Kathy Kuhl’s WalkTalkConnect is a Vehicle for Awareness and Communication about Spinal Cord Tumors

Kathy Kuhl’s experience with a spinal cord tumor calls her to advocacy.
Kathy Kuhl and her dog, Nelli, on their back porch.

It was a rare situation, one that made Kathy Kuhl of Chanhassen wish for the familiarly annoying doctor’s appointment calendar-delay. Instead, Kathy was informed that a prominent neurosurgeon had made room in his schedule that very afternoon, late in 2014, to see her about an MRI showing what looked like a cancerous tumor on her spinal cord. The surgeon met with Kathy and her husband, Tom, for an hour.

Kathy recounted her history: 47-year-old woman gets pain between her shoulder blades when she lifts the heavy boxes of wax and other supplies needed for her candle-making business. ‘‘So what?” she thought, until the pain and burning sensation disturbed her sleep, until neck stiffness and wracking headaches made her wonder what was wrong.

A few weeks later, Kathy and Tom knew what was wrong: intramedullary thoracic ependymoma. “Intramedullary means it’s inside the spinal cord,” says Kathy, now an expert in many things she might not have wished to be expert in. “Even Tom and I could see, on the MRI, how the tumor had coiled itself within the other tissue.”

An estimated four-hour surgery lengthened to eight hours. When she woke up afterwards, Kathy had no movement and no feeling anywhere below her diaphragm. Although frightened, word from the operating room was that any paraplegia was temporary. “I figured I’d be home in a week,” Kathy says.

She was an inpatient at Courage Kenny Rehab for nearly a month. “I started moving my right foot a day after surgery,” recalls Kathy; movement in the left foot occurred much later. “For weeks I had to buzz a nurse several times a night to roll me over in bed since I couldn’t do it on my own. Not to mention needing help with using the bathroom, showering…my independence was stripped away in those early months, forcing me to give over ‘independent, strong, confident Kathy’ to nurses and my husband.”

The good news is that the pathology report indicated the tumor was benign. The bad news, Kathy learned, is that “benign” can be a relative term. This particular tumor might not exhibit the qualities that identify it as cancerous, but it can recur. And while resection of other tumors might have little effect on surrounding tissue, removing an ependymoma from the spinal cord is often associated with persistent neurological changes.

It is one of the many “Aha!” moments Kathy wants to share via WalkTalkConnect, the non-profit she and her husband have set up as her recovery unfolds. “I’d never even heard of a spinal cord tumor,” Kathy says. “And I certainly didn’t understand the neurological losses that can follow.”

Kathy had to learn to walk again; others have to re-learn to speak. “It can be a very isolating experience,” she says. WalkTalkConnect for Brain and Spinal Cord Tumors is Tom and Kathy’s response. Its primary purpose is awareness but also serves as a platform for fundraising and communication.

In Kathy’s case, by the time she left Courage Kenny she was walking with a walker and sometimes with only a forearm crutch. Her left side lagged in motor recovery and still does, although she now walks without assistive devices. Her recuperation continues but she doesn’t have the speed and agility she’s used to. She’s had to give up running, which she loved and which was an essential part of her identity, physical and psychological health, as many runners appreciate. And if normal sensation is something we all take for granted, Kathy no longer has that privilege. Much of her sensitivity to touch has not returned below her mid-thoracic region: “If I’m sitting next to Tom and he puts a hand on my knee, I can’t feel it,” she says. She frequently feels “pins and needles” and just about always has the sensation of wearing “clothing around [her] middle and on her legs that’s about five times too tight.” All of it varies day to day. “Some days are better than others,” she says.

Kathy had eight months of outpatient physical therapy and she resumed driving by April 2015. Through it all, her husband Tom, neighbors and friends pitched in with transportation and dog walking, even temporarily conducting aspects of her business, NelliDesigns.

Early on, it wasn’t easy, especially for Tom. “Taking over pretty much everything” was hard, he says, especially as he continued his job in industrial sales. Kathy’s advice to friends and family wishing to help a person in her shoes (now flats, she good-naturedly laments, due to residual balance and strength issues): “The best thing friends can do is to allow you to be honest…to let you cry and grieve your losses, let you scream and have tantrums when your anger gets too great.” They need to understand, says Kathy, that “you are grieving the loss of a life you were living and a future you saw for yourself. And that you now face uncertainty in how far you will recover neurologically, and what that will mean and look like.”

“Kathy and I have always believed in paying it forward,” says Tom, and WalkTalkConnect is their current vehicle for doing so. Last May, the Kuhls raised $3,500 for the Courage Kenny Rehabilitation Institute through a 5K fun walk. Courage Kenny is planning to tell Kathy’s story to raise awareness about WalkTalkConnect in their marketing materials. The Kuhls are currently considering for whom they would like to raise money, and awareness of spinal cord and brain tumors, next. “It has to do with a choice we all have in the face of change,” says Kathy. Losing a sense of self can lead, unfortunately, to a loss of connection with others, she says. “I hope through WalkTalkConnect we can shed light on this.”

 


(Photos from the WalkTalkConnect 5k last May. The event raised $3,500.)