Naperville woman, family raise awareness of spinal fluid leak disorder
Colleen Tyrrell Llacsa's brain hurts. Seriously.
She has double vision. Her hands are numb. Her arms and legs are weak and sore. She feels like she's about to throw up. She can't focus.
And this is on a good day.
For more than two years the Naperville woman, 35, has been suffering from a cerebral spinal fluid leak, which has caused her a debilitating list of symptoms that initially were misdiagnosed as migraines.
The rare, nearly unknown condition causes invisible yet debilitating pains throughout the body because the pressure of the fluid protecting the brain and spine gets too low. Even the top experts who treat the condition tell Llacsa she's nearly out of options.
She feels it's hard to hope to be a normal mom again, but she still hopes to get better -- and to bring about advances in treatment that will allow cerebral spinal fluid leaks to be addressed more precisely.
Now Llacsa's family is stepping up to help her -- and others like her -- battle the condition by attracting more research dollars for better imaging technology.
Her relatives, including her sister and her father, longtime Naperville internist Dr. Timothy Tyrrell, established the Tyrrell Family Foundation through the DuPage Foundation to begin to raise money for research.
The foundation's first event is set for Thursday, when the group hosts an evening of tapas at Meson Sabika in Naperville.
"There's so little awareness about this illness that it's hard to watch," said Llacsa's sister, Katie Weimann of Oak Park. "But it's also hard to watch and not take any action."
"Being a mom was like the most amazing thing in the world for me," said Colleen Tyrrell Llacsa of Naperville. She once loved the chaos of Samuel, 7, Lucy Jane, 4, and Joshua, 2, but now finds it difficult to care for them because of debilitating headaches and fatigue caused by a cerebral spinal fluid leak.
- Bev Horne | Staff Photographer
Not getting better
Llacsa describes her pains vividly: "Like there was a plastic bag over my head." "Like a knife going into my head." "Like my whole brain was vibrating." "So sick I couldn't walk." "I'd have episodes when my hands were shaking."
Those episodes haven't stopped.
The saga began when Llacsa's third child, Joshua, was born in 2015.
Llacsa had her son via cesarean section. After she was given an epidural pain medication, she remembers getting very sweaty and not feeling well.
For three weeks after Joshua's birth, Llacsa stayed in bed with extreme fatigue, wondering if she had postpartum depression or if the strain of having a third baby by caesarean had caught up to her.
"Physically, I could not move," she said. "I felt so unwell."
Her doctors soon diagnosed migraines, which her father says run in the family. But the treatments didn't help during several visits to hospitals in Hinsdale and Naperville.
So in November 2015, doctors tried her first blood patch, a procedure in which some of a patient's blood is drawn and then reinserted into her spine to create a clot and cover a hole that's allowing cerebral spinal fluid to leak.
Llacsa has had six blood patches and two extensive surgeries since. While she has felt better for short spells, none of the procedures have brought permanent relief.
She's visited experts in cerebral spinal fluid leaks at Northwestern Medicine in Chicago, Duke University in North Carolina and Cedars-Sinai Medical Center in California. She still awaits a cure.
She's lain flat for days on end; that equalizes the cerebral spinal fluid and prevents it from dripping out into the body, making the condition more bearable.
"I've been having days where I can't get out of bed I'm in so much pain," she said one day in July. "I don't seem to be getting better."
Colleen Tyrrell Llacas of Naperville during a hospital stay. She began suffering cerebral spinal fluid leak after the birth of her third child in March 2015.
- Courtesy of Colleen Tyrrell Llacsa
Cerebral spinal fluid leaks occur when something causes a tear in the dura, the lining of the spinal canal, said Dr. Sameer Ansari, an interventional neuroradiologist at Northwestern Medicine in Chicago who specializes in treating diseases of the brain, head, neck and spine.
These tears can be caused by major trauma, such as a gunshot wound, minor trauma such as a weightlifting injury, or as a side effect of a medical procedure, Ansari said.
When the dura tears, it allows the fluid inside the spinal canal to drain into surrounding tissues.
This fluid provides cushioning for the spinal cord and nutrients for the brain, and the brain produces it continuously.
But people with leaks still end up with low fluid pressure, which Ansari said causes such symptoms as the terrible headaches.
These leaks happen to an estimated 5 out of 100,000 people every year, according to a report on the condition published by the National Organization for Rare Diseases. But even leading researchers say the exact prevalence is unknown.
Within his Naperville practice, Tyrrell said he has treated a small number of patients who developed the condition. But he didn't know leaks could be chronic. So when his daughter first was diagnosed, he expected her symptoms would relent.
"In fact, most of the neurologists I talked to didn't know about chronic leaks," he said.
With the Tyrrell Family Foundation, he hopes to bridge some of this knowledge gap. The foundation plans to participate when Cedars-Sinai hosts the first medical symposium about cerebral spinal fluid leaks in October in Los Angeles.
Tyrrell says he expects top radiologists will attend to learn what can be done to help leaks show up more readily in medical imaging.
Ansari said most leaks can be found if doctors try various imaging techniques, machines and body positions for the patient.
But Llacsa's leak so far has eluded detection, her family says.
"If you can't find the leak, then you're guessing," Tyrrell said. "You can't help someone if you can't find it."
Colleen Tyrrell Llacsa has spent many hospital stays staring at the ceiling while suffering from a cerebral spinal fluid leak. The condition, which she began experiencing in March 2015, causes debilitating headaches that only improve when lying down.
- Courtesy of Colleen Tyrrell Llacsa
Loved 'the craziness'
Since Llacsa's illness began, she couldn't continue her job as a social worker. She's hired help with caring for her children.
Her husband, Jahary Llacsa, has picked up much of the slack, doing laundry, cleaning, cooking and being both dad and mom to Samuel, 7, Lucy Jane, 4, and Joshua, 2.
Lucy Jane knows complicated medical terminology despite her young age, her father says.
And Samuel has "started making things up," Jahary said, saying at school that he takes medicine for headaches, "because of what he was seeing with mom."
"It's hard to adjust to this new normal," he said.
Jahary's bosses at Naperville Bank & Trust have been "fantastic," and sister Weimann left her job in international education in April to pitch in. But it still isn't enough.
"We're going to raise money to have her children cared for," Weimann said, "so that she can focus on herself and her husband can build at work."
Llacsa was an activist, working for former president Barack Obama's campaigns and for an international humanitarian organization. She met her husband while on a mission trip in Bolivia. She has two master's degrees and loved her working-parent life.
"Being a mom was like the most amazing thing in the world for me," Llacsa said. "I loved kids running around and the craziness."
She now hopes to be an activist once again for others suffering from cerebral spinal fluid leaks, bringing more research funding to the disease and more expert treatment options to the suburbs.
"It's difficult to get care in the Midwest with experts mainly in North Carolina and California," her father said.
"It's time to increase awareness."
How to helpColleen Tyrrell Llacsa's family is helping her fight a cerebral spinal fluid leak by raising money for her child care and home help expenses and by starting a foundation to raise money for research on the condition.
What: Colleen Tyrrell Llacsa family support fund
How to give: Mail a check payable to Colleen Tyrrell Llacsa to Naperville Bank & Trust, 555 Fort Hill Drive, Naperville, IL 60540. Include email address and the word "donation" on the memo line.
What: Tyrrell Family Foundation
How to give: Visit http://dupagefoundation.org/, click "donate" in the top left corner and select "Tyrrell Family Foundation" from the drop-down menu.