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Despite a devastating diagnosis, local resident found they had options

Posted on January 14, 2008

Animation video depicts minimally-invasive coiling procedure used by Dr. Lopes at Rush University Medical Center to treat patients with brain aneurysms.

By Susan Stevens | Daily Herald Staff

Laurie Radtke knows the value of a second opinion. The Johnsburg mother sought 27 of them when her 7-year-old daughter Taylor was diagnosed with an “inoperable” brain tumor.

After an exhaustive, nationwide search, the Radtkes found a surgeon willing to perform the risky surgery. Today Taylor is doing fine, though she does face struggles as a result of nerve damage. Her mother has turned into a resource for other families facing similarly devastating diagnoses.

“You just don’t give up,” Laurie Radtke said. “Don’t settle. Be a parent and fight for your kid’s life.”

One thing she and other families have learned: “Inoperable” doesn’t always mean inoperable.

Diagnostic debate

When Lyn Kearns of Arlington Heights suffered two brain aneurysms in 2006, the neurosurgeon she consulted said it was too risky to operate because of her age — 75.

“He suggested I just go home and live my life and enjoy, and hope my aneurysms wouldn’t burst,” she said. “But then you could end up like a vegetable in a nursing home, and that was my biggest fear.”

Her children urged a second opinion. Dr. Demetrius Lopes at the Chicago Institute of Neurosurgery and Neuroresearch was skilled in a less-invasive surgery that uses a catheter to thread soft coils of metal into the aneurysm, reducing the pressure.

Kearns had the surgery in May 2007 and is doing well.

“I would tell anyone with any life-threatening problem, get at least two or three opinions, and don’t give up,” Kearns said.

How could doctors have such differences of opinion, especially in life or death cases?

Blame scientific advancement, said Dr. Robert Spetzler, the Arizona neurosurgeon who operated on Taylor Radtke. Leading doctors are always pushing the boundaries of what’s possible, he said.

“We’re now able to reach portions of the brain that we just a short time ago considered completely out of bounds,” Spetzler said.

It takes a while for word of these inroads to spread. It can be two years or longer before case studies are reported in medical journals, which is a major way doctors learn about developments in their fields. It will take longer still for doctors to learn the new techniques.

Doctors who regularly perform risky procedures are more likely to take on a difficult case. A doctor who declares a tumor inoperable might simply lack the specific experience and skills to operate on that particular tumor, said Dr. Edward Mkrdichian, a neurosurgeon at the Chicago Institute of Neurosurgery and Neuroresearch.

“When people come to me for a second opinion, sometimes it is very hard to convince them I can operate, because the other person said they couldn’t operate,” he said.

Some patients are better candidates for surgery to begin with, Mkrdichian said. Doctors consider the age and health of the patient; younger people might be able to recover more easily, but they also face a lifetime of disability if something goes wrong.

In the case of a brain tumor, location is critical. Some really are inoperable, in any hands, Mkrdichian said. Invasive tumors in a sensitive part of the brain, such as the areas that control speech and movement, are too risky to approach.

In Taylor Radtke’s case, it was a combination of a murky diagnosis and the troubling location of the tumor, next to the girl’s carotid artery, that made many doctors reluctant to risk surgery. They feared the surgery would kill her.

The Radtkes had to find a pediatric neurosurgeon who specializes in skull-based surgeries. Even for Spetzler, though, it was a groundbreaking case.

“It’s always a balance between risk of surgery and the benefits you perceive from surgery,” Spetzler said. “When the risks outweigh the benefits, you have no business pursuing an operation.”

For patients, the quandary is in knowing which category you fall into — the really inoperable, or the sometimes inoperable. Finding the answer can require patients to work the hardest when they’re feeling most vulnerable.

Detective mission

The hardest part might be finding the specialist who has done the most advanced work in your particular illness.

Often, your first doctor will know another specialist. Ask who he or she would go to with this problem.

“Then it becomes a detective investigation,” Spetzler said. “You find out who has written about that topic or the disease, where the latest investigative research protocols are being carried out, the surgeon who has the most experience.”

If that surgeon isn’t the right doctor, he or she likely will know who is. Doctors network, and super-specialists all know the other experts in their field.

For example, Dr. Maria Rosa Costanzo, medical director of the heart failure program with Midwest Heart Specialists, knows which heart surgeons are willing to take on riskier patients who have been rejected by other doctors.

“When you see this type of patient all the time, things that may seem extreme to other physicians are not extreme to us,” she said.

Your own network is also valuable. Laurie Radtke spread news about her search for a doctor at her children’s school. Her mother, a nurse, called on former colleagues.

“The more people that are aware of the situation, the more people can help,” Radtke said. “We had people as far away as Colorado and California e-mailing us with names of doctors in Illinois.”

You have to know when to stop, too. Most doctors say two or three opinions are enough, especially if all the doctors agree on the diagnosis and recommended treatment.

“You don’t want to delay getting treatment because you’re spending so much time getting multiple opinions,” said Lynette Paver, a nurse and cancer care liaison at Advocate Good Samaritan Hospital in Downers Grove. “At some point, you have to make a choice and go with it.”

Doctor relations

Researching potential treatments and lining up second opinions became a full-time job for Laurie Radtke. She went through four gatekeepers to talk to some specialists.

“It’s almost like dealing with someone who is completely famous,” she said. “It’s a lot of red tape, a lot of making phone calls and being persistent and not giving up.”

Those excellent reputations can come with equally big egos.

Palatine resident Judy Strauss, whose adult daughter was diagnosed with a noncancerous brain tumor in 1998, found herself bristling at some doctors with lousy bedside manners.

“All the top doctors are a little cocky,” she said. “But they can be, because they are so good.”

Strauss ultimately found a doctor both skilled in surgery and with a warm demeanor. Her daughter, a teacher in the North suburbs, had two surgeries at the Chicago Institute of Neurosurgery and Neuroresearch.

“My biggest thing was we had a doctor who Robyn believed in, and he was the best,” she said. “Dr. Cerullo would be very honest with us. To this day, he’s the same way when she goes back.”

Just like patients have different personality types, so do doctors, Paver said.

“You get second opinions not only to find out what treatment options are available, but to find a physician who’s a good match for you,” she said. “You want to find a physician who you can communicate with and trust.”

Your own advocate

Patients who’ve navigated their way around an “inoperable” label say the investigative role is habit-forming.

A Barrington woman who found someone to remove a life-threatening tumor later relied on her new skills to avoid a different operation.

In 2003, as a new mother, Stacie Switzer was diagnosed with a life-threatening spinal cord tumor deemed “inoperable” by several neurosurgeons. She eventually found one willing to perform the risky surgery, and she recovered well enough to run a marathon.

Last year, Switzer started to feel pain again. Toward the end of the day, she couldn’t move her fingers.

Due to a complication of the first surgery, her cervical spine was compressing. A panel of doctors recommended fusing seven vertebrae; it meant Switzer wouldn’t be able to bend or rotate her neck, and likely wouldn’t run again.

In the three weeks before her consultation with a surgeon, Switzer sought other options. She started seeing a chiropractor who specializes in the cervical spine and an oncologist who practices traditional Chinese medicine. He recommended a course of herbal treatments and weekly acupuncture.

When she finally visited her surgeon, he was unwilling to operate because her symptoms had already improved 30 percent.

“We were really excited,” Switzer said. “I don’t want to go through another surgery unless I have no other options.”

Before she knew the complementary treatments would be effective, Switzer had already lined up consultations with a few of the top U.S. doctors performing spinal fusions. She went online to see how other patients fared after spinal fusion, and she visited university libraries to look up medical research.

It’s tough to make rational decisions when you’re facing a life-threatening problem, Switzer said. Drawing on support from her friends and family, and learning as much as possible about her options, helped Switzer get through.

“I think knowledge is the most important piece,” Switzer said. “If you understand what you’re up against, it makes making an objective decision easier.”