologist has said the list aloud, asking me to repeat the words back to him. I get three words right the first two times and on the third, I remember four of the five.
‘Wagon’ eludes me. It isn’t on the tip of my tongue. I am not close to spitting out the word. I feel as if I am blindfolded in the woods, grasping in all directions for some sense of where I am. I couldn’t even guess what letter that fifth word starts with.
I can feel my brain contracting, pulsing and squeezing like a muscle as I try to jump through the cognitive hoops the medical and psychological professionals present to me.
On the forth round, I hit “sandwich” and then pause. It’s a long pause. I somehow find ‘wagon.’ None of the visualization techniques or mnemonics I would normally use to remember things are working. Instead, I find wagon because I suddenly heard in my head the somewhat awkward way the doctor said the clunky word.
An awkward pronunciation was also how I remembered the word ‘spinach’ during the neuropsych exam I had an hour prior. The clinician said ‘spinnish.’ It bothered me into remembering the word.
I wonder if this will hurt the study results. Anyway.
Recently I went through the third stage (of three) of my second phase (of I don’t know how many, actually) of an NYU research study on patients who have suffered a “mild traumatic brain injury” as I did last August.
Step one was an MRI. Step two was a neuropsych exam by a PhD doing a post-doctoral fellowship. Step three was a clinical exam by a neurologist that looks a lot like a regular doctor visit but with tests of balance and a few memory and processing questions.
My participation in this study came soon after the concussion.
Full disclosure: they pay me $150 for each stage of the study – $75 when I complete the MRI, another $75 when I do the neuropsych and clinical exams.
Is it ironic that none of NYU Langone’s neurologists – literally not one – would see me because I got hurt at work and therefore my care was covered by Workers‘ Comp, but that they would be excited to study my brain and pay me for the privilege? It’s something. There’s an entire Concussion Center at NYU that apparently doesn’t treat anyone who happens to hit their heads at work–unless they’re able to pay out of pocket.
I got the sense that I was testing pretty well this time, or at least ‘normally,’ but I had no way of knowing. I don’t get to see MRI reports and am not given individual feedback, although I’m told the clinicians would alert me to any major problems.
From what I can tell, I function more or less fine. I still stumble over words at times, something that I find extremely embarrassing and frustrating. My attention span may be shorter and I may need more sleep than in the past. The middle-of-the-night feeling I used to get only when I slept less than six hours shows up more often now, even if I got eight hours. I procrastinate on tedious tasks, like calling to dispute a bill, but doesn’t everyone do that?
But during the recent research study session with the neurologist (who I can’t see as a private patient because I got hurt at work), when his tests were winding down it only took one question to make me break down in tears. He asked “are you getting follow-up care?”
I told him about the shady Workers’ Comp neurology hole I fell into immediately post injury. How I used ZocDoc to book an appointment with a male neurologist with an Indian name only to be seen in a rundown office by a Russian woman and put through an exhausting array of tests. I didn’t have the energy or the focus to try another neurologist. I couldn’t fathom how much an appointment with a “real” neurologist might cost out of pocket. So I stopped trying.
“We’re going to get you help,” he said before adding “I’m sorry it can’t be with me, but there are physiatrists in our concussion center that take Workers’ Comp.”
I cried some more–whether it was because of his kindness or fear that a neurologist thinks I’m not managing well or lingering concussion-related inappropriate emotions, who the hell knows.
In case you really like TMI posts like this, click here and here. My clumsy a$$ self has no shortage of embarrassing stuff.
Oh, Jen. You can’t share TMI on this. So sorry you’re going through troubles, still, because the system sucks so badly and did nothing to protect the injured you. I’m glad you have a kind doc there. Although my instincts — besides wanting to beam myself to NYC and give you a hug — is that he should just wave the fee, go pro bono, whatever the medical profession calls it, and see you himself. I hope his concussion practice physiastrist can offer you helpful care, Jen. Have a good rest of your day. It does seem as if you are back to normal to this uneducated eye and ear.