Personal stories and experiences

[John_Mills]

Please use this Communty Blog to share your experiences and personal stories. These will be kept for others to read while ever this site is available. These experiences and stories may help others who are struggling to deal with the problems of living with Vasculitis now and in the future.

[Jim-Bornac]

This was done about ten years ago.

One of 20

By Tom Collins

[e-mail]

The weekend after Thanksgiving 1993, James J. Bornac’s family brought him some leftover turkey to eat from his hospital bed.

It wasn’t much of a feast, but the La Salle native finally had something to be thankful for; doctors had at last discovered what was wrong with his brain.

Over the previous five years, Bornac was crippled by savage headaches. He would get lost driving to work and wind up in a strange town. His mood swings grew so vicious that thinking about what he had to do that day could send him into an emotional tailspin.

Bornac and his wife, Rebecca, sensed the problem was not psychological but physical and begged his doctors to keep testing him for some ailment.

Angiograms, MRIs, EEGs and spinal taps revealed nothing. Finally, the Bornacs persuaded a neurologist to order a brain biopsy, a risky and invasive procedure requiring a surgeon to remove a piece of Bornac’s brain for analysis.

“When the neurosurgeon got in there, he said he’d never seen anything like that,” Bornac said. “He said just a touch of the veins in my brain would make them bleed.”

The diagnosis was granulomatous angiitis of the central nervous system, an extremely rare variation of vasculitis of the central nervous system. His disease is marked by headaches, confusion, seizures, brain hemorrhages and the loss of ability to reason.

Bornac learned he was one of just 20 known cases in the world, and that the mortality rate was extremely high.

“If it’s not diagnosed, it’s fatal,” he said. “Up until approximately 1988, it was a fatal disease and they could not diagnose it until after an autopsy. They didn’t think I’d make it to 40.”

In 2002, Bornac celebrated a very happy 40th birthday. He still is unable to work and requires a staggering diet of medication, which has created new health problems.

But Bornac is lucky to be alive, and it shows. Despite the threat of an early death, Bornac is cheerful and upbeat. He spends a good part of his day online with other VCNS sufferers, urging them to keep up their spirits.

Bornac left La Salle at age 23 to pursue a career in movie theater management. In 1990, he married Rebecca Goodman, the manager at a rival theater, and the couple later moved to Atlanta before settling in nearby Snellville, Ga.

Bornac had a long history of headaches but never pursued medical treatment, figuring he suffered from migraines. But as he inched toward his 30th birthday, the headaches became unbearable.

“I mean like a ‘hit your head against a brick wall to make it feel better’ headache,’” he said. He also began to experience seizures and disorienting lapses.

He visited doctors but was frustrated by the responses. Doctors treated him for depression or allergies, to no avail, or concluded his symptoms were psychosomatic.

“This is a disease where, when you get it, people think you’re crazy or something, because they don’t know anything about it,” Bornac said. “My wife finally convinced my neurologist that I was not acting right and that there was something wrong.

“And if it wasn’t for her convincing my neurologist of this, I’d have been a goner by now.”

The 1993 brain biopsy finally enabled doctors to diagnose him correctly, and to prescribe a dizzying regimen of drugs to stave off the symptoms.

Doctors first put him on steroids, including a powerful anti-inflammatory that induced osteoporosis, for which he now takes heavy doses of Vitamin D and calcium.

He also takes anti-seizure drugs, aspirin to break up blood clots in his legs (another byproduct of heavy medication), drugs to fend off vertigo, plus palliatives to keep ulcers from forming in his battered stomach.

An attempt to wean him off the anti-inflammatory nearly killed him. He suffered at least three brain hemorrhages during that period and had a weeks-long blackout during which his family told him he’d become deranged.

Even today, thinking too much can send him into a tizzy.

“Sometimes I’ll stand here in the kitchen and literally walk around in circles thinking about what I have to do next,” he said. “Because even the simple things in life are overwhelming.”

All of which has terrified his parents, Augie and Joan Bornac of La Salle.

“It’s been rough,” admitted Augie Bornac, who said he prays for his son many times a day. “They told him several times to make (funeral) arrangements.”

Bornac speaks to at least one of his parents every day and they visit him several times a year. Jim Bornac cannot travel; he has to stay close to his doctors at all times.

Support from his family is important because one of Bornac’s challenges is getting people to understand what he has.

“You just basically tell people there’s something wrong with your brain. It’s a rare disorder — headaches, you can’t think straight. But nobody gets it at all.”

[John_Mills Volunteer]

Hi Jim. You certainly have survived CNS. Thanks for sharing that!