A Lifetime of Pain in a Leg that Isn’t There
When Karen Griffin was 20 years old, she was sitting around the dinner table with her family and her grandmother, experiencing pain brought on by their voices. As the noise in the room escalated, she would get spasms and pain in her leg.
“You’ve got to be quiet because you’re making my leg jump,” she told them.
But Karen didn’t have a leg. Her right leg had been amputated above the knee several weeks earlier, when her doctor found synovial sarcoma, a rare and aggressive cancer. The tumor in her calf was found during exploratory surgery after years of childhood pain: her leg continually ached and was temporarily painful if it was unintentionally bumped.
Now, the leg was gone—but still, she felt it spasming.
REAL PAIN IN A NONEXISTENT LEG
Karen, now 68 and living in Texas, continues to experience pain in her amputated leg. The neuropathic pain is constant, but it varies in intensity. It can be sharp, stabbing, and burning at times, and then it’s tingling, pulsating, and feels like an electrical undercurrent at other times. The spasms, sometimes lasting up to 36 hours, can be so severe that she’ll double over in pain. In the past, they sometimes continued for as long as four days.
The pain runs up and down, into her leg that isn’t there. She feels this phantom pain in the ankle and toe joint of her nonexistent leg.
“It feels like someone has taken a hot cattle prod and stuck it in the end of my leg,” she says.
AN EYE-OPENING DIAGNOSIS
Karen experiences pain from other medical conditions as well. She has osteoarthritis, psoriatic arthritis, fibromyalgia, ankylosing spondylitis, and TMJ. Over the years, she’s had 18 surgeries, including knee and hip replacements, rotator cuff repair, and back surgeries. Pain from her other medical conditions seems to trigger and exacerbate the neuropathic pain in her amputated leg.
Karen also experiences neuropathic pain from complex regional pain syndrome (CRPS). CRPS, previously known as reflex sympathetic dystrophy syndrome (RSD), is a long-term neuropathic pain condition that can follow a trauma—in Karen’s case, her amputation. She was diagnosed with then-RSD in 1994 by a neurologist in Vero Beach, Florida.
“When I walked in to see him, he looked at me and said, ‘I know exactly what’s wrong with you,’” she says. “It was the most wonderful thing. When I researched CRPS and learned about it, everything I had been living with since my amputation made sense.”
Understanding that her sympathetic nervous system is registering pain explained symptoms like her profuse sweating and fluctuating blood pressure. And these symptoms have served as a signal of when pain may be happening in her body.
She’s had trigger point injections and nerve blocks to try to decrease her pain from osteoarthritis and keep it from setting off her phantom pain. Being aware of her body’s pain response allows her to take an anticonvulsant medication to prevent the neuropathic pain from escalating, but it doesn’t always help.
When Karen was diagnosed with cancer in 1974, she was a sophomore in college studying to be a nurse at Eastern Mennonite University in Virginia. She was in her spring semester when the doctor told her that her leg needed to be amputated immediately, prompting a swift succession of life-changing events. Surgery to remove her leg was scheduled for the next morning. The day after, she had a post-op fitting to place a pylon (a simple, prosthetic-like device that enabled her to start walking again as she healed from the surgery), and started physical therapy, walking right away with the parallel bars. She returned to school that summer to make up classes and graduated on time with a bachelor of science in nursing in 1976.
Karen was determined to protect her parents from additional worry. Her cancer diagnosis was especially distressing to them because Karen’s older sister died of leukemia at the age of 12.
“I can remember that I was determined to be normal for my parents,” she shares. “I remember my surgeon telling me that I was the star patient.”
Despite the daily pain she was in and the painful sores from her wooden prosthetic, Karen worked as a registered nurse for 16 years.
“I used to joke that I should have bought stock in cotton balls and Band-Aids because I used so many of them between my skin and the wooden socket,” she says. “Maybe this is when I got used to living with pain.”
During her career, she worked with patients with brain injuries, spinal cord injuries, and chemical dependency. Her career ended in 1992 after her excruciating lower back pain, which made it difficult to stand for hours at a time, wasn’t relieved by surgery
Just four years after her amputation, Karen was a spokesperson for the American Cancer Society as its Nurse of Hope for the state of Virginia. Through speaking engagements, she told others about her nursing career and the hopeful side of cancer. But she hadn’t yet processed the trauma of losing her leg.
“I was becoming who I thought everyone wanted me to be,” she says.
Nine years after her amputation, she experienced suicidal thoughts. “I decided that I just can’t do this anymore,” she recalls.
She was driving alone down the highway at 90 miles per hour at night in the rain, hoping to wreck the car, when she began to think of her patients with spinal cord injuries. This thought stopped her from crashing the car. After she returned home from work one day soon after, her roommate, who knew how she’d been feeling, gave her a number to call for help. She was in therapy for four years.
“I was angry with God because he took my sister, and then my leg, and then my grandmother died from cancer,” Karen says.
Therapy helped her, and today her faith in God plays a big part of her life. She sings in her church choir weekly and is making a quilt with the other women there. She sends anonymous birthday cards and Christmas baskets with baked goods.
She says helping someone or offering kind gestures can distract from her neuropathic pain.
“My faith is the foundation for everything in my life,” Karen shares. “My bad days could be so much worse if I didn’t have my faith to help get me through them.”
She also volunteers her time with the Amputee Coalition of America and the San Antonio Amputee Foundation, serving as a peer visitor and offering support to other amputees, both locally and out of state.
LIVING WITH PAIN, FINDING PURPOSE
Pain is a facet of Karen’s daily life. She knows to accept her limitations and pace herself in the one-story house she shares with her husband and two dogs.
“I might get my laundry done today, but it might not get put away until next week,” she says.
She rests as much as she needs to, eats healthy and gets plenty of sleep, drinks lots of water, and works to reduce stress. When she and her husband take hunting or fishing trips, she’ll use a wheelchair at the airport so she doesn’t have to walk long distances.
On good days, she enjoys cooking and baking, caring for her plants, reading, being with her dogs, and sitting on her front porch in view of the 15 bird feeders on her property. Watching the birds is peaceful and calming for her, which helps keep her pain at a lower level. On bad days, she’ll spend most of the day in bed, getting up mainly to eat.
After nearly five decades of living with neuropathic pain, Karen knows it’s not helpful to compare herself with others. Complaining doesn’t make her feel better, she says, and she refuses to let pain control her life.
“There is always someone worse off than I am,” she says. “Everyone has something to deal with, and this is just what I have.”
There is always someone worse off than I am.
Everyone has something to deal with, and this is just what I have.”