SCHERERVILLE | For 20 years, Cyndi Vanek, 44, has battled a rare brain structure disorder called Chiari malformation, which are structural defects in the cerebellum, the part of the brain that controls balance, located near the brain stem.
“The cerebellum slips out of the base of the skull and puts pressure on the spinal cord,” Cyndi explained.
“I never had any problems. Then in 1994, I had a snow skiing accident,” she said.
Just after the skiing accident, Cyndi also learned that she was pregnant with a daughter, Brittany.
In 1994, Cyndi was the young mother of a 2-year old son, Eddie. She developed symptoms that included severe headaches, nausea, difficulty swallowing, falling and numbness on one side of her body.
“I was told the symptoms were because of my pregnancy. When my arm went numb (after giving birth), I was told it was because I was holding my baby,” she said.
As the symptoms persisted and worsened, she was diagnosed with multiple sclerosis. However, many of her health problems didn’t fit that diagnosis.
With the symptoms progressively getting worse, Cyndi balanced working as a registered nurse at Community Hospital of Munster and raising two small children with husband, Ed. While working at Community, she learned about the Chicago Institute of Neurosurgery and Neuro Research and decided in 1997 to seek help there.
An MRI revealed the Chiari malformation. That led to the first of 30 brain surgeries for Cyndi.
The first neurosurgery put in a bovine graft to hold up her cerebellum. However, her body rejected the graft and she endured numerous infections. With high intracranial pressure building in her brain, surgeons put in a shunt to draw the fluid from her brain into her heart area.
Multiple shunts failed and Cyndi developed cardiac and neurological problems. Meningitis and strokes were among the neurological conditions while she was diagnosed with holes in her heart.
“My children’s upbringing was with me in the hospital. I lived in the ICU,” she said.
But, the family developed ways to keep their bonds strong, Cyndi said.
For an open heart surgery, Ed, Eddie and Brittany made fortunes that were given to everyone Cyndi passed on her way to the operating room.
“It made us all laugh,” she said.
When Cyndi needed another shunt placed in her brain, Brittany and Eddie made a dramatic show of shaving their mother’s head.
“Brittany came down stairs in her Barbie shoes and outfit and Eddie turned a jacket around and said he was Edwardo of Schererville,” she recalled.
“We try to live normally, but it’s very scary (for the children and husband),” she said. “We’ve had unbelievable support. My life would be nothing without those three people.”
The family has learned to have a sense of humor, to live each day fully and to give back to others for the blessings they have, she said.
“We’re really blessed. I’m so proud of my kids. I couldn’t have done any of this without my family’s support," Cyndi said.
Cyndi’s pride in her children shines through everything she said.
Eddie Vanek, 22, was just promoted to the rank of corporal in the Marines, while Brittany, 19, and a student at Purdue University West Lafayette, was elected ambassador for the College of Education at the university.
“I’m so proud of my kids. This Mother’s Day is all about my kids,” she said. “If I had it to do over again, I wouldn’t change a thing.”