Set Matt Free Of RSD
The following article appeared in The North Providence Breeze newspaper on Wednesday, May 28, 2008.
Faith, family, hope sustain NP man in daily pain
Matthew Irving needs help of others to afford treatment of last resort
By JANET KERLIN, Breeze Correspondent
NORTH PROVIDENCE - Matthew Irving suffers from a chronic pain condition that he never spoke of during his years of academic excellence at North Providence High School.
Before his graduation in 2005, Matthew was known for taking honors courses and traveling to national academic quizzes, using a wheelchair to get around since he could not tolerate the pain of standing.
As his Complex Regional Pain Syndrome has worsened, his cheerfulness has been replaced by a soft voice from a motionless body in his bed. And his natural aversion to talking about his suffering has changed out of necessity.
In recent years, his chronic pain condition has become so excruciating and debilitating that he leaves his house only for medical appointments. Jolts of pain travel up and down his spine, and he feels extreme burning or other extremely painful sensations from light touch, swallowing or moving. He has a constant headache, insomnia, and has exhausted every medication and treatment available in the United States.
Matthew has decided to pursue a risky medical treatment in Saarbrucken, Germany that will put him in an anesthetic-induced coma. The hope is that the five-day comatose infusion of the drug ketamine will break the pain cycle and put him in remission.
Matthew's friends and family are hoping to raise $75,000 for the travel, treatment, hospital stay, and follow- up ketamine infusions when he returns home, as well as the treatments so far that have not been covered by insurance through his father's employer.
"I believe in faith, family and friends. That's really how I get through my days," Matthew told The North Providence Breeze on Thursday, May 22. "They're always there for me if I ever need anything. Just knowing that helps me.
"I pray a lot. My mother and I pray the rosary. It just helps me get through my days.
"I really appreciate when people pray for me. We are trying to get to Germany, so financial help is really appreciated."
He says apologetically that he can't say much more. "My migraine is really up there."
Alongside Matthew for companionship and care giving is his mother, Nancy. She is standing by his decision to seek the treatment that is risky for its possibility of serious or fatal complications, but hopeful because it carries a chance for remission.
"In January of this year, he called the doctor and said he has no life, and all that he endures, he just can't continue," Nancy Irving said, her voice breaking with sobs.
"So they put him on a wait list. You have to have clearance from the cardiac doctor, an M.D., a psychologist."
There is no cure for CRPS, formerly known as Reflex Sympathetic Dystrophy, so treatment is aimed at relieving painful symptoms, according to the National Institute of Neurological Disorders and Stroke.
The trip to Germany would be the farthest the Irvings have traveled in search of relief. Matthew sees a doctor monthly in Boston, and physicians who specialize in RSD in New York and Philadelphia for ketamine treatments. Among Matthew's physicians is Dr. Robert Schwartzman, chairman of neurology at Drexel University College of Medicine in Philadelphia, who is a pioneer in the use of ketamine for CRPS/RSD. He refers patients who have exhausted all therapies to colleagues in Germany for the ketamine coma.
Matthew received a ketamine infusion in April in New York "but unfortunately he got no relief and he developed a few health problems. He had problems with a kidney and he had a seizure and they stopped the infusion," Nancy said.
Some of Matthew's ketamine treatments are covered by medical insurance and sometimes they are not, "depending on what it's for," she said. Her husband Russell is a computer programmer for the state, and despite his 18-year career, Rhode Island's deficit makes the Irvings fearful of losing health insurance with the threat of layoffs in the news.
Nancy Irving is putting her pride aside so that she can accept financial help. Over the past five years, the family has exhausted all means of payment for medical expenses, using credit cards and re-mortgaging their one-story home on Linwood Street.
To get on the active waiting list for Germany, Nancy was told she had to have passports, a minimum of $50,000, and a packed suitcase. Last week, she received the passports, after two CVS employees came to the family home to take Matthew's photo. Russell designed a Web site to help with the fund raising; setmattfreeofrsd.com went up on Mother's Day.
"Fire up your strength" is what another mother told Nancy Irving; she has been getting support from other families who have undergone the ketamine coma. The disease affects between 200,000 and 1.2 million people in the United States, according to the RSD Association.
Doctors don't know what causes the disease, which is characterized by intense pain out of proportion to an injury. In some cases the sympathetic nervous system plays an important role in sustaining the pain. Another theory is that CRPS is caused by a triggering of the immune response, according to the National Institute of Neurological Disorders and Stroke.
Matthew's symptoms began after a nerve was mistakenly cut during surgery on his foot in July of 2003 and the family was told RSD was "an ugly complication of surgery."
"It is truly his faith in God that has sustained him," said Nancy. She also believes he developed a determination from when he was studying tae kwon do, an activity he enjoyed with his younger brother, Daniel, now 20 and a sophomore at Providence College.
"(Tae kwon do) trains you with all your mind to stay determined with your goals, to stay strong. I never thought he would ever use it to fight this monster - that's what they call this."
The family draws strength from friends.
On a recent Sunday afternoon, Susan Bennett, a former high school teacher of Matthew's, stopped by to say hello. She and other teachers and administrators have been "phenomenal," Nancy said, and have helped to support students in holding fund-raisers. A faculty vs. hockey team game on May 16 raised $300; a karaoke night raised $400. A pasta supper is planned for this summer to raise funds. A sophomore girl passed the hat at a softball game and raised $50.
Bennett recalls good times on the high school LifeSmarts quiz team, when Matthew was an articulate and enthusiastic senior and the following year as assistant coach, traveling to nationals both years.
"He was the one who pushed them to study, prior to us going to San Francisco. He felt as though he was representing Rhode Island; he wanted to do the best he could do," Bennett said.
The family is also requesting donations in the bulletin of their church, Mary Mother of Mankind, where Matthew and Daniel were altar servers. Then Matthew attended Mass in a wheelchair, and then he dropped out of sight to the community.
Lisa Notarianni has known Matthew since they were 6 years old, and describes him as such a sweet friend that he came to her late father's wake in July in his wheelchair, "even though he was in pain and agony."
The 21-year-old has accumulated $500 for Matthew.
Lisa's father carried a guardian angel pin in his wallet, and she believes this helped him to get his miracle, a heart transplant. She has given the angel to Matthew.
"I know my father loved him. I wanted him to have it because maybe it will get him the miracle he needs."
Information is available at Setmattfreeofrsd.com. Donations can be sent to: Matthew Irving RSD Medical Fund, c/o Sovereign Bank, Att: Suzanne C. Hebert, 1025 Smith St., Providence, RI 02908.