Patient Testimonials
While Chiari malformation is not life-threatening, it does threaten the quality of life of those who suffer from it. The following patient testimonials illustrate that the team of medical experts at The Wisconsin Chiari Center are dedicated to understanding and providing the best treatment for Chiari malformation.
Dr. Parker impressed with care given to his 30-year-old daughter at the Wisconsin Chiari Center
November 2, 2009
Dear Sir or Madam:
My daughter was recently a patient in your hospital. She had a correction of an Arnold Chiari Malformation Type 1, performed by Dr. Dan Heffez, and spent 2 nights in the Surgical ICU, and 3 nights on the Ortho/Neurological Ward. I was extremely impressed with all aspects of your hospital. The physical plant was in excellent condition. Everything was extremely clean and well organized. The staff was uniformly excellent and supportive.
I am a licensed Health Care Risk Manager and a member of several Risk Management societies. With my background, I have extensive experience in identifying weak spots in hospital systems. I was very impressed by everything I saw during my daughter’s stay. I could only hope for staff as caring, careful, friendly, and helpful as I found there. The organization of the wards made for efficient care, and I never saw any significant waiting times for supplies or medication. Special therapy was well timed and communicated to us very effectively, with easily visible reminders.
The coordination of the Chairi Center, headed by Dr. Heffez, and St. Mary’s Hospital was outstanding. There was a seamless transition for my daughter and our family from the initial workup to the surgery and throughout the recovery period. There were never lapses in communication, or confusion.
I would not hesitate to refer patients to your facility in the future. You should be very proud of your entire operation.
Sincerely,
James W. Parker, M.D.
FAAAAI, FACAAI, FAACA
A Patient’s Search for an Answer
By: Sarah Ludwick
When your life depends on it, you will go anywhere, to any lengths, to save it. But for Sarah Ludwick — a corporate litigator, a wife and a mother — at age 32, she knew her time was running out and no one could tell her why.
In 2001, within five days of giving birth to her second daughter, Ludwick developed postpartum eclampsia, a rare condition that had spiked her blood pressure and caused brain swelling.
A spinal tap was performed to test for infection. As a result of the procedure, she developed a spinal fluid leak that resulted in the settling of her brain and the compression of her brain stem unbeknown to anyone. “I knew right away there was a problem,” Ludwick recalled.
She was sent to her home in Whitefish Bay to rest. “I was told the eclamptic symptoms would subside and my blood pressure would go down,” she said. But blinding headaches, short-term memory loss and overwhelming confusion impaired her ability to take care of her two-year-old daughter Hannah and infant Sophia. “Some doctors even thought I was suffering from postpartum depression,” she said.
Ludwick’s neurological condition continued to spiral downward. She had trouble grasping and holding onto things. Her balance faltered and she experienced crushing pain in her legs, numbness in her face and tingling in her hands. “They thought I might have multiple sclerosis or fibromyalgia, but I was also tested for cancer, Lyme disease, lupus and other diseases.”
She admits her symptoms were confounding. Ludwick had both cognitive and physical disabilities. She was immobile and bedridden for long periods of time, her memory continued to fail and her symptoms would change suddenly. “One week, I’d have problems with my right hand, the next week it would be my left hand.”
After two years of debilitating illness and pain, and no real diagnosis after seeing many doctors, she sought out a pain specialist in Seattle. “I flew out there barely able to do it physically. But I knew I was running out of time,” she said. The doctor told her the problem was neurological and she needed to see a brain surgeon. “He recommended Dr. Dan Heffez, a neurosurgeon who worked in Chicago at that time,” she said.
Ludwick unabashedly refers to Dr. Heffez as her hero. “He has an ability to really listen to his patents,” she said. Dr. Heffez diagnosed Ludwick with the malformation called Chiari. He also felt that the brain stem was being compressed along the left side by a major artery. In 2003, he performed surgery to relieve the compression of her brain stem.
“My condition had gotten so bad that the weeks before the surgery I had to sleep sitting up. I would have suffocated laying flat in bed. The artery was crushed up against my brain,” she said.
Heffez told Ludwick her situation was like the perfect storm – a physical predisposition to the Chiari malformation, high blood pressure and a spinal fluid leak following a spinal tap – all came together to cause her condition.
After surgery, Ludwick did well and it took her about a year to recover. She was becoming more active and getting physically stronger. “Cognitively, it was like night and day,” she said. But in 2005, she started to black out and have similar symptoms. Dr. Heffez determined that the right side of Ludwick’s brain stem was now being compressed by a second artery, a finding that was not noted in 2003. To conduct the repair, Dr. Heffez performed another similar surgery here in Milwaukee as he had recently relocated his practice from Chicago.
Ludwick continues to progress, although she has some persistent effects from the long term compression of her brain stem. A woman with finance and law degrees, she now has trouble helping her daughter with her 4th grade math. Ludwick also has some short-term memory issues and she has some level of pain throughout her body, but for the first time in a long time she can be responsible for the care of her family, which has been her goal all along.
Now at 39, Ludwick hopes her story gives hope to others. “Like me, most patients with Chiari are misdiagnosed and will see eight to nine doctors before getting a correct diagnosis. I have no doubt that if Dr. Heffez hadn’t correctly diagnosed me and done my surgery, I’d be dead,” she said. “He’s a remarkable man.”
Ludwick was willing to travel anywhere to save her life, yet it was here in her community where she found her answer. “It is amazing that this world-renowned doctor who specializes in Chiari malformations is right here. We are so fortunate,” she said referring to Heffez and his move to head the Wisconsin Chiari Center at Columbia St. Mary’s Hospital.
