The Face and Life of Marfan Syndrome

"We now know in pain medicine that, especially during childhood, if pain is not well-treated you actually start changing the development of your nervous system," Zeltzer said.

When Rudes had too little pain medication after a surgery, his nerves kept up a constant firing of pain signals, which in turn resulted in a buildup of chemicals called neurotransmitters.

These chemicals slowly changed some of the nerves that feel pressure, warmth or cold, into nerves that carry pain signals, Zeltzer said.

"It ups the volume and the amount of traffic of pain signals from your organs, from your skin going to the nerve fibers in the spinal cord," she said.

Over time, the high volume of pain signals actually changed how his brain interpreted messages, creating haywire warnings.

At one point Rudes' system devolved so much that his brain could interpret even the slightest touch as excruciating pain.

An example of one such touch happened in 1995, when Rudes was lying in his hospital bed covered in bandages after an orthopedic surgery.

"I left his side to go get a soda down the hall," said Carol Rudes. "The only thing that was exposed were Mathew's toes."

While she was out, a pediatrician walked into the room.

"For some reason he touched Mathew's toes and that sent him into such pain his heart rate went up; he was screaming, alarms went off and they had to call the cardiologist," Carol said. He only calmed down after receiving an IV of Valium.

Rudes continued to develop intense pain after his recovery. Much of it is a blur to him, but his mother remembers watching her son suffer.

"He had seizures, he would go blind for short periods of time, and he would have just incredible pain and he was just forced to scream out," Carol said.

At one point Rudes became so desperate, he tried to commit suicide by swallowing a handful of blood thinners. The pain was so intense and the cause so elusive, Rudes' doctors thought he was crazy.

"It was just -- the manifestations of the pain syndrome were just unique, that there weren't any physical explanations," he said. "The easiest way to explain it was that you were faking it."

Rudes' mother is less forgiving of those who misjudged the situation.

"I remember having a big talk with the pain team and the psyche team. … I kept saying just give him a chance, I know this is not psychological, it's not," she said.

Finally, doctors found some explanations. For one, Rudes had needed his gall bladder out for nearly a year.

His doctors also did an MRI scan and discovered little pockets, or sacs, along his spine that were pooling and leaking spinal fluid. These pockets, called dural ecstasias, occasionally develop as a result of Marfan syndrome.

While there is no procedure to safely remove dural ecstasias, there are drugs to ease his pain: OxyContin, Ketamine, methadone, Valium and liquid morphine for serious breakthrough pain.

Victorious, yet Pain His Hardest Battle

"Sitting right before me is a 30-day pill box -- each day has a morning, afternoon, night container of around 10 or so pills," Rudes said. "That's enough to kill a whole middle school."

Rudes said he feels as though he emerged from a dark mist, now able and ready to play what cards fate has dealt him.

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