Tuesday, May 29, 2007

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Monday, May 28, 2007

Mysterious Pediatric Pain Ailment Addressed in First-Ever Conference

Mysterious Pediatric Pain Ailment Addressed in First-Ever Conference

Packard Children's Hospital to Host National Experts May 30 - 31

STANFORD, Calif., May 22 /PRNewswire/ -- The words 'chronic pain' shouldn't be part of any child's vocabulary. But twelve-year-old Elana Hunter knows all about it. In 2005, this formerly active Bay Area girl noticed an inexplicable tenderness in her left wrist. The pain rapidly escalated during the next few days, making tiny arm movements excruciating and even causing the surrounding skin to turn grey and peel.

Elana is an example of the 10 to 20 children each year who are treated at Lucile Packard Children's Hospital at Stanford for chronic regional pain syndrome, or CRPS -- a mystifying condition in which the brain registers severe, unrelenting pain in an affected limb without any obvious physiological cause. CRPS is difficult to diagnose and even harder to treat -- particularly in children. Weeks of intensive therapy at Packard Children's, coupled with strong family support, helped to resolve Elana's wrist pain and allowed her to take up the trumpet. Not everyone is as fortunate.

"It's very frustrating," said Packard Children's anesthesiologist Elliot Krane, MD, who directs the hospital's pediatric pain management clinic and is a professor at the Stanford University School of Medicine. "It's horrible for a child to have chronic pain, but we can't always help them as much as we'd like. Some kids do extremely well with treatment, but some remain resistant to our best medications and therapies."

That should change soon. On May 30 and 31, Krane and Packard Children's will host the first-ever conference to allow pediatric CRPS experts from across the nation to share ideas and talk shop. "We need to get everyone together in one room and discover our common ground," said Krane. "We can find out what works and what doesn't; what we know and what we need to know."

The disorder often starts with a seemingly trivial injury that appears to heal normally but is followed by severe, persistent burning pain in the affected limb that can last for years. Although it's not known what causes CRPS, physicians agree that it's likely the result of abnormal nerve impulses in the brain that are interpreted as pain in the now-normal limb. Knowing what to do about it is another matter.

"It's like we're reinventing the wheel every time we see a new patient," said Krane of the many different, multidisciplinary approaches to treatment. "And every practitioner has his or her own idea of what works and what doesn't work."

During the conference, anesthesiologists, psychologists, rheumatologists, adolescent medicine specialists, and neurologists from Children's Hospital Boston; Harvard Medical School; Johns Hopkins University; University of California, San Francisco; Chicago Memorial Children's Hospital; University of California, Los Angeles; Seattle Children's Hospital; Duke University; Children's Hospital of Philadelphia; and other institutions will join forces to discuss how best to evaluate and treat children with CRPS. The aim is to generate a consensus statement to guide treatment of kids around the country and to marshal their forces to conduct multi-center clinical trials to test new therapies. Pooling resources in such a manner will allow the researchers to conduct studies with much greater statistical power than if patients from only one institution were included.

Although it may seem to outsiders like just another conference, the outcome is tremendously important to children like Elana, who recently struggled with and overcame another CPRS episode, this time in her foot. But she's not letting it get her down. While she and her family wait for a permanent cure, she remains active in school, playing in the band and participating in track and soccer.

The conference is supported by Barbara and Phil Endliss, the Mayday Fund, and the Kimball Endowment for Pediatric Pain Management at Lucile Packard Children's Hospital.

Note to media: The Juvenile/Adolescent Chronic Regional Pain Syndrome Consensus Conference will take place on the Stanford University campus on May 30 and 31. Reporters interested in attending the conference to meet the experts and learn more about the condition should contact Packard Children's Media Relations Manager Robert Dicks at 650-497-8364 or email rdicks@lpch.org.

About Lucile Packard Children's Hospital

Ranked as one of the best pediatric hospitals in the nation by U.S.News & World Report and Child magazine, Lucile Packard Children's Hospital at Stanford is a 264-bed hospital devoted to the care of children and expectant mothers. Providing pediatric and obstetric medical and surgical services and associated with the Stanford University School of Medicine, Packard Children's offers patients locally, regionally and nationally the full range of health care programs and services -- from preventive and routine care to the diagnosis and treatment of serious illness and injury. For more information, visit http://www.lpch.org/.

Website: http://www.lpch.org/

Click Here For The Original Article Online.


Saturday, May 26, 2007

Local woman suffers from years of pain

Local woman suffers from years of pain
Published: May 07, 2007 10:34 am

ADA — Coni Turner certainly wasn’t pleased when doctors told her she had a rare disease called RSDS. But — at least — she was relieved to know that her intense, excruciating pain was not “imaginary.”

It has been 15 years since the 47-year-old Ada woman had her first episode with reflex sympathetic dystrophy syndrome, a debilitating chronic pain disorder involving the sympathetic nervous system. It typically results from an injury or trauma, which sets off the body’s mechanism for pain recognition.

In RSDS, the normal system of pain perception begins to misfire and an abnormal cycle of pain begins. As the disorder progresses, the abnormal pain of the sympathetic nervous system affects other areas of the body and can result in total disability as muscles, bones, skin and the autonomic immune system become involved.

The pain that Turner and other RSDS sufferers face is often “out of proportion to the severity of the injury,” according to officials with the Reflex Sympathetic Dystrophy Syndrome Association.

While a diagnosis of RSDS is difficult, the RSDS Association estimates that between 1.5 million and 6 million people suffer from the disease.

“When I was 32 years old, a coffee cup fell off the table and hit my knee,” Coni said. “It swelled up and kept swelling. Then I twisted the same knee. I began having intense pain. And it was two years before my doctor determined that I had RSDS.”

In 1983 Coni was a very active 22-year-old — the second woman to operate a forklift at General Tire, which was located in the Flex-N-Gate facilities then. There, she met her future husband Ricky, a Tupelo native. After a courtship, the two married and their future looked bright.

But Coni’s illness has snuffed out many of their hopes and dreams.

During that period, she has been hospitalized more than 20 times. Today, her world has shrunk to one room in their Ada home — a room without a bathroom. After having her left leg amputated at the knee, Coni’s traveling is limited to a wheelchair.

“I can’t get into the bathroom because the door is not wide enough to get my wheelchair through,” she said. “I’m almost like a prisoner in my own house. But we can’t afford to remodel.”

While Coni is on disability and has Medicare, there’s never enough cash in the household to keep up with the bills. Ricky, who has worked at Flex-N-Gate and its predecessors — Camrose, JP Emco and General Tire — for almost a quarter of a century, makes a decent wage — just enough to disqualify the family for some assistance to make their home handicapped-accessible.

Farmers State Bank in Allen has opened a special fund to help the Turners out. You can contribute at the bank or mail to The Coni Turner Special Account, Farmers State Bank, Attn: Glenda Howard, P.O. Box 467, Allen, OK 74825.

Coni said her husband has been a rock of support over the years.

“Ricky has been the perfect husband,” she said. “He has stood by every step of the way and worked a full-time job. My mother has also helped, staying with me when he’s at work. I wish every woman had a husband like mine.”

Ricky said officials at his workplace have been very supportive.

“I really have some outstanding supervisors at Flex-N-Gate,” he said. “They understand what we are going through and they’ve given me time off when we’ve needed it. That has really meant a lot.”

The Turners said they were very appreciative of the assistance provided by Southwest Church of Christ in Ada.

“They put a new roof on our house,” Coni said. “That really meant a lot to us.”

Meanwhile, Coni, who grew up in Allen, continues to live with her disorder one day at a time.

“It was very frustrating in the beginning when doctors and friends thought my severe pain was in my mind,” she said. “RSDS is a very serious disorder, one that I wouldn’t wish on anyone. I’m just very fortunate to have my husband and mother to look after me. I don’t know what I’d do without them.”

Click Here For The Original Article Online.


Thursday, May 17, 2007

Dog attack victim pursues new leash on life

Dog attack victim pursues new leash on life

Published 05/04/2007 - 9:57 p.m.

Debbie Fair loves dogs. She owns three of her own, but every once in a while, bad memories of a fateful day three years ago this month overtake her emotions, and for good reason.

In April of 2004 her Jack Russell terrier, Chewy, was attacked by a full-grown blond Labrador, and she found herself caught in the middle.

“He was on a short leash. I grabbed my dog and got caught up with this dogfight. I fell backwards and heard a loud pop. My calf muscles had ripped off my bones,” said Fair, who was 44 at the time and living in Vacaville.

Doctors refused to believe her injury was serious enough to require X-rays.

By the time she pursued a second opinion, she had contracted a neurological disorder called Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome. Caused by unhealed broken bones, RSD is now part of Fair’s everyday life. Her physical abilities are limited, and she’s on a regimen of 15 pills a day to control pain and seizures.

“I always tell people that if you don’t use a leash for your dog, you could change someone’s life forever,” said Fair.

Since moving to Discovery Bay last year with her husband Rex and three dogs – Chewy, Peanut and Butter – memories of her active life working in sales and marketing for Gold’s Gym in Vacaville are a blur.

“I can’t work full-time for anybody now,” said Fair, adding that what helps her heal is working from home and enjoying the scenery in her back yard. She also sells Isagenix, a body-cleansing and weight-loss product she marketed at Gold’s Gym before she contracted RSD.

According to Fair, RSD is considered a neurological disorder so severe that Social Security recognizes it as a disability. “I have a disease that physicians say there’s no cure,” said Fair. “But I don’t believe it. I can’t believe it or I won’t have hope. With this product, I’m getting better and better and my quality of living is a great start.”

When it comes to doctors and their diagnosis, Fair encourages everyone to trust their bodies. “I know my body. I was always a health nut,” she said. “I told my doctors to please listen to me.”

Fair is currently working on an RSD educational awareness bill vetoed last October by Governor Arnold Schwarzenegger. She’s hoping the bill will pass the next time around.

“This has affected my whole family,” said Fair, mother of three grown children and grandmother to a 4-month-old baby. “It’s been very hard. My daughter was upset about me taking medications, and I have memory loss, too.”

Pausing to regain her composure, Fair said that her family’s frustration with her memory loss at times adds to her physical pains.

“The medication affects your memory and moods,” she said. “I lost my job, income. My husband had to take on all of my duties. I used to be a super-mom.”

If she could wave a magic wand, all dogs would be on leashes, especially in Discovery Bay. Although she receives compensation from the owners of the dog who attacked her, it doesn’t reverse the consequences of the incident.

“I want people to know that they are responsible for the actions of their dogs,” she said. “They could be changing someone’s life forever.”

For more information, visit www.debbiefair.isagenix.com or www.rsdsa.org.

To comment on this story, visit www.discoverybaypress.com.

Click Here For The Original Article Online.


McGowan Courage Award winners managed to overcome and excel

McGowan Courage Award winners managed to overcome and excel

MANSFIELD -- Eight young people will be honored Wednesday for displaying grace and courage in the face of handicaps, problems or personal tragedy.

As recipients of Mansfield Rotary Club's 40th annual McGowan Courage Awards, each will receive an education fund award of $750 and other gifts during a luncheon at the Mid-Ohio Conference Center. Richland Bank will give each a $100 savings account.

Recipients include:

  • Camille Kelly, Mansfield Senior High School

    Kelly has Spinal Cerebella Ataxia Type 2, a hereditary disease that causes changes in the brain and spinal cord resulting in an uncoordinated walk, poor eye-hand coordination and abnormal speech. She refuses special help getting around at school and does so without complaining while maintaining a respectable grade-point average.

  • Denise Eckert, Mansfield Christian

    In 2003 Eckert was at track practice when she was injured and later diagnosed with Reflex Sympathetic Dystrophy Syndrome. She suffers from a constant, severe headache. Eckert travels to Michigan every few months to see a specialist at the Michigan Head Pain & Neurological Institute, where she has injections into her spine and neck. She has missed almost a year of school, but still is involved in many school and church activities.

  • Crystal Harrod, Lucas High School

    Harrod has overcome family problems, including her mother's battle with cancer. She had to leave her mother and school in another state to make a new home with her grandparents in Lucas, where she has turned her life around. She has become active in her school and church, where she excels in music, and maintains a B average while working part-time at a music store.

  • Susan Shank, Lexington High School

    Shank lost her father when she was in the second grade. She then moved to the Philippines, her mother's native country, where she attended third grade and part of the fourth grade. She moved back to the United States in the fourth grade to live with her aunt, then back to the Philippines to be with her mother, who died of cancer when Shank was 13. After her mother's death, she moved to Lexington to live with cousins. Shank speaks four languages and does well in school.

  • Alexandra Futty, St. Peter's High School

    In 2005, Futty was diagnosed with Stargardt's Disease, a common form of Juvenile Macular Degeneration, which caused her vision to deteriorate to the point that she is considered legally blind. She also suffers from Basilar Migraine headaches,which can cause strokes later in life and make walking difficult. She has endured her ordeal with poise and maturity and has not allowed her afflictions to interfere with school or other activities.

  • Samantha Laux, Clear Fork High School

    In her sophomore year, Laux began to lose her hearing, sight and balance. In order to continue at school, she learned sign language. She continues to take part in school activities and has prompted many others in her school to learn to sign while being an inspiration to students and staff.

  • Derek Knowlton, Madison High School

    In his junior year, Knowlton was diagnosed with Aspergers' Disorder and Obsessive-Compulsive Disorder. With his family, he has learned responsibility and how to deal with life's challenges as he has helped his mother in her struggle against cancer. He has earned the respect of teachers, counselors and friends who have helped him through his difficulties. As a result, he has been able to remain active in the school and community while maintaining an excellent grade-point average and school attendance record.

  • David Baldridge, Ontario High School

    Baldridge has had several surgeries to correct leg and foot problems caused by cerebral palsy, which have created other difficulties. In spite of all that he has become a valuable member of the school's basketball team as a manager. With strong character, he has overcome his disability and earned the respect of teachers from elementary through high school who describe him as conscientious, organized, polite and respectful.

  • Click Here For The Original Article Online.


    $400 pie helps out local woman

    $400 pie helps out local woman

    Posted on Saturday, May 5, 2007

    When Pastor Mark Kelley learned DeAnne Del Pup, a member of his discipleship class at the Bella Vista Assembly of God, needed some help to address a severe health problem, he suggested a pie auction.

    “ Auctioneer Jamey Cope did a great job. I never dreamed we would raise over $ 4, 000 and $ 400 for one pie. That’s incredible, ” Kelley said of the recent event.

    Although the celebrated $ 400 pastry was a pecan pie baked by Tami Kelley, the judges’ first-place award went to a lemon meringue pie from Joyce Senn.

    At age 3, Del Pulp developed psoriasis, a skin disorder that causes skin to grow eight times faster than normal in certain areas of the body. In her teens, Del Pup acquired psoriatic arthritis, an offshoot of psoriasis. Her life was further complicated when, because of an accident, she developed reflex sympathetic dystrophy syndrome, which at the time was untreatable. Del Pup spent the next 10 years confined to a wheel chair.

    Those interested in assisting Del Pup may call the church at 855-2222.

    Click Here For The Original Article Online.


    Family battles nerve disease

    Family battles nerve disease
    Monday, May 14, 2007

    HARRISON - The house, the last one on a secluded road through the woods, is unmarked save for a sign on a tree reading "Orsini." Its occupants, though, are reaching out to millions of people around the world as they lead the fight against a painful nerve disease.

    American RSDHope operates out of a basement office. It consists of four people: Lynne Orsini, the executive director; her son, Keith Orsini; her daughter, Karen Toner; and her son-in-law, Jim Toner.

    Beyond the small office, the organization reaches out to the millions who suffer from reflex sympathetic dystrophy syndrome. The disease is also known as chronic regional pain syndrome.

    The disease's symptoms include an intense burning pain, inflammation of the skin, spasms, short-term memory loss and insomnia. It is often accompanied by allodynia, a condition where a person's sensitivity to touch is heightened, sometimes to the point where wind blowing across the skin is extremely painful.

    "The pain level of this disease is horrible," Karen said. "It changes your life."

    According to a chart provided by American RSDHope, the disease is the most painful form of chronic pain when compared to other conditions on the McGill Pain Index.

    The organization started its work in 1995 after Lynne discovered that her son was suffering from the disease.

    "We couldn't find any information on it," she said.

    Keith's illness was originally misdiagnosed, which Lynne said is a common occurrence. After fracturing his spine in a car accident, the RSDS began to affect his entire body.

    After Keith's illness, Lynne began communicating with other people suffering from the disease and the organization was born.

    "Little by little, it kept growing," Lynne said.

    Today, American RSDHope has helped start support groups across the nation and has contact with groups in England, Australia, Canada and South Africa. It provides information to those suffering from its disease through information packets and its Web site, http://www.rsdhope.org/

    Lynne said the organization raises money by selling awareness items such as T-shirts and bumper stickers. Donations go straight to research, and RSDHope recently announced a $50,000 research grant will be given to Dr. Richard Boles of the Children's Hospital in Los Angeles.

    Lynne said the organization began looking for a matching donation after raising $25,000. They received one from the Reflex Sympathetic Dystrophy Syndrome Association, another RSD awareness organization based in Connecticut. The association also alerted them to Dr. Boles' work.

    Boles and fellow researchers will analyze the mitochondria DNA samples from 300 individuals who have been diagnosed with RSDS.

    The goal of the study is to identify whether energy deficiency plays a role in the cause of RSD, which Boles hopes will lead to more successes in the treatment of the disease.

    "We're pretty excited about it," Lynne said. "I think it holds a lot of promise. But I know we've got a long way to go."

    RSD is divided into Type I and Type II classifications. Type I can result from simple trauma, such as a sprain, or more complex injuries, such as fractures and heart problems. In these cases, a nerve injury cannot be identified right away. Type II, also known as causalgia, is a definable major nerve injury, due to noticeable damage to the nerves.

    There is no cure for the disease, although treatments are available. These include the use of nerve blocks and intrathecal pump implants that deliver medication directly to the spine. Ketamine treatments show the most promise, though they are usually not covered by insurance.

    Lynne said most RSDS sufferers are disabled due to the intense pain or the medications they must take.

    In rare cases, RSDS can be fatal, although Lynne said it is unclear whether this is from the medication, pain or other causes. She cites suicide as the most prevalent cause of death among sufferers of the disease.

    American RSDHope's activities include a mentor program where a person who has had the disease for two to three years can help someone else who has been diagnosed with the disease.

    "There's a lot of angels out there," Lynne said.

    While she handles many of the organization's activities, the other family members all have a role. Keith maintains the group's Web site, Karen handles the e-mail, and Jim helps with a variety of tasks, including heavy lifting.

    Lynne's husband, Bob Orsini, died two years ago, but had played an active part in the activities.

    "He put his heart and soul into this," Karen said.

    "And his retirement fund," Lynne added.

    Click Here For The Original Article Online.


    Monday, May 14, 2007

    Local doctors using unique treatments to relieve pain

    Local doctors using unique treatments to relieve pain

    ((((( Click Here To Watch Video )))))

    (May 1, 2007)

    In a special report that we began Monday night, we told you about one local doctor's quest to find a cure for diabetes. In the process, he's created and patented an alternative treatment similar to accupuncture that can relieve certain kinds of intense pain.

    She's talkative, polite, a 16 year old southern bell from Mississipi. And Candice Baker is suffering from RSDS or Reflex Sympathetic Dystrophy Syndrome.

    What happened to candace baker was a triggered flare up, a terrible side effect of the chronic pain disease. "I was at school and somebody was just scuffling, and someone just hit me in the back so right then, I just felt a tingling down my spine, and I knew something had happened," says Baker.

    Baker says sometimes it feels as if she is being stung by insects, "actually I have had those sensations, like wasps are like stinging my foot all the time"

    14 year old Marisa Williamson, from Illinois is also an RSDS patient, a patient of Dr. Donald Rhodes, a local podiatrist in Corpus Christi, who treats the disease in an unconventional way.

    "What it does, is by stimulating acupuncture points, acupuncture pressure points, reflexology points, as well as free nerve endings, and nerve trunks, it stimulates these guys with what's missing in your body," says Dr. Rhodes.

    Here is how it works, electroids hooked up to strategic nerves in the feet, or hands send electrical impules up nerves to the place in the back that controls the sympathetic nervous system. The nerve system that makes your body do things you don't think about.

    Dr. Rhodes treats a variety of patients with a variety ailments, including Freddy Powers, a colorful song writter from Austin who comes to Corpus Christi for treatement for Parkinson's Disease.

    Freddy still plays chords, in fact just toured with his friends' Merle Haggard and Willie Nelson on their "Last of the Breed" tour.

    Dr. Rhodes is going to be conducting a medical study involving that new machine starting this fall and you or someone you know may be interested in taking part.

    They're looking for diabetic patients, who are concerned about amputation, burning or stinging in their feet, bone damage, kidney problems or who have trouble sleeping.

    If you're interested contact the Coastal Bend Chronic Pain Center at 992-9432.

    Click Here For The Original Article Online.


    Sunday, May 13, 2007

    Woman Brushes Aside Chronic Pain

    Woman Brushes Aside Chronic Pain

    Published: Apr 28, 2007

    Romona Johnson paints to escape the pain.

    "Painting is my therapy," Johnson, 44, said. "It relaxes my soul. When I'm going through that hard time when I can't cook, wash my clothes or take a shower, I paint."

    The urge and need to paint can strike any time for Johnson, who suffers from reflex sympathetic dystrophy. Also known as RSD, the disease is a neurological disorder characterized by severe burning pain, fever, chills and numbness.

    "It's a chronic pain disorder," Johnson said. "I get swelling, I run temperatures. I get hot and cold."

    She often finds it difficult to sleep through the night, which is when she does much of her painting. Her disorder keeps her from swimming, which is one of her favorite activities. She also avoids shopping not only because it is physically difficult, but also because she feels self-conscious.

    "I don't want people looking at me," Johnson said.

    She started seeing symptoms of the disease two years ago, but it wasn't diagnosed until last year. Because of that, Johnson has been on disability since June 2006, when she was laid off from her job as a case manager at Tampa Bay Workforce Alliance.

    Though there is no cure, Johnson is traveling to New York for a month of treatment in hopes of stopping the disease's progress.

    The treatment is being donated by a doctor who prefers anonymity. Her family is covering the travel expenses.

    Johnson calls her artistic style "kaleidoscope" because of her use of colors. Her favorite tools are not paintbrushes, but plastic forks, straws and her personal favorite, plastic shopping bags.

    She starts by pouring paint onto the canvas, then spreads it around using either the fork, the straw or by dabbing it with a crumpled bag.

    She turned to painting on the advice of her psychotherapist, Barbara Cook, after Johnson decided the side effects of her prescription pain medicine were too much.

    "I paint to be at peace," she said. "The medicines were making me anxious."

    Cook said that finding a pleasurable activity, such as painting, can help people with chronic pain by simultaneously providing them with a distraction and a way to express what they are feeling.

    "I use art to help people deal with physical pain or emotional pain," she said. "Art is a way to express what one feels in ways that words do not express."

    The finished products range from pure psychedelic to abstract. Some are just a clever and bright mix of colors, and others are arranged to resemble specific people, places or things.

    Her paint supplies are donated by family members, including her 23-year-old son, Sterling Martin, a tattoo artist in St. Petersburg.

    Johnson doesn't try to profit from her paintings. The only times she has sold art was for charity, most recently to benefit an organization that promotes bone marrow donation.

    "I love helping people," Johnson said. "It makes me feel good."

    Cook said she enjoys Johnson's finished works. "It's very brilliant and profound and expressive of what she's feeling," Cook said. "Her energy is phenomenal. You can just feel the energy that she puts into her art."


    • Reflex Sympathetic Dystrophy Syndrome is characterized by severe and relentless pain. Nerves misfire, sending constant pain signals to the brain. The disease develops in response to an event the body regards as traumatic, such as an accident or a medical procedure. It affects between 200,000 and 1.2 million Americans.

    • Symptoms include persistent moderate-to-severe pain, swelling, abnormal skin color changes, skin temperature, sweating, limited range of movement, movement disorders. Early and accurate diagnosis and appropriate treatment are key to recovery, yet many health care professionals and consumers are unaware of its signs and symptoms. Typically, people with RSD report seeing an average of five physicians before being accurately diagnosed. The disease is two to three times more frequent in females than males.

    • Treatment may include medication, physical therapy, psychological support, sympathetic nerve blocks and, possibly, sympathectomy, or dorsal column stimulator.

    • For information, go to www.rsds.org/index2.html.

    Source: Reflex Sympathetic Dystrophy Syndrome Association Web site

    Reporter Sean C. Ledig can be reached at (813) 865-1507 or sledig@tampatrib.com.

    Click Here For The Original Article Online.


    Saturday, May 12, 2007

    The Mysterious Case of RSD

    The Mysterious Case of RSD

    By: David Gambrill

    As claims officers and defence litigators wrestle with what causes Reflex Sympathetic Dystrophy [RSD], sympathetic Canadian courts are awarding large sums to its sufferers

    Claims officers across Canada should be preparing for the latest type of auto collision-related injury, known as 'Reflex Sympathetic Dystrophy' [RSD].

    Jamie Chipman, a partner at Stewart McKelvey Stirling Scales in Halifax, issued the warning at CICMA/CIAA Ontario's 40th Annual Joint Conference in Toronto.

    Insurance adjusters should have their "ears to the ground," Chipman said, always looking out for the "lizard factor" in claimants who are asserting RSD.

    RSD is of uncertain origin and is a "newly formed and relatively untested" condition, Chipman notes in his conference paper. Sometimes the only way to avoid large claims payouts in RSD cases is to target the credibility of the people asserting RSD before a jury of their peers.

    But even if defence litigators can keep RSD cases from reaching the sympathetic ears of a jury, Chipman noted, "there are naïve judges out there who want to believe in people's tales of woe."

    The principle dilemma for insurers in defending RSD claims is causation, Chipman observed. For example, do auto collisions directly result in injuries that manifest as RSD symptoms? Or is RSD a secondary byproduct of the injuries arising out of a collision? Or are RSD symptoms entirely unrelated to a claimant's auto injuries?

    Medical researchers themselves are not clear about RSD's origins. Citing medical texts, Chipman told his audience of claims professionals "there is no universally accepted theory to explain the genesis of RSD." According to one medical author Chipman quoted, RSD "may develop spontaneously."

    In his paper, Chipman quotes the definition of RSD - also known as 'Complex Regional Pain Syndrome' [CRPS] - advanced by Drs. Maria Wilson, Michael Stanton-Hicks and Norm Harden, who are cited as experts in the area.

    "CRPS describes the way of painful conditions that are characterized by continuing (spontaneous and/or evoked) regional pain but is seemingly disproportionate in time or degree to the usual course of any known trauma or other lesion. The pain is regional (not in a specific nerve territory or dermatome) and usually has a distal predominance of abnormal sensory, motor, sudomotor, vasomotor and/or trophic findings," the doctors say. "The syndrome shows variable progression over time."

    Symptoms of RSD may include burning pain, temporary changes to the temperature or colour of the skin, sweating and joint loss of functioning, to name a few.

    In one insurance case involving RSD, a judge was "brought to tears" when the plaintiff in the auto insurance case told the court about her RSD symptoms, Chipman said. Assuming the point of view of the insurance defence counsel, he added: "When that happens, you know your case isn't going very well."

    Teed v. Amero helped put RSD on the claims officers' legal map in 2001. In that case, Calvin Teed was talking to a farmer while lying on his back under his truck, trying to fasten chains to the wheels of a truck. A second truck arrived on the scene, and the farmer told the driver of the second truck that there was no room for him to proceed through the narrow space beside the truck. The second truck proceeded anyway, and drove over Teed's leg, severely injuring him.

    The court was satisfied that Teed had received almost every possible treatment available for RSD, with little result. General non-pecuniary damages were awarded in the amount of Cdn$150,000.

    Since then, the Nova Scotia Court of Appeal has made some observations about RSD in its 2007 Abbott v. Sharpe decision. In that decision, Tammy Murina Sharpe was a front seat passenger in a vehicle that was stopped in a line of traffic and rear-ended by a van behind it.

    Sharpe went to her local hospital complaining of discomfort on the left side of her neck, which radiated into her left shoulder and upper arm. She was given a soft collar and prescribed muscle relaxants.

    Eight months after the collision, and 29 physiotherapy treatments later, Sharpe reported hip pain and was subsequently diagnosed with RSD. A lower court awarded her Cdn$750,000, which the appellate court lowered to Cdn$625,000.

    The crucial question in this and other RSD cases is whether a causal link can be established between the pain associated with RSD and the motor vehicle collision. Given the lack of consensus about RSD within the medical community, many in the industry question whether a trial by a jury of non-medical experts is suitable for claims involving RSD. Chipman noted that in jury trials, "the mere mention of RSD ramps up the awards" to plaintiffs.

    Chipman's presentation included advice to insurers dealing with RSD cases, or other cases in which the medical origins of the symptoms are unclear.

    "The most important thing to remember when dealing with RSD is that there is relatively little known about its origin or treatment," Chipman's paper states. "As a result, most, if not all, of the evidence presented at trial comes from the testimony of the parties and the doctors who treat them.

    "The importance of using the right expert cannot be understated."

    Since RSD cases commonly rely on the credibility of the testimonials, insurers must prepare for the case with strong documentation, including reports and adjustments by independent medical examiners (IMEs).

    Definitely RSD cases should be "kept away from a jury," Chipman added.

    As far as documentation is concerned, insurers will have to make sure they get the opinion of an IME. If one IME says they cannot do the job, then quickly find one who can, Chipman recommended at the CICMA conference.

    The nature of the injury must be carefully documented, as well as the circumstances surrounding the original event. Also, Chipman says, since the credibility of the person suffering the pain is an issue, insurers should find any past employment, medical or even school records that might bear on the origins of the RSD symptoms being claimed.

    All efforts should be made to try mitigation arguments, Chipman advised.

    Click Here For The Original Article Online.


    Saturday, May 05, 2007

    Benefit for Madison girl April 30 at Wagon Wheel

    Benefit for Madison girl April 30 at Wagon Wheel
    Star Beacon


    Staff Writer

    MADISON TOWNSHIP - - The chance to help a fellow student led members of the Madison High School Fellowship of Christian Athletes to organize a fundraiser to help a junior fighting reflex sympathetic dystrophy.

    Erikka Elsbury, 17, was diagnosed with the rare disease five years ago when she was afflicted with extreme pain in her arm.

    "She went to a lot of doctors locally that were unfamiliar with the disease. She had several MRI's and a bone scan," said her mother, Linda . She was diagnosed seven weeks later with RSD and treatment was started.

    The disease is very painful and includes swelling of limbs.

    "We went to an orthopedic doctor at Cleveland Clinic and he immediately knew," Linda Elsbury said.

    A "nerve block" was administered that reduced the pain significantly for an extended period of time. "They kind of inject pain reliever into a sympathetic nerve," Erikka Elsbury said.

    "After I got the blocks I was able to move my hand. I was able to live a somewhat normal life. Three years later I twisted my right ankle and it came back there (in her leg)," Erikka Elsbury said.

    After another "blocker" she was able to continue with her life and even join the swim team. "In January I smashed the finger in my car and it came back," she said.

    For the last 2 1/2 months, she has been tutored at home and just returned to school last week.

    "I really just want to get the awareness out there. I know people who it took you to digging and they are worse off for it," Elsbury said.

    She said a support group on the Internet has been helpful in dealing with the painful disease.

    "It's nice to talk with other people who are going through the same thing you are doing," Elsbury said.

    Taylor Pniewski, one of the Fellowship of Christian Athletes advisers at Madison High School, said the dinner will be 5 to 9 p.m. April 30 at the Wagon Wheel in Madison Township with take out or eat in spaghetti dinners for $7.

    "They (fellow students) decided we should try and do something for her. She's been one of the core people in our group," he said.

    Click Here For The Original Article Online.


    Reflex Sympathetic Dystrophy Can Cause Constant Pain

    Reflex Sympathetic Dystrophy Can Cause Constant Pain

    RSD can cause patients constant pain. So what is RSD and is there relief?

    ((((( Click For News Video )))))


    Rebuilding Together team does just that for local homeowner

    Rebuilding Together team does just that for local homeowner

    With tears in her eyes, she stood in her demolished kitchen Friday, feeling thankful and blessed.

    Volunteers had ripped out the kitchen earlier in the day to prepare for a massive project at Lori Waldman-Szmagaj’s Farmington Hills home as part of the 19th annual National Rebuild Day. More volunteers, about 50 in all, were expected to converge on the home all day Saturday to remodel the kitchen, replace flooring, paint walls, rake the yard and do some landscaping.

    “It’s overwhelming,” said Waldman-Szmagaj, 41, a single mother of two daughters, ages 14 and 16. “I haven’t been able to keep up with any of this on my own.”

    Waldman-Szmagaj has a physical disability called Reflex Sympathetic Dystrophy, a nervous system disorder that leaves her in pain most of the time. The condition, which progressively worsens, was brought on following a car accident in 1994. She hasn’t been able to work since 1996 when she was placed on permanent disability from the medical field.

    Since then, she’s been resourceful in seeking assistance by way of programs, food stamps and the city of Farmington Hills community development program. She even realized she can get free Internet service through the Farmington Community Library.

    “I find programs all the time to help me,” said Waldman-Szmagaj, whose sole income source is Social Security disability payments. “I need wonderful people like these guys. It’s so wonderful because I’m so blessed with all of this stuff. I’m in pain — and so many people are willing to come in and lend a hand and do whatever they can.”

    The Rebuilding Together team working this weekend at her home is from Our Lady of Sorrows Catholic Church in Farmington. The group is about 60 percent youth and 40 percent adults, said Tim Nixon, a volunteer and co-site manager. A total of 85 volunteers from the Farmington church worked on Waldman-Szmagaj’s home and another home in the 10 Mile and Power Road area.
    This is the third year the Sorrows group has volunteered for the Rebuilding Together program. There are 15 local churches doing the same thing this weekend in Farmington, Farmington Hills and Southfield, said Bob McAllister, of Farmington, who is co-site manager with Nixon.

    “We try to promote it as a good, Christian service and for our kids to know they need to give something back to people in need,” said McAllister, whose wife Jeanne and daughters Kirsten, 17, and Megan, 14, are pitching in. “We’re trying to keep it as a youth group-sponsored program. For the adults, we’re leading kids to learn and also we’re doing a good service as well.”

    Waldman-Szmagaj was selected by Rebuilding Together and matched up with the Sorrows volunteers. McAllister said their group has people who have construction skills. The program allotted $1,500 per house and the group gathered donations of supplies and even carpet, kitchen flooring and a dishwasher.

    Waldman-Szmagaj was connected with Rebuilding Together by the city of Farmington Hills, which also arranged for her to get a new furnace, new windows and new siding on her 50-year-old home through a low-interest loan program.

    She said “there is no way” she could have afforded to fix up her home — a home she moved into 14 years ago.

    “My kids deserve a house,” she said. “I never had a steady house until I was 12 years old. I moved into this house and I said, ‘This is my house and I’m not going to move.’”

    For more information about the Rebuilding Together program, visit www.rebuildingtogether.org or call (800) REBHAB-9.

    sjenkins@hometownlife.com | (734) 953-2131

    Click Here For The Original Article Online.


    Friday, May 04, 2007

    DISABILITY RIGHTS: A small victory

    DISABILITY RIGHTS: A small victory

    By Yangkyoung Lee, Herald Staff Writer
    Published Monday, April 30, 2007

    Debra Ericson, a former internationally certified driver's license examiner, is no novice to bureau-


    But when she found herself "humiliated" and "treated like a second-class citizen" by some Amtrak employees she encountered between Grand Forks and Williston, N.D., she decided to take on the national corporation.

    It took more than two years, hundreds of hours on the phone and working with an attorney, but the woman, who sometimes has difficulty lifting her own purse because of a neurological disease that causes constant pains, moved the elephant a little bit.

    National Railroad Passenger Corp., aka Amtrak, and Ericson finally reached a settlement in March. It wasn't exactly what Ericson wanted, but she was satisfied and called it quits.

    "They are going to do one thing that I've always insisted during the litigation," Ericson said.

    What she really wanted was a sign.

    "Now, Amtrak will put up a sign at the Grand Forks Amtrak Station saying that Amtrak welcomes people with disabilities and will assist them with handling their luggage at the station upon request," Amtrak spokesman Cliff Black said.

    Big change

    This is a dramatic change, considering the lukewarm, if not cold, response she received from the company when she first filed her complaint in 2004.

    In a letter dated March 26, 2004, Amtrak wrote that the Grand Forks and Williston stations did not provide special assistance to passengers with disabilities.

    Ericson achieved something relatively rare, Black acknowledged.

    "I am not afraid of standing up for what I believe in," Ericson said. "And I believe that I deserve to keep my dignity intact."

    The signs already are set up at the station: one on the platform and the other in the depot.

    "I saw the sign yesterday through the window at the station," Ericson said, her voice shaken with emotion. "It was a beautiful sign."

    Mobility impaired

    Her face was smiling with victory, but her body seems to have been worn out after the long-term battle.

    Ericson has fibromyalgia and reflex sympathetic dystrophy; both are rare diseases that affect muscles, causing extreme pain and impairing mobility. Ericson has been officially disabled since 1996.

    "It sounds like a small thing, but this means really a lot to the people who need this kind of assistance and don't know whether that is available or not," said Faye Gibbens. She is a cofounder and chief program officer of North Dakota Association for the Disabled. "Amtrak is doing the right thing," Gibbens said. But it seems as if some of Amtrak's employees weren't doing the right thing when Ericson used its service in 2003.

    When Ericson called Amtrak to make a reservation to visit her daughter about two weeks ahead, she made four requests: accessible seating, assistance with her luggage at the station and assistance in boarding and disembarking from the train.

    "The agent said, 'Sure, we do this all the time. Don't worry about it,'" Ericson said.

    According to the legal document, Ericson's personal care attendant also called to make sure things will be all right. It was her second time using Amtrak, and last time she used it, she didn't get the quality of service that she was told she would get, Ericson said.

    According to the Amtrak Web site, people who require special assistance have to make reservations two weeks ahead, which Ericson did.

    On the scheduled day, Dec. 22, 2003, Ericson encountered a ticket agent who was so rude and treated her "like a second-class citizen," at the Grand Forks station, she said.

    Her pain-causing diseases can trick people's eyes. Ericson, 52, looks normal. The only apparent indication of her disability is her cane.

    The ticket agent told Ericson "it's not part of my job," and walked away when she asked for help with her bag, according to Ericson.

    She felt everybody's eyes on her, she said.

    "I felt so humiliated," Ericson said. The "rude" behaviors of Amtrak employees climaxed when two Amtrak employees "grabbed" her arms and lifted her "like a log" when she asked for a ramp to step on to board the train.

    According to the Federal Railroad Administration, which oversees Amtrak's civil rights compliance, including the Disabilities Act, she should have been provided with a ramp at the time.

    On her way back to Grand Forks, she broke into tears while she waited 30 minutes for a conductor to talk to the family who occupied the only seat with a leg extension in the car that should have been reserved for Ericson.

    That happened only after she endured "humiliation" while she was waiting for the conductor after a ticket-taker told her, "I don't want to deal with you. I will get the conductor to deal with you," in an irritated tone, Ericson said. By then, she couldn't move her legs because if she folds her legs even for 10 minutes, she cannot stand or move her legs for several hours, Ericson said.

    In the course of helping her stand up, the conductor, who told Ericson that he didn't know how to assist people with disabilities, "dropped" her.

    Formal complaintAfter this series of lower-than-standard services, Ericson filed a formal complaint, saying that Amtrak violated Americans with Disabilities Act (ADA) in January 2004, which led to her filing a lawsuit Dec. 19, 2005, almost two years after the incident.

    Over the course of her actions to make the company change its policies regarding the disabled, the Federal Railroad Administration reached a compliance agreement with Amtrak in 2005. Most of the agreement provisions answered the requests Ericson already made through her complaints and lawsuit.

    Under the agreement, Amtrak promised to provide two training courses: one for new employees and a refresher course for the current employees.

    The railroad agency informed Ericson of the agreement Aug. 25, 2006, and said all the services that she requested should have been provided.

    But Ericson wasn't satisfied with the invisible agreement that people cannot see, and most public are not aware of them. She wanted something solid.

    And finally, Amtrak gave in and gave Ericson the signs. In March, Amtrak and Ericson signed a settlement under which both parties agreed not to pursue the case if Amtrak put up signs on both the platform and in the depot at the Grand Forks station. Ericson also received a small amount of monetary compensation.

    "This is really big, and Deb doesn't even realize that," said Dale Boam, Ericson's Utah-based attorney who specializes in disability claims. "She fought for equality of access for the people with disabilities and made an amazing change."

    Amtrak still denies that Ericson made a special seating arrangement request when she made her reservation in 2003.

    But Cliff Black, Amtrak spokesperson, said the company will abide by the compliance agreement and the disabilities act. Amtrak sold 114,730 tickets in North Dakota in 2006. During the same year, the Grand Forks station sold 19,574 and Williston station sold 21,300.

    Click Here To See The Original Article Online.


    CNN Video...

    Video is from 2006 but we had just recently found it online:


    Thursday, May 03, 2007



    Punk groups to play benefit show in Belmar

    Posted by the Asbury Park Press on 04/20/07


    Shake it for a good cause this weekend as an alliance of local artists will join forces to bring you the rock.

    And the cupcakes.

    On Sunday, Calvary Baptist Church in Belmar will host an all-ages basement show and bake sale to benefit St. Benedict Catholic Church of Holmdel's "Kare for Kristin" charity, a fundraising effort aiding the family of Kristin Murray. She is a St. Benedict School graduate and current St. John Vianney High School sophomore who recently was diagnosed with Reflex Sympathetic Dystrophy Syndrome — also known as Complex Regional Pain Syndrome (CRPS), a chronic neurological syndrome caused by a malfunction of the body's nervous system, according to Mary Ann Blackburn of St. Benedict's Church.

    The event was organized by Sea Bright resident Miranda Taylor, and it will feature the punk-rock stylings of Full of Fancy, The Acid Creeps, Tonight We Dance, Glaciers, Screaming Females, Hunchback and The Ergs.

    "I teach at Perna Dance Center," said Taylor, guitarist/singer for Full of Fancy and the drummer/singer for Hunchback. "One day, Hedy (Perna), the owner, was telling us about this charity to raise money for a former student of hers who was really sick and undergoing these radical treatments that her family couldn't afford to pay for. So I thought, "Why not put on a benefit show to help?' "

    Taylor said a tremendous outpouring from people looking to contribute in any way they could was practically immediate, and getting the bands together play the show was simply a matter of rounding up a few close friends.

    "I told some people about what I wanted to do," Taylor said. "Next thing I know, 50 people were like, "I'll bake cupcakes!'

    "That's what neat about the scene — if that's what you want to call it. People really band together, really look out for each other," she added. "Everybody has been so nice and so helpful. That makes such a huge difference."

    Perna describes Taylor's efforts for the school and for Murray's family as "absolutely unbelievable."

    "Miranda is a truly unique individual," she said. "She's a real ballerina who rocks out with the band. Our students know about her being in a band, and because they're so impressionable at that age, that's something they can really look up to. It really brings a whole new dimension to their performing."

    The all-ages, alcohol-free show is from 2 to 8 p.m Sunday. Calvary Baptist Church is at 606 13th Ave. in Belmar. Tickets are $5 at the door.

    For more information or to make a donation, visit www.myspace.com/fulloffancy or www.pernadancecenter.com on the Web, or e-mail Mary Ann Blackburn at mablack@optonline.net.

    Click Here For The Original Article Online.


    Wednesday, May 02, 2007

    NFA softball pitcher Wolfe, post-injury, sets sights high

    NFA softball pitcher Wolfe, post-injury, sets sights high

    NFA's Wolfe bounces back strong after debilitating injury


    April 19, 2007

    She says she doesn't worry.

    But every time Gretchen Wolfe is hit with a softball, the Newburgh Free Academy senior pitcher thinks about it. Any time her right foot feels tingly, she thinks about it.

    About how even the slightest breeze would cause the stabbing pain in that right foot to flare up. How that pain kept her off a field for two years.

    That even though her doctor says the chances of another flare-up are minimal, it will always be with her.

    Wolfe is one of the 200,000 to 1.2 million Americans living with Rexflex Sympathetic Dystrophy Syndrome (RSDS): a chronic condition in which the body's sympathetic nervous system responds to a traumatic event — like an injury — by sending constant, abnormal pain signals to the brain.

    Wolfe's story begins on Oct. 20, 2003, about two months into her freshman volleyball season, when she broke her right kneecap diving for a ball.

    She says it didn't hurt that much; she wasn't even fitted for a cast.

    But then Wolfe's right foot began to turn blue and feel cold. Then there was the pain: "like a million knives stabbing my foot," she said.

    A week after she was hurt, Wolfe was diagnosed with RSDS. Wolfe underwent 13 surgical procedures over the next year to reset her nervous system. "They'd shut it down and start again," she said. She did physical therapy — 153 sessions, she kept count. She used crutches — she had to learn how to walk again.

    And she had to stay off the field. "For me to sit there and watch people play — it was so hard," she said.

    By June 2005, Wolfe thought she was ready to play again. She began to pitch for her travel softball team. Her foot began to ache, but she thought she could get through it.

    Then it turned blue again. The pain was back.

    "I was really scared after that," she said.

    Back to rehab. Wolfe finally got back on the softball field last spring. This time, she was back to stay. In her first game, she threw a perfect game against Washingtonville. "My leg felt perfect all year," she said.

    Now, she wants to pitch Newburgh to a Section 9 Class AA title before she graduates. When she heads to Division III Roanoke (Va.) College, she wants to study athletic training.

    She wants to help athletes manage and cure their pain. Pain she had to manage for two years.

    Pain she's reminded of with every softball that hits her body, and every twinge of her right foot.

    Click Here For The Original Article Online.


    Tuesday, May 01, 2007

    Comic Pain Relief 2007

    Comic Pain Relief 2007 is a night of comedy here in Tempe, Arizona on May 30, 2007.

    The event is titled Chronic Pain Relief 2007 and will be held at the Tempe Improv. We will also have brochures and other literature on different types of chronic pain including reflex sympathetic dystrophy. They are full of facts, tips, and loads of information on RSD.

    We are hosting the event to spread awareness and raise money for RSD. We will have a short introduction and presentation by the Chairman of the Power Of Pain Foundation, Jim Ingle, Sr., with a description and information about the charities involved in this project. Then the show will kick off with Marby Ingle. Marby is a comedian from Washington D.C. and is a family member of an RSD patient as well as a board member for the Power of Pain Foundation.

    The headlining comedian will be Jake Johannsen who is has his own show on Comedy Central. In addition, we have many sponsors from around the phoenix area who have donated tickets for patients who want to come, but do not have the funds.

    Tickets are $20. Our estimated attendance is 400. I would like to get your help in this project.

    First, we plan to have a video montage of, "faces of RSD" to be playing during the pre-event dinner. If you would email me your picture along with your name, state and how long you have had RSD, or if you are a family member of someone with RSD, I will be sure to include it. Please pass on the information about the Comic Pain Relief 2007 event along with my contact info, so that I can get as many pictures as possible.

    Second, let people know if you are in the Arizona area you can purchase tickets online at www.powerofpain.org or by calling 480-502-5818. If you want to come to the event and are coming from out of town, I can get you a really discounted price at the Resort Suites of Scottsdale (they are one of our sponsors).

    Third, all profits are being donated to the following: The RSDSA, American RSDHope, American Pain Foundation, Arizona Pain Initiative and Power of Pain Foundation. All of these are non-profit organizations that promote awareness and research for chronic pain and RSD. If you are interested in donating, helping, or have any questions, please let me know! My contact info is below.

    Please Note: The RSDSA has specifically asked for their portion of the funding to be applied to a PT/OT Training Program. The Power Of Pain Foundation has specifically asked for their portion of the funding to be applied to education and video projects for RSD patients, and health care workers. The Arizona Pain Initiative will use their portion of the money raised to supplement the Power Over Pain Chronic Pain awareness program for the public and professionals that was put together by the American Pain Foundation.

    Barby Ingle, Event Coordinator barby.ingle@gmail.com 480-502-5818 www.powerofpain.org powerofpainfoundation@gmail.com