Monthly Archives: July 2009

Complex Regional Pain Syndrome

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Local support group helps patients with RSD, reflex sympathetic dystrophy syndrome

Local support group helps patients with RSD, reflex sympathetic dystrophy syndrome

by Jennifer Wezensky | Special to the Kalamazoo Gazette

Thursday July 23, 2009, 10:39 AM

KALAMAZOO — When Colleen Westra was in a car accident in 2003, she suffered serious fractures in one of her feet, but they turned out to be just the beginning of her health problems.

The 52-year-old Parchment woman ended up with complex regional pain syndrome, also known as reflex sympathetic dystrophy syndrome (RSD), and now is on disability, unable to work and continually taking medication and undergoing treatment for debilitating pain and other symptoms.

The rare condition can be treated and even cured if caught early, said Dr. Matthew Kuiper, an osteopathic doctor who works as a pain management specialist with Southern Michigan Pain Consultants, in Portage, Marshall and St. Joseph. But it’s a tricky “diagnosis of exclusion” that doesn’t have easy medical tests to rely on, Kuiper said.

The syndrome is a nerve disorder that typically occurs after some sort of trauma or injury. It usually affects limbs and can even result from something as minor as an ankle sprain, a bump of an arm or a blood draw. The nerves become “hyperactive” and rewired for no apparent reason, Kuiper said.

Support group

A support group for those with complex regional pain syndrome, or reflex sympathetic dystrophy syndrome (RSD), will meet from 6 to 8 p.m. July 30, Aug. 12 and Aug. 26 at the Parchment Community Library, 401 S. Riverview Drive. For more information, call Colleen Westra at (269) 381-2283.

Westra’s case was quite advanced by the time it was diagnosed, and she will probably have to live with it the rest of her life, said Kuiper, who treats Westra with nerve blocks, spinal-cord stimulation and medication for nerve pain, along with antidepressants and opiates.

Westra also undergoes physical therapy for the severe burning pain in both of her feet. That’s another strange part of the syndrome, since only one of her feet was injured in the car accident.

The syndrome is somewhat rare in the general population, Kuiper said, but he treats quite a few RSD patients in his practice.

“We don’t really understand why that happens,” he said. “It’s really a problem more of the central nervous system than the peripheral nervous system. It’s more a problem of the spinal cord, more so than of the nerves in the limbs themselves.”

Westra has launched an area support group that meets biweekly at the Parchment Community Library. Ten people attended the first meeting, which included both RSD patients and their family and friends. She said that patients with RSD often feel isolated and misunderstood, as even family members sometimes do not grasp the seriousness of the physical and psychological symptoms.

Westra, a former traveling registered nurse who was making a six-figure income, said that the illness has been devastating to her life.

“The pain and symptoms can be different from day to day,” she said. “It makes it so that you can’t plan anything because you don’t know what your pain is going to be.”

The use of narcotics to treat the pain left her with a severe case of sleep apnea. “It’s like a vicious cycle sometimes,” she said.

Support-group participant Janet Guiles, 42, of Portage, was diagnosed with RSD in 2006, but physicians believe that her illness dates back to 2003. It began with knee and foot pain. She is largely confined to her home, and when she does go out, she uses a walker. The most difficult part has been seeing the impact of her illness on her family, including her husband and two teens.

“It’s very hard to go through, especially when you have kids in the home,” said Guiles, who has other health problems — fibromyalgia, endometriosis and fibroids. “It’s something that’s just horrible. I don’t wish it on anybody. It will never go away.”

Sylvia Sanchez, 43, of Mattawan, was diagnosed with the syndrome last October after a previous work injury.

Now Sanchez suffers from severe pain in her right arm and hand. She is on heavy pain medication that leaves her unable to function normally, she said. She can’t work, drive, dress herself or perform many basic daily functions. And because she can’t work and has yet to receive disability benefits, she has lost her home and her car.

“The pain is just so miserable,” said Sanchez, who has also attended the support group. “I wouldn’t wish this on my worst enemy. This has taken a lot from me. It really has. I am so depressed. It really takes a toll on your life.”

Click Here For The Original Article Online.


Maximus makes it easy for Jo

Maximus makes it easy for Jo

Fran Cleland

July 6, 2009

A STALLION noted for his temperament and good looks heads for New Zealand this month to hopefully become the mount for a leading disabled dressage rider at the next World Equestrian Games.

Maximus, a bay 16.2hh Warmblood stallion owned by Norm Clark of Tatura, has competed successfully in dressage and showjumping.

He will be leased in New Zealand to Jo Jackson, an ex-patriate Great Britain winner of three gold medals in Paralympics grade IV, three gold medals in world Para Equestrian championships Grade IV and winner of the NZ Para Equestrian Championships grade IV in 2007 and 2008.

Jo is now a permanent resident of New Zealand.

She hopes to qualify the big horse for next year’s World Equestrian Games.

Jo rode Norm Clark’s Welsh Cob stallion Barnon Imperial Jack at Riding for the Disabled Australian championships in 2008.

She also rode Maximus on a recent visit to Tatura and believes he fills all the criteria for a Para Olympic champion dressage horse.

Jo rides with one artificial hand and also suffers from the crippling Complex Regional Pain Syndrome condition which means she has a constant tingling pain through her entire body.

Her coach, NZ Para trainer Kate Honour, said Maximus was perfect for the job. “He’s a high-quality dressage horse, which is hard to find, so we have high hopes for the pair,” she said.

Norm Clark said he would be sorry to see him go.

“In New Zealand he will stand at stud as well as competing for Jo, and if he makes the New Zealand team for Kentucky and the London Olympics in 2012 it will be a real thrill for all of us.”

Click Here For The Original Article Online.


Woman is facing chronic disease by creating awareness

Woman is facing chronic disease by creating awareness

Sets up Facebook account;

wants emails sent to ‘The Oprah Winfrey Show’ on July 8

NORTH BRUNSWICK — In 1996, Christine Ortega had hundreds of her family and friends nominate her uncle, who had been diagnosed with reflex sympathetic dystrophy (RSD), to carry the torch in the Olympics, via a contest on a local radio station.

Hoping she could get him enough press coverage so that he could share his story about this not-very-well-known chronic regional pain syndrome, which is a disease of the nervous system, she succeeded in having him tell his story on NBC News.

Although he could not carry the torch, Ortega went in his place, carrying the Olympic symbol for eight-tenths of a mile through Philadelphia.

Ironically, Ortega now is trying to promote her own story about RSD after being diagnosed this year with the disease. In order to do so, she has set up a Facebook page — “A Plea to Oprah for RSD … We Need Your Help!!!!” — to try to acquire enough support so that talk show host Oprah Winfrey will discuss the topic on her show.

“Who better than Oprah to get the word out on something, because she reaches people worldwide,” Ortega said.

The former North Brunswick resident began recognizing her own symptoms in January. On Jan. 20, the 37-year-old slipped and fell on ice and fell flat on her back, but thought she was experiencing normal muscle aches. Two days later, she slipped on a movie ticket left on the staircase, and again fell flat.

But she didn’t have much cause for concern until about a week later, when she banged the same leg she had injured earlier into a bed frame and “it felt like a hot iron was searing my skin” — a similar description given by her uncle, who said he feels like he is in a vat of hot burning oil and can’t get out.

She went to her doctor, who sent her to an orthopedist, who diagnosed her with RSD. She was prescribed oral steroids and physical therapy.

In April she went to an RSD specialist, but she said the disease has very few specialists, and those who do treat patients affected by the chronic pain that is caused by overstimulation of sensory nerve fibers may not have appointments available for years.

Although Ortega was able to secure an appointment due to a cancellation, her doctor moved to Ohio, and a Philadelphia doctor said he could not see her until 2011.

“So many people feel helpless because they can’t get a doctor for a long time or they can’t find a specialist,” she said.

In the meantime, the North Brunswick Township High School graduate is continuing with anti-seizure medication to help improve her circulation and can use muscle relaxers as needed.

She said it hurts to do the dishes, play with her 5-year-old twins and step on the gas pedal while driving. By the end of the day, it can hurt to turn her head, and if she overexerts herself, it can be difficult getting out of bed the next morning.

“It has completely changed my life,” the Cherry Hill resident said. “With this disease, moving is imperative. Not moving around at all can cause limbs to stiffen up and can cause dystrophy.

Moving too much can be painful.”

Now, Ortega is hoping that on July 8, hundreds of people will send emails to Oprah so that so many emails on one given day will make an impact.

She said that even though millions of Americans are affected by RSD, misdiagnoses are common, and late diagnosis leads to the disease spreading quickly to other parts of the body.

“The theory [is] if enough people email Oprah on one day, her producers can’t ignore this outcry for awareness,” Ortega said. “I want as many people in the world to know about it.”

The link to Ortega’s Facebook page is oup.php?gid=113710996342&ref=ts.

Anyone who wishes to help is asked to log on to Oprah’s website,, on July 8 and at the bottom of the page click on “Contact Us,” join the website, and then click on “Send us your show suggestions” to send a general email using the title “A Plea for RSD Awareness.”

Contact Jennifer Amato at

Click Here For The Original Article Online.


Three women file lawsuits after crash at Plant City police motorcycle demonstration

Three women file lawsuits after crash at Plant City police motorcycle demonstration

By Jessica Vander Velde, Times Staff Writer
In Print: Friday, July 3, 2009

TAMPA — Three women injured after a Plant City police motorcycle careened into the bleachers where they were sitting filed lawsuits Thursday, alleging they should have been warned of the dangers at the law enforcement demonstration.

They’re each suing the city and the Plant City Chamber of Commerce. All are seeking compensation for their medical bills and losses.

On Nov. 18, the three women were among a group from the Plant City Chamber of Commerce’s leadership class that was in the bleachers when Officer Chad Rader gave a motorcycle demonstration.

A crash report states that another officer clocked Rader at 37 mph as he rode toward the bleachers. He applied the brakes, but the front wheel locked and he skidded, the report stated. He slammed into the audience.

Lynn Connor and Pamela Knight, both of Plant City, and Charity Freeman of Valrico were taken to a hospital.

Connor seemed to suffer the most extensive injuries, remaining in the hospital for a week. She underwent several surgeries on her right leg.

Knight was released with stitches and a boot for her left foot but readmitted when she complained of intense pain.

Freeman’s left knee was bandaged and she was released the same day, according to doctors’ reports given to Plant City’s attorney, Tom Scarritt.

However, recent developments indicate that all three may have suffered much greater injuries than they initially reported.

Connor was readmitted to the hospital last week with an infection she says is related to the accident. She says doctors also say she has complex regional pain syndrome, a chronic disorder diagnosis that is controversial in the medical community.

Connor, owner of Tip to Toe Day Spa & Gifts in Plant City, used to lead local events, but she says it has been tough trying to get back to her busy lifestyle.

“It was a blow, the whole thing, trying to learn to live in the new limits of my injury,” she said from the hospital last week.

According to a medical claim filed June 10 with Scarritt, Freeman complained of pain in her eye three weeks after being injured, and she said she recalled having migraines and nausea after the accident. The claim states she underwent brain surgery relating to these issues Feb. 16, Scarritt said.

Knight’s claim, filed June 5, states she has undergone another surgery on her right ankle.

Attempts to reach Freeman and Knight were unsuccessful. A message left with chamber president Marion Smith was unreturned.

Scarritt said the city hoped to go to mediation to settle the issue, but when he got the claims, he said he realized they’d most likely have to go to court.

Times staff writer Victoria Bekiempis and researcher John Martin contributed to this report.

Click Here For The Original Article Online.


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