From bed to UFC Gym: Naperville woman's journey through rare spinal fluid leak
Colleen Tyrrell Llacsa spent most of three years dealing with a cerebral spinal fluid leak so debilitating that, on many days, she couldn't hope to recover. She spent much of that time in bed.
Now she's working out with a trainer from Naperville's UFC Gym.
"I'm exercising," she said. "And I didn't think I would survive."
It's been a stark and welcome transformation the past two years for the 38-year-old Naperville woman who had been on palliative care before the effects of one last procedure started to set in.
"She is capable of far more than she gives herself credit for," said her trainer, Matthew Kuschert, owner and general manager of UFC Gym Naperville.
Llacsa fell ill after the birth of her third child in March 2015. By the time eight months had passed since the birth of Joshua, now 5, she was severely afflicted with numbness, weakness, dizziness, nausea, fatigue and intense headaches.
She found lying down eased some of the pain, so she spent months at a time nearly confined to her bed, while her husband, Jahary Llacsa, played dad, mom and all the other roles that come with parenthood for Joshua and his older siblings, Lucy Jane, 7, and Samuel, 10.
Llacsa saw top specialists who treat cerebral spinal fluid leaks, a condition so rare it occurs in an estimated 5 out of 100,000 people each year. She met with doctors at Northwestern Medicine in Chicago, Duke University in North Carolina and Cedars-Sinai Medical Center in California, and her father, Naperville internist Dr. Timothy Tyrrell, enlisted the help of neurologist friends.
Llacsa said she has endured 87 medical procedures, including several major surgeries as doctors tried to locate and fix tears in her dura, the lining of the spinal canal, that allowed cerebral spinal fluid to leak out. She and her doctors believe the tears occurred when she was given an epidural pain medication before she gave birth to Joshua via cesarean section.
When cerebral spinal fluid leaks into surrounding tissues, there's not enough to provide cushioning for the spinal cord and nutrients for the brain, doctors who treat the condition say. Low fluid pressure causes the symptoms.
Treatment attempts
Some procedures doctors tried for Llacsa offered short-term relief. Her illness took a toll on her family, especially Samuel, who began to experience anxiety and bullying. It was the last thing his mother wanted to see as she struggled on many days even to speak.
"I didn't care about myself anymore. I didn't care about the suffering," Llacsa said. "I cared about my kids."
In October 2017, Llacsa made her last trip to the experts at Duke University, who conducted a dural glue patching procedure. It wasn't an immediate success, but it gave her enough energy to take what she thought was one last family vacation, to Florida, in December 2017.
The trip backfired as Llacsa suffered a blood infection and a blood clot. She took an emergency flight home and "almost died," she said.
More time in bed followed, and what happened next isn't medically clear. But in February 2018, Llacsa started getting out of bed for minutes at a time, then realizing those minutes could expand into hours or longer.
She said her doctors think the recovery has happened because all of her procedures over the years patched enough of the tiny punctures in her dura to stop the cerebral spinal fluid leaks.
The recovery has been uneven, as she's run into spells where symptoms have returned and she's been back in bed for up to three weeks.
But the setbacks, Llacsa said, have been part of the blessing of this newfound normalcy. They help her keep perspective when she loses gratitude for the abilities she's regained and focuses, instead, on family moments she missed, weight she wants to lose or the coronavirus pandemic.
"Whoa, hold on, don't complain," she tells herself. "You are so lucky to be able to stand."
Local gym's help
The Llacsa family started taking Samuel to a kids' empowerment group at UFC Gym Naperville shortly after it opened in May 2018.
The gym, co-owned by Kuschert and decorated UFC featherweight Ricardo Lamas, might seem like it's all about mixed-martial arts and building the next superstars. But it's actually about helping members gain self-esteem and leave each day better than they were when they walked in, owners say.
The strategy has worked for Samuel.
"His whole personality changed. He said to me, 'This is such a special place, Mom,'" Llacsa said. "It has been the best thing for Samuel, and now it's the best thing for me."
Llacsa didn't think she could work out. After years of illness, she was happy to get out of bed.
But talking with Kuschert and Lamas changed her mind. She decided to give an exercise routine a try.
Llacsa's sessions with Kuschert began in February, mainly as physical assessments - what she could and couldn't do, how much the years in bed had atrophied her muscles. With degrees between them in biology, chemistry, exercise science and nutrition, Kuschert and Lamas give clients the confidence they won't risk injury.
"We're bringing that attitude and energy together with the science of what actually works," Kuschert said.
After a month of in-person sessions, stay-at-home orders closed the gym, so Llacsa's workouts with Kuschert have gone virtual. Samuel usually keeps tabs on his mom's progress.
"It makes me work harder," she said.
Llacsa breathes hard through a series of squat presses during one recent workout, then smiles. There is so much she can do.
She wants to incorporate UFC Gym into a fundraiser she hopes to plan for the Tyrrell Family Foundation, which formed to support research into cerebral spinal fluid leaks. She wants to set a good example for her children. She wants the positivity of her recovery to shine through the struggles of the pandemic.
"It's tough on people, but I'm free," she said. "I'm free to walk. I'm free to breathe."