Tuesday, January 31, 2006

Study finds nerve damage in previously mysterious chronic pain syndrome

Contact: Sue McGreevey
smcgreevey@partners.org
617-724-2764
Massachusetts General Hospital


Study finds nerve damage in previously mysterious chronic pain syndrome

Reduction in small-fiber nerves may underlie complex regional pain syndrome-I (reflex sympathetic dystrophy)

Researchers at Massachusetts General Hospital (MGH) have found the first evidence of a physical abnormality underlying the chronic pain condition called reflex sympathetic dystrophy or complex regional pain syndrome-I (CRPS-I). In the February issue of the journal Pain, they describe finding that skin affected by CRPS-I pain appears to have lost some small-fiber nerve endings, a change characteristic of other neuropathic pain syndromes.

"This sort of small-fiber degeneration has been found in every nerve pain condition ever studied, including postherpetic neuralgia and neuropathies associated with diabetes and HIV infection," says Anne Louise Oaklander, MD, PhD, director of the MGH Nerve Injury Unit, who led the study. "The nerve damage in those conditions has been much more severe, which may be why it's been so hard to detect CRPS-I-related nerve damage."

Complex regional pain syndrome is the current name for a baffling condition first described in the 19th century in which some patients are left with severe chronic pain and other symptoms – swelling, excess sweating, change in skin color and temperature – after what may be a fairly minor injury. The fact that patients' pain severity is out of proportion to the original injury is a hallmark of the syndrome, and has led many to doubt whether patients' symptoms are caused by physical damage or by a psychological disorder. Pain not associated with a known nerve injury has been called CRPS-I, while symptoms following damage to a major nerve has been called CRPS-II.

Because small-fiber nerve endings transmit pain messages and control skin color and temperature and because damage to those fibers is associated with other painful disorders, the MGH research team hypothesized that those fibers might also be involved with CRPS-I. To investigate their theory they studied 18 CRPS-I patients and 7 control patients with similar chronic symptoms known to be caused by arthritis. Small skin biopsies were taken under anesthesia from the most painful area, from a pain-free area on the same limb and from a corresponding unaffected area on the other side of the body.

The skin biopsies showed that, the density of small-fiber nerve endings in CRPS-I patients was reduced from 25 to 30 percent in the affected areas compared with unaffected areas. No nerve losses were seen in samples from the control participants, suggesting that the damage was specific to CRPS-I, not to pain in general. Tests of sensory function performed in the same areas found that a light touch or slight heat was more likely to be perceived as painful in the affected areas of CRPS-I patients than in the unaffected areas, also indicating abnormal neural function.

"The fact that CRPS-I now has an identified cause takes it out of the realm of so-called 'psychosomatic illness.' One of the great frustrations facing CRPS-I patients has been the lack of an explanation for their symptoms. Many people are skeptical of their motivations, and some physicians are reluctant to prescribe pain medications when the cause of pain is unknown," says Oaklander. "Our results suggest that CRPS-I patients should be evaluated by neurologists who specialize in nerve injury and be treated with medications or procedures that have proven effective for other nerve-injury pain syndromes." She adds that the next research steps should investigate why some people are left with CRPS after injuries that do not cause long-term problems for most patients, determine the best way of diagnosing the syndrome and evaluate potential treatments.

"Investigations that identify the causes of disease are only possible if patients are willing to come to the lab and allow researchers to study them," she adds. "We are tremendously grateful to these CRPS patients, whose willingness to let us study them – despite their chronic pain – allowed us to make an important step in helping those who suffer from this condition." Oaklander is an assistant professor of Anaesthesia and Neurology at Harvard Medical School.


###


The study was supported by grants from The Mayday Fund, the National Institute for Neurological Disorders and Stroke, and the American Federation for Aging Research. Coauthors are Julia Rissmiller, Lisa Gelman, Li Zheng, MD, PhD; Yuchiao Chang, PhD; and Ralph Gott, all of the MGH.

Massachusetts General Hospital, established in 1811, is the original and largest teaching hospital of Harvard Medical School. The MGH conducts the largest hospital-based research program in the United States, with an annual research budget of nearly $500 million and major research centers in AIDS, cardiovascular research, cancer, cutaneous biology, medical imaging, neurodegenerative disorders, transplantation biology and photomedicine. In 1994, MGH and Brigham and Women's Hospital joined to form Partners HealthCare System, an integrated health care delivery system comprising the two academic medical centers, specialty and community hospitals, a network of physician groups, and nonacute and home health services.



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Monday, January 30, 2006

Disabled mom, 3 children face bleak holiday


The Mercury, originally uploaded by rsdscrpsnews.

Melanie was once employed full time, involved in her children’s school and a soccer mom on weekends. Now she’s disabled from a neurological disease called reflex sympathetic dystrophy syndrome.

She currently takes 28 medications a day, including Alzheimer’s medication.

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"Financially, it’s very devastating," Melanie said. She has days that she just can’t get out of bed.

The disease starts in the bones and spreads to the muscles. As it spreads, it leaves osteoporosis behind.

"It’s similar to MS in that it’s progressive and it spreads," Melanie said.

She has three children, ages 16, 12 and 3. They try to understand her condition, but they remember mom the way she was before the disease.

"It’s a disease that’s very devastating and it’s led my children to be very angry and very sad because there’s no cure," Melanie said.

Last February, she was fitted for a wheelchair. They switched her medication, and over the summer Melanie was able to walk again. But as the cold sets in, she again loses her ability walk.

"The weather plays a huge part in it," Melanie said.

Melanie said she’s very grateful that she will be assisted through The Mercury’s Operation Holiday program.

"Birthdays you can kind of blink through and get by with one present, but with Christmas you can’t do that," Melanie said.

"With the little one, she knows what Santa Claus is. You have to have Christmas," she added.

Doctors say the only hope for Melanie is a spinal treatment that reboots the nervous system and sympathetic nervous system.

In the United States, it has been performed at only two hospitals.

"I tried once to get approved for it and my insurance company turned it down, saying it was medically unnecessary," Melanie said.

She’s not giving up though. Melanie is scheduled to see a specialist that she hopes will help her convince the insurance company that she needs the $50,000 surgery.

It is to offer hope to families like Melanie’s that The Mercury began its Operation Holiday tradition 14 years ago.

Last year, Operation Holiday, a nonprofit foundation administered by The Mercury, served 171 families and 475 children. The mission of Operation Holiday is to provide some Christmas happiness for the children of families who may be going through tough times.

The program has served thousands of families in the Pottstown area since it was established.

Operation Holiday recipients are screened and referred to the program by a dozen social service agencies in the Pottstown area. None of the money goes to agency programs or to people who live outside the area.

This year, The Mercury is seeking to help more than 100 families who are struggling through tough economic times or dealing with the financially devastating effects of illness or misfortune.

But this program is not possible without the assistance of Mercury readers. You can help bring the joy of the season to your neighbors and their children by making a contribution, however large or small, to Operation Holiday.

All donations go directly to assist those referred to the program. There is no overhead, as volunteers coordinate distribution of the gift certificates and buy, pack and deliver the groceries.

The names of all those who contribute to Operation Holiday, except those who ask to remain anonymous, will be published in The Mercury between now and Dec. 25.

Operation Holiday contributions may be dropped off at The Mercury’s office at Hanover and King streets in Pottstown or mailed to The Mercury, P.O. Box 484, Pottstown, PA 19464.Checks can be made payable to "Operation Holiday."


Click Here for Original Article Online

RARE DISORDER: 'Help us relieve our condition'


Peterboroughtoday.co.uk, originally uploaded by rsdscrpsnews.

RARE DISORDER: 'Help us relieve our condition'

A SUFFERER of a chronic pain disorder is backing plans for a medical conference on her condition.

Kelly Green (24), from Turves, near Whittlesey, suffers from Complex Regional Pain Syndrome (CRPS), a severe illness which causes her immense suffering.

CRPS, formerly known as Reflex Sympathetic Dystrophy, normally follows an injury, and in Kelly's case resulted from a fall down the stairs.

The condition causes intense pain out of proportion to the severity of the injury, which, over time, gets worse instead of better.

Now Kelly is supporting fellow sufferer Trudy Lapinskis, from Whittlesey, as she plans a national conference on the condition for medical professionals.

Kelly was diagnosed with CRPS in 2003 and is still struggling to come to terms with the condition.

She said: "I have been diagnosed with depression and I have been suicidal. My friend helps to care for me during the day now, because I get so low."

She explained that, after banging her elbow, it bruised and swelled so badly that she went to casualty.

She said: "They couldn't tell if I had cracked it because there was too much swelling."

Kelly was sent home, but soon went to see her doctor about the constant pain.

Fortunately, she is registered with the same GP who had treated Trudy, and he immediately recognised the symptoms.

Kelly now takes up to 30 painkillers a day and has regular injections to stimulate the nerves in her arm.

Clare Osler (21) has taken on the role of carer for her best friend and moved into her March Road home.

She said: "I work in the evenings so I am around during the day for Kelly.

"We went to school together. Before she was diagnosed, she wanted to be a PE teacher and she played football for Leicester ladies' team. Now, she can't do anything like that.

Most of the time she doesn't even go out. Her life has completely changed."

Trudy, who has been supporting Kelly since her diagnosis, wants patients to get the treatment they need more quickly and thinks the medical profession needs to learn more about CRPS.

Trudy lost part of her left leg to the condition, after developing complications following an infection, and feels her foot could have been saved if her condition had been diagnosed sooner.

She said: "I definitely wouldn't be in this situation now.

"I am trying to get Dr Robert Schwartzman, from America, to come to the conference because he is the best specialist on the condition in the world. I have met him a number of times and I think he could really help us."
16 December 2005


Click Here For Original Article Online

Mandrell returns to Ashland City to start 2006


Louise Mandrell, originally uploaded by rsdscrpsnews.

Mandrell returns to Ashland City to start 2006

Sells theater in Pigeon Forge

By Gary Burton
Times editor

A country music entertainer will be leaving her theater in Pigeon Forge later this month to return home to Ashland City.

And, she said she can’t wait to get back to Ashland City.

“My husband and I can’t think of a better place to call home,” said Louise Mandrell, sister of Barbara Mandrell. “It’s going to feel great to be back.”

Mandrell and her husband, John Haywood, moved to their home on the southern end of Ashland City more than 12 years ago, but she hasn’t spent much time here.

She has been performing several nights a week at her Louise Mandrell Theater in the Smoky Mountains for more than eight years, but that comes to an end on New Years Eve.

She performs her last show that night before returning to Cheatham County.

The theater was sold earlier this year and the new owners allowed her to stay through the end of the year.

“I always tried to get home in Ashland City about once a week,” she said. “But it will be nice to be back home for good.”

She plans on continuing her music career in the Nashville area in some form of entertainment.

One reason for her decision to leave Pigeon Forge was her husband’s health.

“John has (reflex sympathetic dystrophy syndrome) and I felt I needed to be closer to him more often,” she said.

RSD affects the body’s nervous system. Mandrell said she took her husband to Germany for treatment and that he is improving.

“It’s in remission now,” she said. “But he still suffers from some of the side effects.”

Recent rumors around Ashland City regarding the sale of her Cheatham County home as a site for a proposed Dollywood theme park are just that she said - rumors.

“That’s not going to happen,” she said. “My husband and I have gotten a laugh at all the talk about it, but we are not selling our property for it to become a new Dollywood.”

Many people driving south on Highway 12 toward Nashville notice the Mandrell property because of the large cross on the hill overlooking her home.

“My husband put that cross on the hill as a gift for me,” she said. “It’s helped complete our home.”

Once she returns in January, Mandrell said she looks forward to meeting new local people and seeing old friends as well.

“I love it when people come up to me in stores or just walking down the street,” she said. “If anyone sees me around town, please come up and say hello. I love the Ashland City community.”


Click Here For Original Article Online

Friday, January 27, 2006

Couple wins suit against Wal-Mart


Tallahassee, originally uploaded by rsdscrpsnews.

Couple wins suit against Wal-Mart
Jury orders retail giant to pay $1.4M

By Juana Jordan
DEMOCRAT STAFF WRITER

A Douglas, Ga., couple won a round in court against the world's largest retailer.

A Tallahassee jury of four women and two men awarded Larry and Judy Boggs nearly $1.4 million in a personal injury lawsuit against Wal-Mart Stores for an injury Larry Boggs suffered at the Wal-Mart SuperCenter on Thomasville Road

"I think the jury did an excellent job," said Larry Boggs from his home Wednesday. "But this really didn't have to go that far."

An attorney representing Wal-Mart would not comment on the case. The verdict was handed down Jan. 20.

According to Boggs, a Wal-Mart employee at the store struck his lower left leg with an electric pallet jack while he stood on the loading dock. Boggs, an independent truck driver, was delivering pet food for a private contractor to the store on Dec. 21, 2003.

"Wal-Mart promised within 24 hours after the accident to myself and to my wife that we wouldn't have to worry about anything," said Boggs, who said he sustained a permanent injury to his ankle.

But the store failed to keep its promise, he said. That's why he hired a lawyer. Jon D. Caminez and Ian Brown with Caminez, Brown & Hardee in Monticello represented Boggs.

Larry Matthews and Tricia Stafford at Bozeman, Jenkins & Matthews in Pensacola represented Wal-Mart.

"They didn't take care of anything," said Boggs, who has been diagnosed with reflex sympathetic dystrophy, a neurological disease marked by burning pain, stiffness and swelling. He now wears a brace on his left leg.

In court, Wal-Mart argued against Boggs having RSD. The judge dismissed the claim, according to Caminez.

Boggs was awarded $94,493.26 in the case heard before Circuit Judge Janet E. Ferris. The jury also awarded him $402,000 for future economic losses and $800,000 for pain and suffering. Judy Boggs was awarded $100,000 for the loss of her husband's services.

"We're satisfied that justice was done," said Jon Caminez.

But that doesn't mean the case is over, he said. No final judgment has been made. Wal-Mart can still move for a new trial. And it could still appeal, if motions presented are denied.

Contact Reporter Juana Jordan at (850) 599-2321 or jrjordan@tallahassee.com.

Originally published January 26, 2006


Original Article @ http://www.tallahassee.com/apps/pbcs.dll/article?AID=/20060126/BUSINESS/601260327/1003

Wednesday, January 25, 2006

CMMC hires new doctor


Daniel R. Lalonde, M.D., originally uploaded by rsdscrpsnews.

CMMC hires new doctor

Daniel R. Lalonde, M.D., a fellowship trained interventional pain management specialist, has been appointed to the Central Maine Medical Center Medical Staff. He is the first specialist of his type in the area. He has opened the Central Maine Pain and Headache Center, which is part of Central Maine Neurology.

He specializes in the evaluation and management of pain and headache disorders, including: chronic pain from failed back or neck surgery; reflex sympathetic dystrophy and sciatica; peripheral neuropathy; complex migraine and chronic headache; and facial pain.

A Lewiston native, Mr. Lalonde graduated from Bates College and earned his medical degree at the University of Texas Health Science Center at San Antonio.

After completing an internship with the Department of Medicine at Maine Medical Center in Portland, he served a residency in neurology at the University of Texas Medical Branch in Galveston, Texas. During the final year of his residency he served as chief resident.

Prior to returning to the Lewiston-Auburn area, LaLonde completed a pain management fellowship with the Department of Anesthesiology at Henry Ford Hospital in Detroit. He also served a cerebrovascular fellowship at the University of Texas Health Science Center's Division of Neurology.

He is practicing from the offices of Central Maine Neurology at 287 Main Street Plaza, Suite 404, in Lewiston. The practice can be contacted at 795-2927 or 1-800-308-0460.


Original Article @ http://www.monumentnews.com/2006/furthermore/105.shtml

Monday, January 23, 2006

WILL OF IRON


Mirror.co.uk, originally uploaded by rsdscrpsnews.

19 January 2006
WILL OF IRON
JEFF WINS £1.5M 4 YEARS AFTER CRIPPLING BLAST
By Clinton Manning

FORMER foundry worker Jeff Smalley has won almost £1.5million compensation after a horror accident - but he would give back every penny to hold his wife again.

The 62-year-old has to have his left arm amputated after an explosion at work. The tragedy struck 25 years after another accident led to him losing his right arm.

He said: "It's a lot of money but I'd give it all back in an instant if I could have my arms back."

His wife Linda said the worst thing was not being able to have a cuddle with her husband.

"We always used to hold hands when we went out for a walk," she said. "It's really awful not being able to put your arms around one another."

Jeff was working for James Maude & Co in Mansfield, Notts, when a sandblasting machine exploded in November 2001.

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He was blown off his feet, broke his leg and ripped his left shoulder apart. Doctors tried surgery to repair the damage but it didn't work. Jeff developed chronic regional pain syndrome which meant his arm and fingers are hyper sensitive. He is due to have his left arm amputated next week. "He's in that much pain the operation will be a blessed relief in many ways," said Linda, who quit her job at Asda to look after Jeff.

"He can't use it and he's taking about 16 tablets a day and he has morphine patches which he puts under his arm. Some days he's so drugged up he doesn't know where he is or - if he's lucky - he just sleeps."

Losing the use of his arms has also affected Jeff's balance - but he hasn't lost his sense of humour. He says: "I've fallen down twice. Once I broke my nose and split my head open so badly it needed 10 stitches.

"I can't put my hands out to break the fall so the first thing that hits the floor is my hooter.

"I looked as if I'd got a tomato stuck on the end of it." For Jeff the pain is made worse by not being able to play with his four grandchildren. After his first accident in 1980, he taught himself to paint with his left hand and to ride a mountain bike, cycling 200 miles a week to keep fit.

And shortly before the accident he started taking the eldest of his four grandchildren out for a ride. He said: "The eldest, Nathan, started to come out with me at weekends. I was looking forward to getting all of them out on the bikes.

"But now I can't cycle anymore and I've put on about three stone." His painting, too, will be impossible after next week's surgery.

In Jeff's first accident, in 1980, he dislocated his elbow and shoulder in a fall. Although a relatively minor injury he developed the infection CRPS. His arm was amputated five years later and he settled out of court with the company for £36,000.

Although the firm - which has since gone bust - admitted liability for the blast it took a four-year fight by the Amicus trade union and its legal firm Thompsons to win the insurance pay-out. "The union's been absolutely brilliant," said Jeff, "and Peter Magee at Thompsons. I don't know what we'd have done without their help."

Amicus legal services director Georgina Hirsch said: "This is an absolutely tragic case.

"No amount of money will ever make up for Mr Smalley's loss. But the outcome highlights the support trades unions can give to members injured at work."

'No amount of money can make up for this loss


Original Article @ http://www.mirror.co.uk/news/tm_objectid=16601147&method=full&siteid=94762&headline=mirror-works--will-of-iron--name_page.html

Sunday, January 22, 2006

Woman left disabled by infection slams hospital

Woman left disabled by infection slams hospital

A WOMAN from Sawbridgeworth says she has been left partly disabled after contracting an infection following a routine operation.

Now Marion Anglin and ex-husband, Colin, say they want Harlow's Princess Alexandra Hospital to accept liability for the permanent damage done to her health.

Eight months since the operation on her hand, to replace a joint affected by arthritis, the couple say they consider an investigation - whose report they only received last week - inadequate.

Mrs Anglin, 56, now suffers from a condition known as reflex sympathetic dystrophy, brought on by the infection, which has caused osteoporosis to develop in her arm. She is forced to take painkillers every four hours.

The condition has left her barely able to write, let alone enjoy any of her hobbies, which formerly included dressmaking and cooking. She is also unable to work.

"I feel quite depressed and I get quite tearful about it sometimes," she said. "It gets you down and wears you out, being in pain all the time; it really is quite debilitating."

Although she thinks the surgical procedure itself went well, it has been totally undermined by the bug. She said cleanliness could have been better on the ward where she believed she picked up the bacterial infection and thought staff should be screened to ensure germs did not get carried in.

"I didn't make the complaint because I wanted any compensation, I just feel this sort of thing shouldn't happen when you go into hospital," added the Meadows resident.

Mr Anglin has written to the Prime Minister, Health Secretary Patricia Hewitt and Sawbridgeworth's MP Mark Prisk to highlight her plight.

A spokesman for PAH said it was sorry Mr and Mrs Anglin were dissatisfied with its response, but it treated all complaints seriously and tried to ensure a thorough investigation. It apologised "unreservedly" for the delayed reply, blaming it on time taken to interview those who treated her.

He said the infection was a very rare strain of staphylococcus, adding Mrs Anglin's consultant had never come across a case following surgery before.


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Woman regains Medicaid lifeline


Sun-Herald, originally uploaded by rsdscrpsnews.

12/22/05

Woman regains Medicaid lifeline

Medically needy program reinstated

Shirley Meggs received a notice earlier this month declaring that she was no longer eligible for Medicaid health insurance coverage. The notice made her believe she would die soon, without her medication, in waves of pain and convulsions.

But the Florida Department of Children and Families, which determines the eligibility of Medicaid beneficiaries, reversed itself Wednesday. Without explanation, the DCF told Meggs she was eligible after all.

Meggs, 51, calls it a "miracle."

She said she'd made numerous calls to DCF and Medicaid officials, state senators and even the president of the United States.

"Nobody gave a darn," she said. "They just passed the buck."

The reinstatement came a day after a Sun reporter made two phone calls and an e-mail inquiry to a federal Medicaid services district headquarters in Atlanta, Ga., and to the DCF in Tallahassee.

Meggs said she believes she was being dropped from the Medicaid program by bureaucrats working to reduce Medicaid rolls because the U.S. government is "flat broke."

The eligibility snafu is just one of several glitches in Meggs' Medicaid coverage that have complicated her health battle.

Her illnesses include diabetes, hypoglycemia, herniated discs in her neck and lower back and a malformation in her brain, she said.

Worst of all is Reflex Sympathetic Dystrophy, she said. It set in after she fell on a sidewalk outside a Port Charlotte shopping plaza in 1999. It got worse after car accidents in 2001 and 2004.

The cause of RSD is unknown. Typically, it sets in after an injury, trauma or surgery. Other causes include pressure on a nerve, infection, cancer, neck disorders, stroke or heart attack.

These conditions can cause pain, which sets off an unconscious reflex. Patients experience burning pain, stiffness, swelling and discoloration of the hand.

In Meggs' case, seizures have also set in.

"The pain is so exhausting, it's awful," she said.

Last June, Medicaid notified her it would no longer cover the cost of her prescription for Topamax, a treatment for RSD. Topamax had been placed on a list of expensive medications that the Legislature cut from the Medicaid program in 2004.

The legislation, however, included an appeal process to allow patients and their doctors to request the drugs be covered if medically necessary. Meggs succeeded in getting her coverage for Topamax reinstated.

The process took three months. Meanwhile, her seizures, which Topamax helps control, intensified. Now, even with Topamax, seizures still occur, she said.

Meggs also complained that she's had difficulty finding specialists in Charlotte County who accept Medicaid patients. She's been referred to doctors as far away as Cape Coral and Tampa, but they turned out to be "quacks," she said.

One misdiagnosed her with end-stage liver failure, and the other had no "light box" to read her X-ray and MRI photos, she said.

"He looked at them in a dark room," she said. "He couldn't see a thing."

"It sounds like she got caught in one of these bureaucratic nightmares," said Paige Kreegel, a physician who is also a state representative from Punta Gorda.

Kreegel said his legislative office occasionally gets similar calls.

"Often, we call around and the coverage gets reinstated, and nobody explains why or takes the blame," Kreegel said.

Low-income patients sometimes "fall through the cracks," said Dr. John Rioux, a prominent member of the Charlotte County Medical Society.

Unless people work for a large company, they probably can't afford their own insurance. And doctors who have enough private-pay patients often shun accepting Medicaid patients, he said.

"Usually, the front office staff is directed to say 'no,'" Rioux said.

Physicians are more apt to make exceptions if a Medicaid patient is referred to them by a fellow doctor, he said.

The Legislature has been working to rein in spiraling Medicaid costs.

Last year, Kreegel supported legislation that limited Medicaid's prescription drug coverage. The intent was to discourage people from ordering the most expensive, latest drugs when less expensive standards would serve, he said.

Kreegel also provided input on legislation passed in a special session earlier this month to "privatize" Medicaid in a pilot program in Dade and Broward counties. Patients will be asked to select a private health-maintenance organization.

Kreegel said he strongly supports limiting the program to two counties until the Legislature can review how well the patients were served.

Many of Medicaid's shortfalls can be explained by the way such a bureaucracy is formed -- "by committee," Kreegel said.

"A camel is a horse formed by a committee," he quipped.

Meggs contacted the Sun this week, desperate. She was out of medications that cost thousands of dollars each month. The pain and seizures were increasing.

"I know one thing, I'm ready to give up, and I'm not the kind of person that gives up," she said.

Meggs said she is reluctant to ask others for help. She'd rather volunteer to help others, she said.

Currently, she and her husband, Danny, distribute bakery goods donated by her local church to fellow FEMA park residents. Danny is also disabled from a roofing accident.

The couple will soon face another challenge -- finding an affordable place to live after the FEMA park closes Feb. 13.

The couple has applied to purchase their 70-foot-long FEMA trailer. But the Meggs have no idea where they would put it.

FEMA long-term recovery members are discussing options to assist residents who haven't found places to live by the deadline, said Mildred Acevedo, a FEMA spokeswoman.

"I have no idea where we'll go," said Shirley Meggs. "I'm hoping and praying God will watch over us and provide."

By GREG MARTIN

Staff Writer


Click Here For Original Article Online

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Thursday, January 12, 2006

Endo Pharmaceuticals Honors Those 'Making A Difference' in Chronic Pain

Endo Pharmaceuticals Honors Those 'Making A Difference' in Chronic Pain

Award Spotlights Three Inspiring Individuals for Their Outstanding
Contributions to the Field of Pain Management


CHADDS FORD, Pa., Jan. 11 /PRNewswire/ -- Endo Pharmaceuticals Inc., a market leader in pain management, today announced the winners of the second annual "Making A Difference" Award, designed to honor and celebrate the exceptional work and achievements of those treating and/or living with pain. Three winners were selected in the categories of patient, professional, and caregiver by a panel of judges comprised of experts in the field of pain management. The winners are Chris Gatlin, professional, John Gold, caregiver, and Bert Jenkins, patient.

"With millions of Americans suffering with chronic pain every year, it's important to acknowledge those who are committed to both keeping pain on the national agenda and improving the lives of people with pain," said Peter A. Lankau, president and chief executive officer. "Endo is proud to recognize these remarkable individuals, who through their efforts are truly making a difference for those suffering from pain."

The "Making A Difference" Award was developed by Endo Pharmaceuticals to showcase and encourage the professional and personal contributions made by individuals in the struggle to manage chronic and acute pain. The three winners were chosen because of their inspiring achievements in dealing with their own pain and helping others in pain.


An expert panel, including Dr. Charles Argoff, director of North Shore University Hospital - Cohn Pain Center, Dr. Paul Arnstein, associate professor at Boston College and 2004 president of the American Society for Pain Management Nursing, and Dr. James N. Campbell, president and chairman of the board of the American Pain Foundation and professor of neurosurgery of the Blaustein Pain Treatment Center at the Johns Hopkins Hospital, reviewed the nominations and selected the winners from among 60 nominations received from across the United States. Each winner will receive a $1,500 cash award from Endo Pharmaceuticals, which may be distributed to the individual or to his or her charity of choice.



Winners


Professional:
Chris Gatlin
Baton Rouge, Louisiana.


Chris Gatlin is the founder and organizer of the Louisiana Pain Initiative(LPI), which includes four subgroups: Initiative Development, Professional Education, Public Awareness, and Legislative Issues. Chris has facilitated partnerships with the American Alliance of Cancer Pain Initiatives, American Pain Foundation, and the American Cancer Society. Along with recent Louisiana governors, she instituted September as "Pain Awareness Month" in the state.


Caregiver:
John Gold
Portland, Maine


As the husband of a rheumatoid arthritis sufferer, John has been an exceptional and compassionate caregiver. John assists his wife, Susan Gold, in her home and work duties. With gentle humor, he keeps his wife on track in tending to her physical needs. He is by her side for medical appointments, tests, and even surgery. Perhaps most important, he encourages her to continue her work with the Chronic Pain Support Group as the creator of the group's website and provider of support to callers experiencing pain.


Patient:
Bert Jenkins
Hattiesburg, Mississippi


An 80-year-old World War II veteran, Bert Jenkins lost a leg in a crude amputation at the hands of a German surgeon while a prisoner of war. Jenkins has managed his pain and the use of prosthesis through physical therapy and a determination to live a full and active life. He is a member of both the Mississippi Sports Hall of Fame and the Mississippi Association of Coaches Hall of Fame. In 1989, Jenkins was honored by the NCAA as the National High School Coach of the Year. He coached NBA notable Chris Jackson, who said, "Mr. Jenkins was the single most influential person in my life." His life on and off the court shows his strengths by serving as a model of endurance and recovery in the face of obstinate pain.


About Endo

A wholly owned subsidiary of Endo Pharmaceuticals Holdings Inc. (Nasdaq: ENDP), Endo Pharmaceuticals Inc. is a fully integrated specialty pharmaceutical company with market leadership in pain management products. The company researches, develops, produces and markets a broad product offering of branded and generic pharmaceuticals, meeting the needs of healthcare professionals and consumers alike. More information, including this and past press releases of Endo Pharmaceuticals Holdings Inc., is available online at http://www.endo.com.

SOURCE Endo Pharmaceuticals Inc.
Web Site: http://www.endo.com


Original Article @ http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/01-11-2006/0004246908&EDATE=

Cabell woman says Workers' Comp employee is liable


The West Virginia Record, originally uploaded by rsdscrpsnews.

Cabell woman says Workers' Comp employee is liable

Wednesday, January 11, 2006

By Chris Dickerson - Charleston Bureau

CHARLESTON - A Cabell County woman claims a case manager for the West Virginia Workers' Compensation Commission is to blame for worsening condition following a work-related accident.

In a lawsuit filed last month in Kanawha Circuit Court, Kathy Egnor sues Shirley Armstead, a claims worker for the state Workers' Comp Commission.

On Feb. 12, 2003, Egnor injured her right ankle while working as a maid for Uptowner Inns Inc. She filed a Workers' Comp claim, which was ruled compensable on March 3, 2003. She was under the care of Dr. Jeffrey Shook with Scott Orthopedic Group in Huntington.

In addition to a right ankle and foot sprain, Shook soon diagnosed Egnor with early signs of reflex sympathetic disorder (RSD).

WebMD.com says reflex sympathetic dystrophy syndrome (RSDS), also known as complex regional pain syndrome, is a rare disorder of the sympathetic nervous system that is characterized by chronic, severe pain. The sympathetic nervous system is that part of the autonomic nervous system that regulates involuntary functions of the body such as increasing heart rate, constricting blood vessels, and increasing blood pressure. Excessive or abnormal responses of portions of the sympathetic nervous system are thought to be responsible for the pain associated with reflex sympathetic dystrophy syndrome..

The suit, filed by Huntington attorney Timothy P. Rosinsky, says Workers' Comp granted Shook's requests for physical therapy on May 12, 2003, but noted that RSD was not part of her claim. The ruling, however, did not deny treatment for RSD.

The suit also claims Workers' Comp approved Shook's requests for treatment until Dec. 9, 2003. Then, the commission issued two protestable rulings. One ruling denied his request for a pain management consultation on the ground that RSD was not a compensable diagnosis in this case. The other ruling denied Shook's request for six lumbar sympathetic blocks on same ground.

Armstead, the suit says, authored both rulings.

Egnor continued to receive approval from Workers' Comp for her medication, but she was denied a series of "lumbar sympathetic blocks aimed at aggressively treating her RSD condition."

According to painandwellness.com, a sympathetic block involves injecting local anesthetic around the sympathetic nerves in the neck or low back. For back, leg, or foot pain, the sympathetic nerves in the low back are targeted. This is a lumbar sympathetic block.

The suit says Egnor had a consultation with Dr. David Caraway, a pain specialist, in November 2003. The suit says Caraway is an expert in the treatment of RSD disorders. He requested approval for the lumbar sympathetic blocks after the consult, and forwarded that request to Workers' Comp.

In December 2003, Armstead denied that treatment, according to the suit.

"There was absolutely no medical evidence in plaintiff's workers' compensation file to support Ms. Armstead's rulings of December 9, 2003, which denied plaintiff treatment for RSD," the suit states. "Indeed, there was no review by the Office of Medical Management at the Commission, nor were there any independent medical findings to justify Ms. Armstead's decision in this regard."

The delay in approval prompted Caraway to write Armstead a letter dated April 8, 2004. He also submitted a "diagnosis update" to add RSD as a compensable diagnosis in Egnor's case.

In the letter, he said Egnor was "progressively losing function and may eventually lose all function of her foot if she is not aggressively treated."

The suit says Armstead then did not seek further medical evidence, nor did she refer the matter to the Office of Medical Management. It also claims she also made no effort to confirm or deny the diagnosis by virtue of an independent medical evaluation.

In October, Workers' Comp recognized RSD in the case and approved the treatment recommended by Caraway.

"Dr. Caraway has expressed an opinion to a reasonable degree of medical probability, by virtue of testimony in plaintiff's workers' compensation case, that the aforementioned delay in authorization of treatment ( i.e. the lumbar sympathetic nerve blocks) was a deterrent to the effective treatment of plaintiff's RSD condition, and that this delay also explains the worsening of her condition in the case," the suit states.

"Unfortunately, the RSD condition has now firmly taken root in plaintiff's body and is spreading. The Commission has authorized, and the claimant underwent, the implantation of a spinal stimulator device, which is designed to alleviate her RSD symptoms. However, at this point, plaintiff is unable to return to her job at the Uptowner Inns as a maid, and Dr. Caraway has informed plaintiff that her condition is likely to be progressive."

West Virginia Code says an employee of a state agency is immune from liability unless her "acts or omissions were with malicious purpose, in bad faith, or in a wanton or reckless manner."

The suit states Egnor can't claim Armstead was malicious or in bad faith.

"Nevertheless, plaintiff respectfully asserts that Ms. Armstead's actions were wanton and reckless, especially after she receive Dr. Caraway's report dated April 8, 2003," the suit states.

"Ms. Armstead had an arsenal of resources available to her, and yet she used none of those resources. … Instead, she inexplicably ignored Dr. Caraway's serious warnings in this case.

"Shirley Armstead has absolutely no medical training, and she is certainly not in a position to disagree and/or disregard the opinions of a noted expert in his area. The warnings in the April 8, 2003, letter from Dr. Caraway are so serious that any reasonable person would have taken immediate action to address the issue, and yet Ms. Armstead took no such action."

As a result, Egnor says she has suffered damages in the form of a worsening in the RSD in her foot and throughout her body. She also asserts claims for past, present and future wage loss; past, present and future medical expenses; and past, present and future pain and suffering.

She seeks compensatory damages in an amount sufficient to compensate her for her losses; pre- and post-judgment interest; attorney fees and costs; other relief deemed just.

Egnor seeks a jury trial.

The case has been assigned to Circuit Judge Paul Zakaib.

Kanawha Circuit Court case number: 05-C-2762


Original Article @ http://www.wvrecord.com/news/newsview.asp?c=172982

Wednesday, January 11, 2006

Pain as constant companion


Jill Korzon, originally uploaded by rsdscrpsnews.

Pain as constant companion

A simple fall or broken bone can sometimes lead to reflex sympathetic dystrophy — a chronic pain syndrome.
Posted by the Asbury Park Press on 01/10/06
BY MICHAEL RILEY
STAFF WRITER

Jill Korzon of Brick ran track in high school. When she was 15, she hurt her knee in the weight room, had arthroscopic surgery, and, in a very real sense, the pain has rarely left her.

That was nearly a decade ago.

"On a bad day, I couldn't get out of bed," she says. "The pain would spread all the way down my leg to my foot."

Korzon has something called Reflex Sympathetic Dystrophy Syndrome also known as Complex Regional Pain Syndrome, a chronic neurological syndrome. According to the RSD Association, the condition is a malfunction of part of the nervous system after an injury. Nerves misfire, sending constant pain signals to the affected area.

The syndrome involves the sympathetic nervous system, says Dr. Richard Fernicola, a pain management specialist affiliated with Shore Rehabilitation Institute of the Ocean Medical Center in Brick.



The sympathetic nervous system, Fernicola explains, is a part of the nervous system that operates involuntary responses such as the "fight or flight" response.

There are four basic factors that can bring about the condition, he says: infection, trauma, surgery or some vascular abnormality.

"The trauma can be anywhere from minimal to severe," Fernicola says.

RSD is felt in the two or three weeks after the initial assault on the system, but sometimes is triggered by a trauma or infection so ostensibly minor that it goes unnoticed in the patient.

"What happens is that things don't go in the right direction," says Fernicola. "There is a change or worsening in the area characterized by redness, burning sensation and swelling. And pain. The trauma can be anywhere from minimal to severe," Fernicola says. "In fact, it seems that a fracture of the long bones in the arm or the leg is less likely to bring on the condition than, say, a fracture of a bone in the hands or the feet."

The fact that the malady goes by a number of different names may make a diagnosis of RSD difficult, says Fernicola.

And that's not good.

"Early intervention is key to treatment of RSD," Fernicola says. "Even with early diagnosis, it can take a full year and a half to regain a productive life. As the condition goes through three stages, the chances for a cure decline, leaving only palliative care."

Andrew Aylett agrees that early therapy can be very effective in treating RSD. Aylett, an occupational therapist and certified hand therapist whose practice, Advanced Hand Therapy in Wall, knows that RSD is not a common diagnosis but one that needs to be treated quickly when detected.

There is a limited window of opportunity to make an improvement, Aylett says.

Fernicola says that in the latter stages of the syndrome, doctors may be reduced to giving palliative care.

"What you have with RSD are nerve endings firing incorrectly, causing disproportionate pain. I've seen patients who could be brought to tears by blowing on their arm," Aylett says.

Aylett says that in the presence of RSD, therapy has to include gentle desensitization techniques.

"Aggressive therapy may well reinforce the incorrect firing of nerve cells and make the condition worse.

Korzon was diagnosed with RSD within three months of her injury.

"Some people go years without being diagnosed," Korzon says.

Indeed, after physical therapy and treatment, Korzon's RSD went into remission for a number of years.

"Then, during my first week in college, I slipped and fell on a wet floor," she says.

And from that day to the present, Korzon has battled the pain.

Treatments can include physical therapy to increase the range of motion. For more severe cases anti-depressant or anti-seizure medicines are prescribed.

Then there are the needles.

"Blockers," Korzon calls them, and over the years, she has had plenty of them.

They are injections of numbing agents and a steroid that can provide relief for weeks at a time. But they are not without their own kind of pain.

"When the needle touches the nerve, it can feel like something touching the exposed nerve of a tooth," she says.

Their value, says Fernicola, comes in their ability to "break the cycle" that causes the excruciating pain.

Korzon also has used devices that provide electrical stimulation to surface nerves, which helps block the transmission of pain.

In some cases, Fernicola says, surgery is indicated. "Cutting away part of the "ganglia" — the bundle of nerves that sends the messages of pain.

Korzon has not had that kind of surgery.

For now, Korzon says, she lives with an implanted device to block pain, takes daily medicines and is researching experimental treatments.

Over the years she has undergone a wide variety of treatments.

"Everything helps, but nothing helps permanently," Korzon says.

Yet there is hope.

"My daughter, Raina, is 1 year old," she says. "I look at her, and know I have to push through the pain."


RSD/CRPS FACT SHEET

Reflex Sympathetic Dystrophy Syndrome, also known as Complex Regional Pain Syndrome, is a chronic pain syndrome characterized by severe and relentless pain. It affects between 200,000 and 1.2 million Americans.

CRPS/RSD is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. The syndrome develops in response to an event the body regards as traumatic, such as an accident or a medical procedure. This syndrome may follow 5 percent of all injuries.

CRPS/RSD is two to three times more frequent in women than men.

The mean age at diagnosis is 42 years. More injuries are being seen among young girls, and children as young as 3 years old can get CRPS/RSD.

Source: Reflex Sympathetic Dystrophy Syndrome Association
Related Links
RSD Association
Agency for Healthcare Research and Quality


Original Article @ http://www.app.com/apps/pbcs.dll/article?AID=/20060110/LIFE11/601100380/1006/NEWS02

Tuesday, January 10, 2006

Chronic pain linked to spinal cord protein


Toronto Star, originally uploaded by rsdscrpsnews.

Chronic pain linked to spinal cord protein
Wind blowing on skin or touch of a shirt is extremely painful
Discovery will help sufferers rebuffed for lack of physical signs
Dec. 15, 2005. 04:45 AM
ELAINE CAREY
HEALTH REPORTER

Canadian scientists have discovered a protein that plays a key role in causing debilitating, chronic pain that until now has never been understood.

"Some people can't wear shirts or they're not able to go out because the touch of a breeze gives them lightning-like pain," said Dr. Michael Salter, who heads the University of Toronto Centre for the Study of Pain.

"The worst part is that there's often no physical sign that something's wrong. They're suffering intensely, they get no relief from medications and their family and friends don't understand."

The discovery paves the way for developing new ways of detecting and treating the chronic pain that affects thousands of Canadians, says a study published yesterday in the scientific journal Nature.

Chronic or neuropathic pain is caused by nerve damage brought on by an injury or illnesses such as cancer, HIV-AIDS or diabetes, which causes changes in spinal cord cells called microglia.

Once damaged, the scientists discovered that microglia release a protein called brain-derived neurotrophic factor which causes spinal neurons to send an abnormal signal to the pain-processing networks in the brain.

Microglia normally act to suppress pain signals to the brain and spinal cord but the protein converts it into a mechanism that amplifies them, said Salter, co-principal investigator with Dr. Yves De Koninck of Laval University and a senior scientist at Sick Kids Hospital.

"One of the messages from this paper ... is that after these kinds of injuries to nerves in your arm or leg or hand, you can have changes in your spinal cord that can perpetuate pain and actually intensify it long after the injury has healed," he said.

"This is an important discovery for the millions of Canadians who suffer from debilitating chronic pain that cannot currently be treated," said Michael Wilson, chair of NeuroScience Canada, one of the funders of the research through the Brain Repair Program.

`If pain was spelled flu, it would already be considered an epidemic in this country'

Barry Ulmer, Chronic Pain Association

The discovery "represents an important shift that could soon provide patients with effective treatments and allow them to be active again in our society," Wilson said.

Chronic pain is "a touchy subject" because there are no obvious physical symptoms and sufferers are often told they are making it up or faking it, Salter said. Even strong painkillers don't suppress the pain because they work on only some of the large pain-processing networks but not all of them, he said.

"Typically people with neuropathic pain get very little pain relief from traditional painkillers like morphine or Aspirin or acetaminophen," he said.

For some people the pain is so acute that even common events like wind blowing on the skin or the touch of a shirt is extremely painful.

When neuropathic pain attacks children with cancer who are undergoing chemotherapy, the pain is so excruciating the treatment has to be stopped.

The discovery of how microglia communicate with nerve cells in the pain- processing networks should help in developing drugs to treat it, Salter said. And it could lead to a diagnostic test to identify it.

"You could go and have a test and show your physician: `Look, there really is something wrong with me,'" he said. That is a bigger issue in the United States where many chronic pain sufferers can't get any health care benefits.

Barry Ulmer, executive director of the Chronic Pain Association of Canada, said the findings were encouraging but were still only at the laboratory stage and "it's got a long way to go.

"If pain was spelled flu, it would already be considered an epidemic in this country," said Ulmer, whose wife suffers from chronic pain. "Anything that comes forward that takes away from the subjective nature of pain is helpful," he said. "Most people are stigmatized because of it. Anything positive that comes along has to be a bonus."


Original Article @ http://www.thestar.com/NASApp/cs/ContentServer?pagename=thestar/Layout/Article_Type1&c=Article&cid=1134601812789&call_pageid=968332188492&col=968793972154

Monday, January 09, 2006

`How is this kid still alive?'


The Times, originally uploaded by rsdscrpsnews.

`How is this kid still alive?'
Sunday, January 01, 2006
By BRIAN X. McCRONE
Staff Writer

There were times when Danny DeFilippo lay in bed, wishing himself dead.

Constant pain will do that to a person.

But such thoughts have slowly melted away in the two years since the Route 29 car crash that claimed the lives of his four best friends. DeFilippo still wrestles with the burden of a fate that left him the lone survivor.

Physically, he has overcome two broken legs and a torn aorta that required 25 surgeries those scary first weeks, only then to be diagnosed with a rare neurological disorder that left him in constant, arthritis-like pain.

Mentally, he refuses to travel Route 29, never mind venturing near KatManDu, the Trenton nightclub where he and his friends had been drinking before heading home that rain-soaked night in May 2003.

It all came rushing back when DeFilippo heard about another crash along Route 29 that took four lives again - this time young women - in November.

"Honest to God, there's something about that pavement with the sections of concrete when you hit the cracks and the dut-dut, dut-dut," DeFilippo said of Route 29, which has had some sections repaved in the past two years. "I can hear it and I can see that pavement."

DeFilippo's raspy voice, the remnant of a once-broken vocal cord, rises when he talks about drinking and driving, about friends and family members who still drink and drive despite knowing his story and the story of his friends.

"I have other friends that drive drunk all the time, still do," DeFilippo, 25, said in his first interview since the crash. "It doesn't make any sense to me. I get so infuriated by it, like, you saw me first-hand go through this."

The grief and the physical pain over the past two years has become a wall separating so many people he once thought close, DeFilippo said at the Langhorne, Pa., town house he shares with his fiancee, Margie.

"I lost all kinds of people because they don't want to be around you when you're suffering," he said. "They want to be around happy, fun people."

DeFilippo was told by doctors that the ripped aorta he suffered usually killed people within seven seconds. Somehow, he lasted seven hours before his heart's main outward-pumping valve was patched by doctors at Hahnemann Hospital in Philadelphia.

"They opened me up and saw my injuries and said, `How is this kid still alive?' " DeFilippo said. "My mother said that after the doctors came out (of the surgery) they were literally cheering, giving high-fives. This is what they went to medical school for."

The blood loss, the emergency surgeries in the days following the crash and his bedridden life over the next few months dropped DeFilippo to 80 pounds.

Back up to 145 now, he still is skinny, his chest shallow with a long scar reaching from the left side to the bottom of his left shoulder blade - a ragged, upward-curved reminder.

"That first surgery, on my aorta, lasted 12 hours," he said. The stay in the intensive care unit lasted six weeks, but more pain was to come.

A week after DeFilippo was released from ICU and admitted to a convalescence ward at Hahnemann, his father, Louis, died after a two-year battle with cancer.

"I was in the hospital downstairs," DeFilippo said. "My father was in the hospital on the second floor."

The death of his father meant the loss of almost all the male role models he had growing up in Ewing.

"That was every male influence I had," DeFilippo said. "Besides a couple others, my father raised me, and I grew up with these kids. And all that was taken away from me."

-- -- --

Five young men who had been friends since they played on the same youth soccer teams in Ewing gathered on a night in May 2003 to enjoy a rare opportunity to hang out together.

The group had been splintered since the beginning of high school, when Ryan Fesko and Stephen Elliot enrolled at The Pennington School, DeFilippo and Joseph Bellardo III enrolled at Notre Dame High School and Leonard Pataki went to Ewing High School.

The boys eventually drifted further apart in college, when DeFilippo attended LaSalle, Fesko went to The College of New Jersey and Elliot went on to Rutgers University.

But it was nights like the one in May that they all looked forward to, coming back to the old Ewing-Trenton area haunts to see old friends. KatManDu was one of their favorites.

When the night ended in a violent car wreck, it seemingly ripped apart an entire community in which the five friends had become so entwined over the years.

"We were just going out (that night). We celebrated life every night and that's the kind of people we were," DeFilippo said. "We didn't necessarily go out and party and drink. We were good spirits. We went out and saw people from high school and had fun."

DeFilippo said he and Bellardo spent the night at the club sitting at a table, having a couple of beers and talking about old times and the condition of DeFilippo's father.

DeFilippo said it was a terrible combination of circumstances that led to the horrible end of an otherwise joyous night.



"It's terrible because it happened to good kids," DeFilippo said of the crash.

-- -- --

Around every turn, DeFilippo has been tested.

The most difficult challenge came not in the months spent in the ICU or when he was told his father died but in the very days when he seemed just about ready to get back into the daily grind of normal life.

"I was recovering from my initial injuries, and by December (2003) I was running on a treadmill and back to work when the RSD (reflexive sympathetic dystrophy) happened," he said. "I had no idea what it was. That's the problem with the disorder."

RSD is a rare disease that affects the nervous system. It afflicts more than 200,000 Americans with a constant pain that can become unbearable.

"I was suffering," he said. "I had 24-hour pain, which is literally torture. When I was real sick, I couldn't get out of bed. There's still days when I can't get out of bed I'm in so much pain. I would go unconscious from the pain. I would throw up from the pain."

No treatment in the United States was able to significantly dull the daily agony of RSD, DeFilippo said, so he decided to attempt to raise enough money for a trip to Germany, where an experimental treatment is performed.

He and his family held a golf tournament in the summer of 2004 to raise money for the trip and procedure, which included a dangerous five-day induced coma during which the patient is pumped with a large amount of the powerful anesthetic ketamine.

The procedure remains banned in the United States, where federal regulations prohibit any treatments that induce comas for longer than two days.

The golf tournament raised $55,000, and its success has fueled DeFilippo's desire to help others with the painful disorder, he said, pointing to his organization, the Daniel DeFilippo RSD Foundation.

Another fund raiser, for a young Philadelphia mother, is set for next April at the Mercer Oaks Golf Course in Ewing.

The success of the treatment has eased his pain tremendously, though arthritis- like aches, sometimes severe, do continue to throb in his left leg throughout the day.

But life is better since the treatment, he said, so much so that he is starting another accounting job.

"I'm going to try working part time again," DeFilippo said, adding that he likely would begin picking up some shifts in the new year.

-- -- --

Despite his hardships, DeFilippo has made a solemn oath to himself to dwell on the positives of life. "Every hour, every minute I have without pain is golden to me," he said.

And there are many things that have given him reason for hope.

DeFilippo met a young woman last year who could identify with his tragedy, as hard as that might be.

His fiancee, Margie Pajak, 24, also was in a terrible car crash, DeFilippo said, suffering a broken back and legs and the loss of a couple of her best friends.

The two met when Pajak, who works for New Jersey Manufacturers Insurance Co. in Ewing, saw a story about DeFilippo in The Times several months after the crash.

"She called me up, interested in the foundation I was starting," he said. He asked her to marry him four months ago. They will be wed in October.

DeFilippo also has found a strong sense of pride in speaking to youngsters, as well as adults, about the disastrous combination of drinking and driving.

In the past two years, he has spoken to students at Ewing and Notre Dame high schools, elementary school children in Philadelphia and before an audience of 3,000 New Jersey police officers at a PBA convention in Atlantic City.

"I'm out to help people now," DeFilippo said. "And it's something I am thinking that I could do one day full time: be a motivational speaker. I think I could do that."

For now, DeFilippo walks gingerly around his suburban home in slippers, keeping a constant fire burning "because it helps the pain in my body." He is taking it literally one step at a time.

"I'm going to have struggles to deal with forever because of this accident," DeFilippo said. "I'm always going to have pain. I'm always going to be reminded."

NOTE: Contact Brian X. McCrone at bmccrone@njtimes.com or (609) 989-5716.


Original Article @ http://www.nj.com/search/index.ssf?/base/news-0/113610655554530.xml?times?nxt&coll=5&thispage=6





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Part 2
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A long way for treatment
Sunday, January 01, 2006
By BRIAN X. McCRONE
Staff Writer

For an estimated 200,000 Americans, reflexive sympathetic dystrophy (RSD) is so debilitating that they cannot function, losing the ability to button shirts, comb their hair or maintain a job.

For Danny DeFilippo, the soft breeze from a ceiling fan evoked such pain in his leg that he would often pass out or throw up from it.

"It often originates from broken bones or even sprains," said Jim Broatch, executive director of the Reflex Sympathetic Dystrophy Syndrome Association. "Eighty percent of people who develop this as adults don't get better."

More than 40 percent of RSD patients polled recently said they had considered suicide at times as an escape from the intense pain.

Any injury related to the nervous system can spark RSD. Bone breaks are the most common causes.

DeFilippo's RSD likely originated from the broken left leg he suffered in the May 2003 car crash. Symptoms became apparent several months later as he was healing from the multiple fractures in both legs. He was diagnosed after his doctor at Hahnemann consulted one of the leading neurologists in the field, Dr. Robert Swartzmann, who also practices at the Philadelphia hospital.

He tried everything to ease the creeping pain that eventually spread from his leg and took over his whole body.

"I put a heating pad on it. I put the fire on in the fireplace. My fiancee will put oil on me," DeFilippo said recently. "I have days, especially before the snowstorm like I'm fearing tomorrow night, I feel it so much. Then there's days like this when I feel good, I can walk around."

After months of suffering while doctors said there was no complete cure yet available in the United States, DeFilippo decided last year to take a chance on an experimental treatment in Germany.

In December 2004, DeFilippo spent five days in an induced coma while an extremely large amount of a strong anesthetic called ketamine was constantly circulated through his system.

Since then, DeFilippo said, he has felt much less pain, though some remains.

He continues treatment in the Uniited States, receiving "booster" treatments once every couple months to continue to keep the pain minimal.

But Broatch said it is still too early to begin promoting the experimental, and dangerous, German procedure.

"It's not a cure and when you come back you need these booster treatments. The high-dose coma is dangerous, it's done in an ICU," Broatch said.

For more information on his foundation's next fund raiser, scheduled for April 10 at Mercer Oaks Golf Course in Ewing, contact Danny DeFilippo at (267) 229-9430 or (215) 880-1154.



Original Article @ http://www.nj.com/search/index.ssf?/base/news-3/113610656954530.xml?times?ngx&coll=5#continue