From: http://www.rsds.org/electronic alert archive/Journal_07112008_112.html
Gambling on experimental treatment for pain
By Richard C. Dujardin
Matthew Irving, a 21-year-old North Providence man, is flying to Germany for experimental medical treatment for his pain condition. (Courtesy of Irving family)
NORTH PROVIDENCE — He’s only hours away now from embarking on a trip many hope will give him his life back and free him from excruciating pain.
For Matthew Irving, the 21-year-old former North Providence honor student, who has become the focus of so many prayers these days, tonight’s flight from Boston to Germany will be far from routine.
He has reached the point, family members say, where the pain racing up from the base of his spine has been relentless. He has become so sensitive to light, sound and touch, they say, that even the sound of light music is painful to his ears, requiring him to lie motionless in a darkened room.
Two days ago, Matthew’s mother, Nancy, was still reflecting on the generosity of the many people who have been donating and raising money to help her son undergo experimental treatments at a hospital in Germany that have helped others with a similar condition go back to living pain-free lives. But she received a disconcerting call from the neurologist who has been treating Matthew for the last two years.
Dr. Robert Schwartzman, of the Drexel University School of Medicine in Philadelphia, said that because of Matthew’s worsening condition, the family and the airline would need to work out a way to get Matthew to Germany on a stretcher — or if not a stretcher, a seat that would allow him to completely recline.
By the end of the day, she and her husband Russell resigned themselves to the trip costing far more than the $75,000 they thought. The flight alone, Mrs. Irving said, could cost $51,000, bringing the total to as much as $125,000.
“We’re still waiting for final confirmation from the airline,” said Matthew’s mother. “You just try to roll with the punches.”
Many individuals diagnosed with RSD/CRPS (Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome) aren’t sure how they got it.
But Matthew, whose pain has become so severe that he has only been able to speak in soft whispers, was always able to pinpoint the day: July 24, 2003. That’s the day that Matthew, an altar boy for eight years at Mary, Mother of Mankind, Church, and a karate enthusiast who had spent seven years attempting to master tae kwon do, went to Boston Children’s Hospital for minor surgery on his foot.
Immediately after surgery, he knew that there was something terribly wrong. Sharp pain traveled up his leg, and, as weeks went by, the pain shot up from his other leg as well, and then up to his arms and ultimately his whole body. By October, doctors were able to put a name to what he was experiencing, RSD/CRPS Type II. It results from major nerve damage — traced to the severing of a nerve during the operation on his foot.
Although the pain was excruciating, it did not take over his entire body for another two years, which meant that Matthew could continue classes at North Providence High School, where he had been a member of the Science Olympiad and Academic Decathlon.
His mother remembers the standing ovation that he got from fellow students on graduation night three years ago when he stepped from his wheelchair and walked several steps to accept his diploma.
She says her son took a definite turn for the worse six months ago.
Matthew wrote, “I experience pins and needles episodes from the waist up… “The ones in my face, neck and head are extremely intense and almost unbearable. These are brought on every time that I eat or drink.”
His parents say his pain is such that it will often take him three to four hours to fall asleep, and that when he does, it is only for brief naps. They say that while it was previously possible to interview their son — he struggled through one sentence a couple months ago — it is no longer possible because of his condition.
He shares a room with his 20-year-old brother, Daniel, and has a buzzer nearby to summon his mother if he needs her. She says even eating and drinking is painful for him now, and she tries to keep him nourished with “soft” foods such as yogurt or soft scrambled eggs. “He told me one thing that keeps him going is faith in God.”
That, and the belief that the experimental treatment in Germany will lead to a cure. The treatment is not allowed in this country, the parents say, because the FDA does not allow patients to be deliberately placed in comas for more than two days. The treatment in Saarbrueken, Germany, involves putting the patient in a coma for five to seven days, during which the body is filled with massive amount of ketamine in an attempt to “reboot” the body system.
Dr. Schwartzman has written that of the 41 patients he has sent to Germany, 14 came back pain free and have remained free for five years, while others have come back with their pain reduced.
In North Providence, towns-people have taken Matthew’s battle to heart. A large sign at the Getty gas station on Mineral Spring Avenue urges people to “Help Matthew” and to visit the Web site, www.setmattfreeofrsd.com.
Last week, the Recreation Department raised $1,800 for Matthew’s treatment from a swim meet and firefighters raised $1,115 last weekend selling hot dogs at Governor Notte Park.
Some $43,000 has been raised thus far and more is anticipated. Tomorrow, from 9 a.m. to 5 p.m., all proceeds from the mini-golf and pitch & putt courses at the Atlantic Gold Center at 754 Newport Ave., South Attleboro, will go toward Matthew’s Medical Fund, and Mary, Mother of Mankind, Church will hold a pasta dinner in support of Matthew from 5 to 8 p.m. Saturday, July 26, at the church hall.
Another big event is a concert at the high school football field planned by the North Providence Taxpayers Association on Aug. 24. Kenny Cicerone says bands from Rhode Island and Boston, celebrities, comedians and others have signed up, all for the purpose of helping Matthew.
Nancy Irving says the family has gotten e-mails and donations from the most unexpected places, including Ireland and Australia, and she was initially surprised by the “phenomenal number of people who have reached out with their hearts.”
But the more she thought about it, she said, she wasn’t so surprised because “there are more good people than bad people in this world.”
She said the family will attempt to keep people updated through daily reports on their Web site.
Donations may be sent to the Matthew Irving RSD Medical Fund, c/o Sovereign Bank, Attn: Suzanne Hebert, 1025 Smith St., Providence, RI 02908.