EMG And Nerve Biopsy: A Personal Experience



 Today's post comes via the Neuropathy Association (see link below) and is an excerpt from a book written by Ellen Schechter. The excerpt describes her experiences with EMG's and nerve biopsies; something I am sure many readers will be familiar with. I have attempted to get in contact with the author to get permission to reproduce this but so far have failed to get an answer. If anyone connected to Ellen Schechter  sees this and objects to its appearing here, of course I will remove it immediately. I hope that doesn't happen because it takes a light-hearted look at something that we all know can be extremely unpleasant.

Something Terrible: An Excerpt From "Fierce Joy
May 31, 2012

Editor’s Note: The Neuropathy Association is pleased to share with you this excerpt from acclaimed writer Ellen Schecter’s recently published memoir, “Fierce Joy.” An award-winning children’s book and television writer before her illness, Ellen chronicles her diagnosis with chronic inflammatory demyelinating polyneuropathy (or CIDP--an autoimmune form of neuropathy), tells how she found a way to be sick without suffering, and shares how she transformed the loss of her place in the world of work into a quest for her soul in "Fierce Joy."

After nearly two years of silently enduring these mysterious, increasingly severe symptoms, I both want--and fear--a diagnosis. No one--even Jim--knows anything about this strange pattern of pain, including my internist, whom I rarely see. In truth, I don’t want to know what this physical cacophony means, yet feel a growing need for someone to name and explain the strange and frightening sensations crawling over my body. When I finally describe it all to my doctor, he packs me right off to a neurologist he describes as “brilliant, no-nonsense, and thorough.”

Right, except he forgets to mention that Dr. Linda Lewis is also a very attractive, energetic Amazon of a woman—over six feet, with prematurely white hair cut short and blunt; big gray eyes behind glasses that make them even bigger; thick black lashes and brows in a strong face with wide cheek- bones and a generous mouth. Her large, strong hands look capable of doing anything well, from setting broken bones to rappelling down mountains. She listens carefully to my strange conglomeration of maladies.

When I finish, she makes a sketch in red ink on one of those human- body outlines doctors often keep close at hand for recording afflictions. It mirrors my mental picture of my pain, which feels so tangible that I envision it as a network of chartreuse neon lines crisscrossing my body. Now there’s my pain, in red ink, on paper: my own painful sensations—heard, understood, recorded. I feel a burden lift.“

You probably thought you were crazy, but you’re not,” Dr. Lewis says. I feel my shoulders drop away from my ears even more. “These sensations may seem peculiar and unrelated to you, but they draw a very clear picture for me. They follow the nerve roots all over your body.”

So it’s real. Here is objective confirmation. I’m not a hypochondriac. I take a deep breath for the first time in months. She understands me. And my pain. I will be eternally grateful just for that.

But a split-second later, it slams into me: corroboration is cold comfort. Something is actually wrong. While I struggle with this paradox, Dr. Lewis writes a flurry of blood test and laboratory slips, then hands them to me. “These tests are used to diagnose nerve disease. Maybe they’ll make the picture clearer. Come back when I get the results, and we’ll see.”

I want to get the tests over with ASAP, but it takes a lot of jiggling with my schedule to do the most complicated one. Jim and I take turns dropping the kids off at The Calhoun Early Childhood Center on 81st and West End—the school that looks like a television screen—then he rushes off to court, and I race around to script conferences and production meetings for Reading Rainbow, the PBS children’s series I write. I can’t schedule anything until we button down an outline for our newest show growing out of Keep The Lights Burning, Abbie, based on a beautiful book about lighthouse keepers in 1856 on the rocky coast of Maine. It involves a conversation with LeVar Burton, our star, a script conference with the producers and production team, and setting deadlines for my script de- livery, etc. As Head Writer, I’m responsible not only for my own scripts, but for the other writers’ work, which means even more reading and face- to-face meetings. I also have to squeeze in as much of my writing as I can before the kids get home from school.

We have a lovely housekeeper, Mrs. Sarah Parker, who takes the kids on play dates and to the playground in Riverside Park. I try to spend as much time as I can with them, alone and together—and I hate to miss our Mommy-and-kids playgroup, which began when Alex, then Anna, were infants. And then there are my ballet classes (I’m not good, but I love the discipline), lunches or coffee grabbed with my friends Jane, Sarah, and Isabel, and . . . and . . . I literally have no time to be sick.

I finally make a late afternoon appointment at the Neurological Institute and quickly learn to loathe the EMG, or electromyography. First I ride the elevator to a suspiciously quiet floor in the Neurological Institute. When asked, I shed my clothes and identity as I don a frumpy hospital “gown.” Then I wait an unconscionable length of time in a frigid cubicle until a white-coated man, whose badge identifies him as a PhD, appears, his credentials on his bad. With no greeting or explanation, no apology for the delay, he orders me to lie down on a narrow examining table, grunts “Don’t move,” and—with absolutely no preamble—jabs long pins attached to electrodes and wires deep into the most painful parts of my muscles until they make contact with my most painful nerves. In my efforts not to scream or kick, I force myself to think about something—anything—else. Dr. Josef Mengele, the Nazi doctor who took pleasure in torturing his patients, comes immediately to mind.“

We will now begin the procedure,” he announces to a spot some- where near the overhead light fixture. He still has not looked once at my face.
Begin? I thought it was over.

“Do not move,” he repeats. I wouldn’t dare.
With this, he turns on electric currents that feed into the needles stuck in my legs. Then he blandly records my pain as a wavy graph on what looks like a TV screen. It now feels as if my legs are hard-wired into electrical sockets. Or, fifty times the way it feels when I crack my elbow exactly wrong on the edge of my desk. Or, like the neurological equivalent of the electric chair. I do not die, though it crosses my mind as an attractive alternative.

I think I’m a wuss about all this, until Dr. Lewis later tells me that a well-known professional football player tore the electrified pins from his legs and ran cussing from the Procedure Room because he couldn’t bear the pain.

Finally, before I start to smoke, Dr. Mengele turns off the machine, removes the pins, and leaves the room without a word. As I dress with shaking hands, I remind myself that this modern medical variation on the medieval rack is designed to yield objective and presumably helpful measurements of how quickly my nerves receive and relay information to and from my muscles and spinal cord.

Dr. Lewis sounds undaunted when she calls to tell me the test results are equivocal. They reveal no clear pattern of nerve damage. Then she announces, in what I’m learning is her characteristically cavalier fashion, that it’s time for a nerve-and-muscle biopsy. The following week, I meet with Dr. David Younger, a lively, handsome and yes, young, neurosurgeon, who ex- plains that he will remove about a tablespoon of muscle and a smidgen of a nerve—the sural nerve—from the back of my left calf for examination under a microscope. Unfortunately, I must be fully conscious during the operation so he will know when he cuts the nerve. I’m gratified to discover that nice neurosurgeon is not an oxymoron, as he is warm and funny.

Barely a week later, I’m in an operating room, lying prone on a narrow padded table that looks more like my Nana’s ironing board than any Hollywood version of an O.R. I’ve ever seen. In fact, nothing’s what I expected: the small white-tiled room looks like a kitchen; the nurse has a beard and tells me how much his little girl likes Reading Rainbow; and Dr. Younger not only has split-second comic timing but a soul.

The biopsy turns out to be an excruciating procedure. It takes far more searching than any of us like to find that skinny skein of nerve, but while the surgeon is digging around in my left calf, we chat quietly about religion, Brahms, and this-and-that. The nurse holds my hand whenever he’s not busy, and we all make awful puns about having a lotta nerve, lacking nerve, being nervous, etc. But when Dr. Younger finally finds and severs the sural nerve, there’s absolutely no doubt: I shriek. Pure pain explodes in my leg, drills up my spine, and makes me puke.

Yet even in hell there are funny moments. When I croak, “How come I throw up when you cut a nerve in my leg?” Dr. Younger doesn’t miss a beat: “Don’t you know the leg bone’s connected to the stomach bone?” Then he comes closer and says, “Local anesthesia blocks some transmission of pain to your brain. But your body always knows when it suffers an insult like this—and it rebels.”

http://www.neuropathy.org/site/News2?page=NewsArticle&id=8255