Single mother's life-saving stubbornness a lesson in self advocacy

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by JANET ST. JAMES

WFAA

Posted on February 17, 2012 at 1:09 AM

Updated Friday, Feb 17 at 1:09 AM

RICHARDSON - This 43-year-old single mother of three is grateful for a second chance at life. Grateful too, that she listened to her own body and brain.

Beneath Jodi Hulsey's bandanna is a startling sign of self advocacy.

"I have this nice crop circle," she said.

It's Hulsey's description of the perfect bald spot on top of her scalp. It's the result of radiation treatment, which she might not be getting now, had she believed the diagnosis of doctor after doctor.

It all began in January 2011, when Hulsey began experiencing severe nausea, headache and dizziness.

"Very suddenly one day, the whole world started spinning," Hulsey said. "And I mean just spinning like crazy. Never had anything like that happen in my life. So I went to the emergency room."

At Methodist Richardson Medical Center, Hulsey was given a CT scan and diagnosed with a sinus infection.

"They gave me an antibiotic and sent me on my way," she said.

That diagnosis came even though hospital medical records mention a "slightly prominent" "anatomic variant" in Hulsey's brain. The CT scan itself shows that "variant."

Other doctors, too, misdiagnosed Hulsey with vertigo and an inner-ear infection.

"Two ER's, three visits to the ENT, and two visits to my primary care," Hulsey recalled the number of trips to a doctor she took in 11 months.

Hulsey said, like most patients, she trusted that she would get better, despite feeling progressively worse. At the urging of family members, and her own conscience, she kept returning to doctors.

Because medical records aren't routinely or easily shared -- even with patients -- none of those doctors had access to the original brain scan, which showed the beginnings of a brain tumor.

Hulsey said the emergency room never followed up with her, or mentioned that there was anything even potentially out of the ordinary in her brain scan. She now wishes they had.

News 8 asked Hulsey to obtain the CT scan, which she had never seen. News 8 showed the scan to UT Southwestern radiation oncologist Dr. Kevin Choe, who is Hulsey's treating doctor.

He is not an expert in reading X-rays, but admits in hindsight, he can see potentially abnormal changes.

"I'm not surprised that it was not called as something significant, because a year ago, it was very non-specific and mild changes," he said.

"If we start flagging people for those sorts of mild changes," Choe continued, "we'd be flagging too many people and actually cause harm."

It took unbearable symptoms -- and Hulsey's own dogged pursuit for better answers -- to get the right diagnosis in November. By then, an MRI showed a walnut-sized brain tumor called an ependymoma attached to Hulsey's spinal column.

"Vomiting headache, nausea, dizziness," Hulsey said of her symptoms. "Literally, I'd get through the week and lay in bed with a wash cloth over my face, and not be able to move all day Saturday."

"When the tumor grows, it tends to block the fluid in the brain," Choe said. "And that causes increased pressure in the brain, which can lead to headaches, nausea, vomiting, dizziness, balancing problems."

Brain surgery followed on Nov. 21, 2011.

Hulsey is currently undergoing 30 sessions of radiation, to kill any microscopic fingers of the tumor that may have been left behind in the surgery.

"It's been a big lesson to me to learn that you have to advocate for yourself," Hulsey said. "I'm here by the grace of God, because my children need me."

E-mail jstjames@wfaa.com

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