How a Polio Survivor Stopped the Crippling Pain of Neuromas

Decades after surviving a mild bout of childhood polio, Shirley Pincus suffered pain so severe she was bedridden for months at a time. Learn how donated tissue helped return normalcy to her life.

Overcoming Pain from Childhood PolioShirley Pincus with her husband, Dan who stood by during long periods of pain. He drove her every where, handled household chores and was always ready with fresh ice packs. Just four years ago, Shirley Pincus, 66, was in such insurmountable foot pain that she often felt as if she were standing on burning coals, rooted to the spot and unable to move away from the heat. “Sometimes it felt like my foot was being crushed in a vice or that someone was pricking me with a paring knife,” recalls Shirley, who lives with her husband in Hampshire, Illinois, outside of Chicago. “The pain would usually last from mid-afternoon until late into the evening.”

Today, Shirley, pain-free and able to do just about everything she could before the pain robbed her life, is grateful to the doctor who cared for her. But it took perseverance, patience, and a couple of ill-fated misdiagnoses before she found her answerand underwent the surgery that saved her from a lifelong sentence of pain.

When Pain Is Caused By a Childhood Illness

As a child, Shirley came down with a mild case of polio, an infectious viral disease that attacks the nerve cells and sometimes the central nervous system, causes muscle wasting, paralysis, and even death.

In 1949, the US polio epidemic was at its peak. The first polio vaccine, an inactivated polio vaccine, was developed by Jonas Salk and came into use in 1955. In 1961, an oral polio vaccine developed by Albert Sabin came into commercial use but Shirley, who lived in a rural area, did not receive either vaccine.

Shirley Pincus, Childhood Polio SurvivorShirley, age 8, on vacation in Virginia wearing leg braces while riding a bear.The case of polio that she developed was relatively mild, only affecting her lower left leg. This leg was smaller than her right leg, and she not only had a “drop foot” on the left side but also weak left leg muscles.

She wore leg braces round the clock for awhile and underwent a couple of corrective surgeries. In one surgery, doctors tried to lengthen the tendons in her legs in order to address the drop foot. In another, they implanted pins in her toes in hopes of straightening them out.

As a teenager, Shirley broke some bones in her foot and had more surgeries to try to reset these bones. Unfortunately, during these surgeries, some nerves were injured, and over time, these turned into neuromas. (In a neuroma, also called a pinched nerve, the nerve keeps growing, creating a mass of twisted wires and causing pain.)

Through all of these surgeries, Shirley led a relatively normal life, at least until about 10 years ago. At that point, Shirley, who worked as a human resources director for a small automotive training company, began to suffer from pain in her left foot. After several months, the pain began to interfere with her ability to work. She started using her laptop to work from home for as long as she could, but typically resorted to taking opioid pain medications by late afternoon.

Shirley’s podiatrist told her she needed to have corrective surgery on her toes in order to straighten them out. The surgical procedure was performed, but the severe pain continued. The podiatrist then sent Shirley to a pain management specialist, who injected a nerve block into the left side of her spine. “He said that would alleviate the pain for a year or two,” Shirley recalls, “Instead, it lasted for only a couple of months and then the pain found its way back to me.”

On the Verge of Giving Up

Polio tends to cause the affected parts of the body that are furthest from the brain to become disfigured. In Shirley’s case, the toes on her left foot were curled up, and her left foot was a full shoe size smaller than her right foot. When a podiatrist recommended that she get the tips of two toes amputated to relieve pain, Shirley sought a second opinion, only to learn that the second doctor concurred with the first.

After the tips of two toes were amputated by a podiatrist, an artificial donor bone graft was implanted to rebuild the joint in her big toe. Shirley underwent physical therapy for eight months. But the pain continued, leading to severe depression. It seemed that she had run out of options. In fact, one doctor she consulted ended up walking her to his office door and wishing her good luck while confirming that he could not determine what was wrong.

“I was anxious, miserable, and desperate,” she recalls. Then one night she Googled “doctors who treat limb deformity” and Dr. Edgardo Rodriguez’s name popped up. (Shirley chose this combination of words for her Google search because she felt that her limb was deformed due to polio, she explains.)

Dr. Rodriguez diagnosed three neuromas. “In Shirley’s case, earlier corrective surgeries on her limbs due to polio injured peripheral nerves in her leg and put her at risk for developing these neuromas,” he explains.

In December 2013, Dr. Rodriguez removed all three neuromas. He repaired the damaged nerve tissue using a human peripheral nerve allograft. (An allograft refers to a bone, ligament, tendon, or a section of skin that is transplanted from one person to another.) Allograft nerves are donated just like other tissues and organs are donated around the country—from cadavers.

Donated nerves and tissues go through a rigorous screening process before they are selected. Once selected, the nerve is processed and sterilized in order to mitigate the risk of donor-to-recipient disease transmission. This procedure does not require an additional surgical site, and processed nerve allograft does not require immunosuppression. It provides a bridge for the nerve that eventually will be incorporated into the recipient’s body, becoming her own tissue.

“A neuroma causes damage to a specific segment of a nerve,” Dr. Rodriguez explains. “In the surgery, the doctor removes the damaged nerve tissue where the neuroma has formed and replaces the damaged nerve tissue with a nerve graft from donated tissue.”

Shirley’s seven and one-half hour surgery was followed by a long recuperation period during which her nerves regenerated. All told, it took a full 18 months to complete the process. Able to continue working for the first four months of the recovery period, Shirley decided to retire to give her full attention to her health.

Today she walks without assistance and she's back at the gym, too. Now retired, much of her time is dedicated to helping others by raising awareness about the importance of tissue donation. Shirley speaks to patient groups across the country and works with the nonprofit group Gift of Hope. She is also a speaker for organ and tissue donor awareness programs through the Office of the Secretary of State in Illinois.

In 2015, Shirley was honored as a recipient of donated nerve tissue during the Rose Bowl Parade. Shirley loved the experience of riding on the Donate Life float and continues to volunteer for the group.

Shirley at the Rose BowlShirley in front of the Donate Life float at the 2015 Rose Bowl Parade.Human nerve tissue can be donated just as organs, skin, bones, and heart valves can be. Most people can be a tissue donor.

Shirley says she has gratitude for many people, most especially her husband (the couple has no children). “He was my saving grace,” she says. “He understood my level of pain and was my go-to person for whatever I needed.”  

Besides helping her get in and out of bed, changing her ice packs, and driving her everywhere, he brought her dinner on nights when she was in too much pain to get out of bed, even though he’s not a cook. He also made sure that a fully decorated Christmas tree was installed in the couple’s bedroom. Shirley’s two sisters pitched in as well with frequent visits during her recovery.

The surgical procedure used to repair Shirley’s damaged nerve tissue is highly promising for patients with pain caused by neuromas, Dr. Rodriguez says. “It is a very good option for many patients with chronic, disabling, and intractable limb pain caused by neuroma formation,” he explains.

 Other than arthritis in her ankle, she is pain-free and is committed to devoting as much time as possible to helping others who are facing health challenges that lead to severe pain caused by neuroma formation. “No one should have to be in pain,” Shirley says.

For information about becoming a tissue donor and the procedure used on Shirley, visit Avance® Nerve Graft.

Updated on: 10/24/17
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