FWD: RSD World News-Woman Tries to Raise Money For Her Treatment

RSD In the News : FWD: RSD World News-Woman Tries to Raise Money For Her Treatment
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From: byrd45 (Original Message) Sent: 8/18/2005 8:03 AM
Taken from the Coatesville Ledger
http://www.zwire.com/site/news.cfm?newsid=14165874&BRD=2245&PAG=461&dept_id=452539&rfi=6

"Sometimes it's like a butcher knife shoots through your head," she
said. "It's like a steel knife and it feels like the point of the
knife is against my eyeballs."
The severe burning pain that Medeiros, a 1983 graduate of Coatesville
Area Senior High School, experiences is just one of the symptoms of a
disorder known as Reflex Sympathetic Dystrophy Syndrome (RSD or RSDS)
or Complex Regional Pain Syndrome (CRPS).
Other symptoms include muscle spasms, tingling, numbness, excessive
sweating, tissue swelling, extreme sensitivity to touch and
"pathological changes in bone and skin," according to the Reflexive
Sympathetic Dystrophy Syndrome Web site, www.rsdsa.org.
"My hair is starting to fall out and the skin is beginning to peel on
my feet," said Medeiros, who lives in East Fallowfield with her
boyfriend, Brad Sylvester, 41, and their daughter, Kyra Sylvester, 18,
a 2004 graduate of Coatesville Area Senior High School. "I don't sleep
hardly ever. The burning keeps me awake. I have to sleep with ice
packs on my legs."
"Overall, it's pretty hard to watch, her going through all this," said
Sylvester. "There's been nights where she's in pain and I can't do
anything."
According to Dr. Philip Getson of Marlton, N.J. who diagnosed Kristin
Medeiros and has been treating her, 10 million people in the U.S. have
been diagnosed with the disorder and another 10 million go
undiagnosed. "There's probably five times that number where
fibromyalgia has been diagnosed," he said.
He explained the disorder "comes from a malfunctioning of nervous
system that allows people to sense hot, cold...or their sympathetic
systems." Or in other words, he said, it's "when the sensory system
goes haywire.
"It always follows some kind of accident or surgery (usually after an
accident)," he added.
In Kristin Medeiros' case, it was a crash near West Chester in which
she was involved. In March of 2001, she was working as a delivery
truck driver (she asked that the company not be named since she is in
litigation against the company over workman's compensation issues)
when another delivery truck driver rear-ended the truck she was
driving. "I was sitting still in truck. I had stopped to make a left
turn when another driver slammed into the back of the truck," she said.
In the process, she hurt her lower and middle back and neck. She did
return to work, but only for a few months. Since September 2001, she
has been out of work.
From there began a long-drawn out process of being passed off from one
doctor to the next that would continue for the next six months. In
all, Kristin Medeiros saw about 30 doctors, she said. Only three or
four indicated that it might be RSD, she said. "A lot of doctors see
workman's compensation and they think you're lying," she said.
She said she would look forward to each appointment thinking that
finally "this would be the one." But time after time, it wasn't.
Finally on May 16, 2002, a doctor that her father, Raymond Medeiros of
Franklinville, N.J. recommended, a Dr. David Zalut, chief of medical
surgery at Vorhees Hospital, referred her to Getson. On Dec. 11, 2002,
after having her tested on a thermogram machine, Getson diagnosed her
with RSD.
The disorder is incurable. However, treatments are available.
Conventional treatments, according to Getson, include, but are not
limited to the following: physical and occupational therapy, oral
medication, hospital-based therapy, epidurals, spinal card
infiltrations, implantable pumps and most often ketamine therapy.
Once used as an operating anesthetic, ketamine has since been
discovered by researchers to treat patients with RSD, he explained.
One of the drawbacks, though, in order for the drug to be effective,
it has to be used in high quantities, and when given in large doses,
it makes people psychotic.
"So then they (doctors) said, 'Let's find a way to do this without
that happening,'" said Getson. As a result, in a German hospital,
doctors discovered they could put patients into a drug-induced coma to
give the higher dosage of ketamine.
This, in turn, led to a problem with the Federal Drug Administration
in this country, he explained. "They said they wouldn't allow people
to be put into a drug-induced coma," said Getson.
But a concession was made: Hahnemann Hospital in Philadelphia and
Cooper Hospital in N.J. were allowed to use hospital-based infusions
of ketamine in smaller doses to treat patients over a five-day period.
So far, they have treated 60 patients in the last 18 months.
"Eighty-nine to 90 percent of the people have gotten better," said Getson.
Kristin Medeiros, however, wasn't allowed to have the treatment.
According to Getson, there were two reasons she couldn't have the
treatment: "1. Because insurance company flat out refused to pay and
2. Because her insurance company flat out refused to pay."
"They tried to get me in as an in-patient and they denied that too,"
said Kristin Medeiros. She said she even went to state Rep. Art
Hershey, to see if he could help, and has since contacted a law firm
in Philadelphia to represent her.
"Obviously in a perfect world they would pay for you," said Getson.
That said, he said the difference between the hospital-based infusions
here in the U.S. and the treatments in Germany is "apples and oranges."
"You get it in huge doses, you're getting better," he said.
For that reason, Kristin Medeiros is now looking to get the treatment
done in Germany. This past Monday, she was scheduled to have seen Dr.
Robert J. Schwartzman, professor and Chairman of Neurology at the MCP
Hahnemann School of Medicine in Philadelphia, and the person who
recommends patients for treatment in Germany.
Last week she said the earliest she probably would be able to go would
be sometime this summer.
The only catch is that the treatment costs $25,000: money that neither
she nor her boyfriend, who is a mason for a local company, have. While
she hasn't asked for help, her stepmother, Myra Medeiros, has: last
month she sent a letter to the Coatesville Ledger asking the community
to help. To that end, an account has been set up at Citadel Federal
Credit Union in Thorndale to help with the expenses.
In a telephone interview last week, Myra Medeiros said her
stepdaughter was a very proud person and it wasn't easy for her to ask
for help from other people. She said her hope in writing the letter
was to make people more aware of RSD and also hopefully be able to
support her stepdaughter.
"We are standing by her a 100 percent," said Myra Medeiros of her and
her husband, Raymond Medeiros. "She's been a real trooper with this
and has tried her utmost to take care of her family responsibilities,"
said Myra Medeiros. "We're just hoping to see the light at the end of
the tunnel with this procedure and would appreciate any kind of support."
As for the treatment itself, Getson said the key is that patients have
to follow up with outpatient infusion of ketamine after the treatment
in Germany.
"Everybody who went to Germany and didn't get follow up went back into
the same situation," he said. He noted it was sort of like the movie
"Awakenings," in which Robin Williams was a doctor who was treating
patients with sort of like in Awakenings
Asked if the treatment was dangerous, he said out of 20 people that
have gone to Germany that have been recommended by Schwartzmann, none
had a problem with the treatment itself. "One returned pain free and
17 to 19 with varying degrees of problems," he said.
He said yes, it could be considered dangerous in that a person is
having their body put into a coma for several days. However, he said
most people with RSD already lose so much of their lives anyway that
to them, it is no loss.
Kristin Medeiros admitted she was worried about the treatment. "But I
understand if it doesn't get done, I could be way worse," she said.
"We're willing to give anything a try," said Kyra Sylvester.


Contributions can be sent to the Kristin Medeiros Medical Fund, c/o
Citadel Federal Credit Union, P.O. Box 72147, Thorndale, PA 19372. To
learn more about RSD, visit either www.rsdsa.org or www.rsdhope.org.