Woman to undergo experimental treatment
Posted by the Asbury Park Press on 08/29/07
BY ERIK LARSEN
COASTAL MONMOUTH BUREAU
OCEAN TOWNSHIP — Imagine that the sharp pain caused by anything from a stubbed toe to a surgeon’s scalpel never went away.
Welcome to Judy Hopkins’ life.
The 25-year-old West Allenhurst resident suffers from a nightmarish rare disorder called Reflex Sympathetic Dystrophy Syndrome, also known as Complex Regional Pain Syndrome, a chronic neurological disease that leaves its sufferers in constant pain following physical trauma or surgery.
Hopkins, once a dancer and high school basketball player, first experienced symptoms of RSD in 1998, at age 16, after undergoing surgery on her right foot to remove shards of broken glass she had stepped on while working as a lifeguard.
In the years that followed, operations to correct intestinal issues have left Judy Hopkins a weak, homebound insomniac, downing 25 to 30 prescribed pills daily while wearing a Fentanyl transdermal patch to manage what has become excruciating pain. She is cared for by her parents, Robert and Linda, with whom she lives.
After having exhausted all treatment options in the United States, Hopkins is at the top of a two-year national waiting list to travel to Germany for an experimental procedure so dangerous the U.S. Food and Drug Administration does not allow it here.
“Some people can go their entire lives and never know they have (the disease),” Judy Hopkins explained as she sat in her dining room one recent afternoon. “One of the scary things is that anything, from a minor to major trauma to the body, can trigger it. If you are lucky, you can get it into remission.”
That’s what Hopkins’ parents are praying for as they prepare to take her on what will be an exhausting and emotionally draining journey before the end of the year to undergo the experimental procedure in question, called a “Ketamine Coma,” at the Klinikum Saarbruecken in Saarbruecken, Germany.
Medically induced coma
Once there, Judy Hopkins will be put in a medically induced coma for five to seven days and administered dosages of up to 900 milligrams of ketamine, enough to cause brain damage, kill her, put her RSD into remission or do nothing at all.
Dr. Robert J. Schwartzman of Drexel University’s College of Medicine in Philadelphia, perhaps the leading RSD expert in the country, has advised Hopkins to put her affairs in order, her family said.
The hope is that the high doses of ketamine will reset her malfunctioning central nervous system, which for lack of a better term, is stuck in a kind of repeating loop, still firing pain receptors, unaware the body has long since healed from the trauma that first triggered the pain. If successful, the effects of the treatment should be immediate.
“One of the things they’re finding, it (the treatment) doesn’t last as long as they had anticipated, even if it puts you in remission, there’s no guarantee it will last,” Hopkins said. “The fact is, I’m now full-body RSD-CRPS-I, that’s the worst category. These things are unfortunately counting against me. It’s really a game of chance.”
But given the amount of pain — she has been unable to leave her house in recent months except for doctors’ appointments and relies on a cane to walk outdoors when she does — she believes this treatment is her last hope.
The cost of travel to Germany and the treatment itself, which is not covered by any insurance carrier, is estimated at between $35,000 and $50,000, and friends of the family have started raising money to offset expenses.
Traced to Civil War
Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association, established in 1984, said the disease was first identified in Civil War veterans.
“A neurologist in Philadelphia, Silas Weir Mitchell, was treating Union soldiers who were complaining of stabbing pains from injuries that had healed,” Broatch said. Mitchell first named the disease causalgia.
Given the limits of medical science, more than a century would pass before the pathology of the disease was better understood and treatment options explored. At the beginning of the 21st century, the origins of the disease remain a mystery to the extent that Judy Hopkins suffered with RSD for four years and saw multiple doctors before she was correctly diagnosed by a neurologist in August 2002.
“I wasn’t able to complete college,” she said. “After my second year, I had to have multiple surgeries. From that point on, my life really changed. I used to do things, I went to school, I went out clubbing, but I would come back to my room and cry all night . . .”
After her sophomore year of college, when she received the RSD diagnosis, her doctor and her parents told her it would be impractical for her to continue at college.
“It still baffles me that putting a sock on makes me cry,” Judy Hopkins said.
“You asked us how this affected our family — I can’t hug my daughter, I have to let her hug me,” Robert Hopkins said. “If you touch her left arm, she’ll go through the roof. That’s just one impact. I don’t want to hurt her.”
“I don’t find any comfort in dwelling on my misfortune,” Judy Hopkins said. “I’m very fortunate my parents have the money to cover my medical expenses. It’s become my line, when someone asks me how I’m doing, I’ll say: “Can’t complain.’ If someone wants to hug me or touch me, I would rather grind my teeth — I actually chipped my tooth once — than let them know they’re hurting me.”