Wendy Cook

Wendy Cook was diagnosed with neurofibromatosis as a child. As is common for Type 1 neurofibromatosis patients, Cook had many small tumors grow on various nerves throughout her life, but only one required surgery and none caused her significant pain.

Then in 2003 she found it difficult to sit due to pain on her right buttock, pain which radiated throughout her lower body down to her right foot. Finally, the pain drove her to see her hometown doctor in Monroe, Wisc.

Sitting in his office, Cook, a nurse, read her own MRI results and realized that what she had assumed was a small tumor was massive, located along her sciatic nerve and extending into her pelvis and rectum.

"I was sobbing," Cook recalls. "We had no idea that the tumor was so big or how long it had been there."

Given the extent of the tumor, Cook's doctor recommended she seek treatment at a larger medical facility. She chose Mayo Clinic in Rochester, where physicians have special expertise in treating neurofibromatosis patients with benign tumors like Cook's.

Mayo physicians used high-resolution magnetic resonance imaging (MRI) to determine that Cook's tumor was a rare dumbbell-shaped tumor that extended on both sides of the sciatic notch, where the sciatic nerve passes through the hipbone. The tumor location is difficult to reach and operate on without causing damage to the sciatic nerve, which controls leg movement. If the tumor arises from the nerve, surgery is futile. The images showed that the tumor was displacing the nerve but wasn't growing within it, good news for Cook.

She underwent surgery on April 17, 2003.

In an eight-hour operation, one surgeon entered from Cook's abdomen and one from her buttocks, meeting in the middle to delicately separate the tumor from the nerve. They were able to remove the entire tumor without damaging the nerve.

"When I woke up from surgery, the nurse said the doctors removed all of the tumor and I could move my legs," Cook says. "I was so amazed because, with this type of surgery, there's so many things that could go wrong."

"These are complex tumors," says Neurosurgeon Robert Spinner, one of Cook's doctors. "We were able to relieve Wendy Cook's pain because of the kind of team effort Mayo Clinic is known for: the radiologist's superb images predicted that we could safely remove the tumor and two surgeons, a colorectal surgeon and a neurosurgeon, worked together to remove it."

Cook returned to work six weeks after her surgery and resumed normal family life with her husband Rick and their 14-year-old daughter. The family enjoys snowmobiling, raising rabbits and training their black labs.

Cook remains symptom-free following the surgery. In addition, repeat MR exams show no tumor recurrence where the dumbbell tumor was removed. Cook's case was included in a recent report in Journal of Neurosurgery in which Mayo physicians described their experience treating five patients for dumbbell tumors.

As is common for patients with neurofibromatosis, Cook has had other small tumors at other sites, which doctors continue to monitor to determine if surgery will later be necessary.

For her, the small tumors are barely worth noting. Cook says she's thrilled to be free of the pain her large tumor was causing, and to be able to keep helping people as a nurse and focus on the other happy aspects of her life.

She also counts Mayo Clinic as her home away from home, a place where she's made friends, including the "honest and caring" physicians she trusts to continue to watch out for her health.