Friday, July 27, 2007

Complex Regional Pain Syndrome Still Slow to Be Diagnosed in Children


Complex Regional Pain Syndrome Still Slow to Be Diagnosed in Children
CRPS, or complex regional pain syndrome, is a pain disorder that causes constant, intense pain in the arms and legs, along with problems with the blood vessels and sweat glands. It was identified as early as the American Civil War, but was though to affect mostly adults and rarely children. Doctor's don't yet know what causes CRPS or how best to treat it. They do realize that children do have the disorder more than previously thought.

This study reviewed the medical records of 20 children diagnosed with CRPS over a four-year period at one specific hospital. The researchers noted past history, family history, the time it took from onset of symptoms to diagnosis and the time it took for the symptoms to go away. They also noted the type of treatment the children received, the length of any hospital stay, and any replapes.

All the children received the same treatment: intensive physiotherapy, hydrotherapy (exercise in water), massage, medications for pain, and counseling. Often the analgesics, or pain medications were needed before the children could take part in their physiotherapy session. Thirteen children were treated with other medications such as amitriptyline and three received gabapentin because these medications have been found to work for some people with chronic pain. The counseling, or psychotherapy, was given to help the children learn how to cope with the pain and other stressful situations. Two families refused counseling for their children.

Those children who were admitted to the hospital were not seeing any improvement with their therapy or their pain had increased to the point that it was felt that the pain could be better controlled better in the hospital environment. All the children were followed until their symptoms had gone, only two children were lost to follow-up.

Of the 20 children, 18 were girls. All the children ranged in age from 8 to 16 years. The average onset of the symptoms in girls was around age 12 years and in boys, almost 9 years. In 17 children, the pain was in the legs, 15 complained of foot pain, one of ankle pain and one of knee pain. Half of these children reported the pain to be on the left side. The pain was in the arms for three children: two complained of it in the right wrist and hand, and one in the entire left arm.

Sixteen of the children said that they had hurt themselves before the symptoms began, but the injuries were minor from falls or sprains. Only one injury was a fracture.

All the children began complaining of pain that seemed out of proportion to the injury. Most also had swelling, one side was warmer to touch than the other, and the skin color changed as well.

The researchers found that it took an average of about 13 and a half weeks from the time that the children experienced their first symptoms to the time they were finally diagnosed. The children would have seen anywhere from one to six specialists in orthopedics, pediatrics, rheumatology, neurology, emergency, and family physicians.

Four of the children had relapses after being symptom-free for at least three months.

The study showed that there were differences between the adults who have CRPS and children with the same disease. In adults, the legs are not as affected as with the children, and in adults, there were more men than there were boys in the children.

The authors of the study concluded there was a concern about the length of time between when the patients presented with the symptoms and the final diagnosis. It has improved from a decade ago when the length of time was as long as a year, to three months at the time of this study. That being said, it still took six months for three of the children in the study to be diagnosed. This is particularly important because the undiagnosed children are suffering from the pain, and findings show that children who are treated within three months of developing the symptoms respond better to treatment.


References: Adrian K Low, MBBS, et al. Pediatric Complex Regional Pain Syndrome. In Journal of Pediatric Orthopaedics. July/August 2007. Vol. 27. No. 5. Pp. 567-572.




Click Here For The Original Article Online.





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Sunday, July 15, 2007



Injured Marine: 'I feel left behind'


By CHRIS ENGLISH
Bucks County Courier Times

In the medical books, RSD stands for reflex sympathetic dystrophy.

In Moke Kahalehoe’s book, it stands for H-E-L-L.

The Falls resident and U.S. Marine has been tortured by the painful and debilitating neurological disorder since soon after breaking his left ankle and tearing a deltoid ligament in late 2005 in a martial arts training exercise during basic training at Parris Island, S.C.

Now retired from the corps, Kahalehoe, 26, lives with his girlfriend, Amanda Santacroce, brother Kawika and other family members at the home of his aunt, Carol Lubinski, in the North Park section of Levittown in Falls.

Cared for by Santacroce, family and friends, Kahalehoe spends nearly every minute in bed or in a wheelchair. A vacuum machine that sucks out infection and injects oxygen is attached to his injured leg as he shuttles back and forth between hospitals and doctors offices. The cloud of pain is broken only slightly by daily doses of five different painkillers and muscle and nerve relaxers, including OxyContin and Valium.

"Normal things that people don’t even notice cause extreme pain for me," Kahalehoe said from his bed at Lubinski’s house. "When I can stand, I’ll get a shower, but I have to go four or five days between them because the water droplets hitting my skin are excruciating. I was just outside for a little while in the wheelchair, but I wasn’t out long because the wind was unbearable. Blankets and clothing on my skin are excruciating."

In addition to the physical torment, Kahalehoe has financial worries because of the astronomical and still climbing medical bills. Though 80 percent of the medical costs will be covered by the military insurance Tri-Care, the Veterans Administration has so far said no to covering the other 20 percent, said Santacroce, who plans to appeal.

Citing privacy laws, VA officials declined to comment on Kahalehoe’s case.

Though many of the bills haven’t come in yet, Santacroce estimates they will top $1 million, with tens of thousands or hundreds of thousands of dollars in costs potentially not covered by insurance.

Santacroce and others have organized a June 30 fundraising dinner for Kahalehoe at the Fraternal Order of Eagles in Fairless Hills. The Commerce Bank in Fairless Hills has set up a fund for those who want to help with Kahalehoe’s expenses.

Trip to Germany

Among those expenses will be a trip to Germany for a special medical treatment that involves pumping high doses of Ketamine into Kahalehoe’s body. Santacroce, who hopes her boyfriend can make the journey by November, said neither the treatment nor travel expenses are covered by insurance.

Ketamine, an anesthetic often used on animals, is also a recreational drug known as "Special K" on the street. It’s also one of the "date rape drugs," according to medical information.

"Moke’s chances for beating this are zero unless he gets some of these new treatments," said Dr. Robert Schwartzman, chairman of the neurology department at the Drexel University College of Medicine. He has taken on Kahalehoe’s case.

"The cure rate for people getting the Ketamine treatment is about 40 percent," Schwartzman said. "If we also follow that up with some other drug treatments, I think we can increase Moke’s chances for a cure to about 60 to 70 percent, but it’s by no means a slam dunk."

Schwartzman said he wants to concentrate on getting Kahalehoe better, not on past mistakes that might have been made in his treatment.

"We have to keep working at it," Schwartzman said. "There are new drugs coming down the line, and there are drugs he hasn’t had that are effective. Moke needs the treatment in Germany and new drugs after that, and it’s only fair he gets them. He deserves the best we can give him."

Schwartzman said RSD is always triggered by some injury, often one — as in Kahalehoe’s case — that hasn’t healed properly. The condition is less rare than it used to be, with about 50,000 new cases in the United States every year, he said.

If Kahalehoe is able to make the trip to Germany, he’ll be injected with doses of Ketamine in amounts not allowed in the U.S. The injections will induce a five- to seven-day coma that hopefully will calm down Kahalehoe’s nervous system and allow it to "reboot," Schwartzman said.

Santacroce estimates the cost of the treatment and trip at more than $100,000.

Before the injury, Kahalehoe, a 1999 Pennsbury High School graduate, was looking forward to making the Marines his career. He said his military specialty was going to be intelligence, and he likely would have served in Iraq working in that area and conducting interrogations of captured insurgents.

All that changed on Nov. 26, 2005, just 19 days after Kahalehoe enlisted in the Marines. While he was engaged in a martial arts exercise, another recruit kicked Kahalehoe’s leg and instead of hitting his calf or other soft tissue as recruits are instructed to do during training, he banged Kahalehoe’s ankle, causing a major fracture.

"It happened on a weekend and they didn’t have the medical staff on hand at that point," Kahalehoe said. "By the time I saw a podiatrist on Monday, the foot and leg were so swollen they couldn’t put it in a cast. They just like put on a splint and an ace bandage for three months and I think that is what caused all this [RSD]. It all stemmed from having it immobilized for so long."

The original injury still hasn’t healed properly and can’t be operated on because of the RSD, said Santacroce, a Long Island native who met Kahalehoe at Parris Island while they both were in the Marines. She said she was honorably discharged after being diagnosed with multiple sclerosis.

"I’m having my own issues with that with the VA because they claim it was a pre-existing condition, but my main concern right now is Moke," Santacroce said.

Citing privacy issues, Marine officials at Parris Island declined to comment on Kahalehoe’s injury. The Courier Times was unsuccessful in attempts to reach Marine officials familiar with martial arts training methods.

After undergoing various treatments while still in the Marines — none very successful — Kahalehoe retired in August. The time since then has been a painful whirlwind of emergency hospital visits, battles over insurance, worry about the future and the endless ramifications of dealing with RSD.

Troubles with VA

Santacroce said she can’t understand the reluctance of the military and VA to take care of one of its own.

"We’ve had to take him to hospitals for emergencies like respiratory distress and things like that, and the VA says we should have taken him to VA hospitals, but there wasn’t time," she said. "They also say things like they weren’t properly notified of the hospital visits. They won’t even pay for a special hospital bed at home or a special chair so Moke can sit down while taking a shower."

Santacroce said Kahalehoe recently started getting a VA disability payment of $590 a month. It will be re-evaluated in 18 months and isn’t nearly enough, considering Kahalehoe’s condition, she said.

Congressman Patrick Murphy, D-8, and U.S. Sen. Arlen Specter, R-Pa., are trying to help, Santacroce said.

"PFC Moke Kahalehoe was injured while serving our country and now he needs our help," Murphy, a veteran, said in a statement. "It is important that we rally around our troops and hopefully this event [June 30 fundraiser] will go a long way toward Moke’s recovery."

Specter’s press secretary, Kate Kelly, said it’s office policy not to comment on pending casework, but chief of staff Scott Hoeflich issued the following statement: "Mr. Kahalehoe’s issue was brought to the office’s attention in May. Senator Specter’s office is currently working with Mr. Kahalehoe and the Department of Veterans Affairs on the matter of his disability rating."

Kahalehoe’s father, Melvin, a native of Hawaii, lives in the islands but has visited his son twice since he’s been hurt and is doing what he can, Santacroce said. Kahalehoe’s mother, Joanne — Carol Lubinski’s sister — died about 12 years ago and had been divorced from Melvin for years before that, Lubinski said.

While attending Pennsbury schools, Moke Kahalehoe and his brother lived with a grandmother in another North Park house. Kahalehoe excelled in math, played baritone in the marching band, played classical and jazz piano and was an avid bowler with a 223 average.

After attending Drexel and Millersville universities with an eye toward a possible engineering career, Kahalehoe said he chose to follow his father and mother into the military.

"I don’t have any bitterness toward the Marine Corps," he said. "I will always respect them and what they do. I still wear Marine Corps sweatshirts, but they have this saying about leaving no one behind, and I feel left behind.

"They sent me home without any healing or any fixing, just left me to fend for myself for what happened in the Marine Corps," he said. "I just feel like they didn’t do what they could have done for me."

How to help

A dinner benefit to help pay medical and related expenses for Moke Kahalehoe will be held from 7 p.m. to midnight June 30 at the Fraternal Order of Eagles, 920 Trenton Road, Falls. Cost: $25 a person. For tickets or more information, call Kahalehoe’s girlfriend, Amanda Santacroce, or his aunt, Carol Lubinski, at 215-869-8097 or 215-547-3146. Tickets should be reserved by Monday, Santacroce said.

People can also help by contributing to a fund for Kahalehoe set up at Commerce Bank in Fairless Hills. To contribute, make checks payable to "Benefit for Moke Kahalehoe" and also indicate that on the envelope. Send donations to Commerce Bank, 624 S. Oxford Valley Road, Fairless Hills, PA 19030. Donations can also be made in person at the bank. The bank phone number is 215-946-2841.

Chris English can be reached at 215-949-4193 or cenglish@phillyBurbs.com.

Friday, July 06, 2007

DVD's Are Out Now!



CONFERENCE NOVEMBER 2006 DVD SET
The DVD's from the NOVEMBER 06 RSD/CRPS CHRONIC PAIN CONFERENCE HELD IN SOUTH PORTLAND, MAINE BY AMERICAN RSDHOPE are finally ready!
I know it took a lot longer than we had hoped but the end result is definitely worth it. The high-definition footage turned out beautifully and there is so much information packed into this 3 DVD set! And you won't believe the price!

FORWARD TOGETHER, THE JOURNEY CONTINUES ...

SET OF 3 DVD’S – ALL THREE MAIN SPEAKERS – NOW AVAILABLE ON www.RSDHope.org

EACH DVD IS 90-100 MINUTES LONG AND FEATURES ONE OF THE MAIN SPEAKERS FILMED IN HI-DEF.

WHO ARE THE SPEAKERS?

KEITH ORSINI - DOCTOR RONALD HARBUT – DOCTOR ALLAN CHINO

WHAT TOPICS ARE COVERED?

THREE POWERPOINT PRESENTATIONS INCLUDE ;

1) "KETAMINE AND RSD, WHAT DOES IT HOLD FOR YOU?"

2)"ACCEPTANCE AND COMMITTMENT THERAPY, LIVING BEYOND YOUR PAIN"

3) "RSD/CRPS -BIOMEDICAL, BIOBEHAVIORIAL, AND BEYOND"

We edited each DVD so that it could be viewed on its own. Whether you run a Support Group that wants to hold a series of workshop’s, a Clinic/Therapy Center that wants to educate your employees on the latest information available, or a patient that wants to share this information with your family; each DVD is a stand-alone unit with 90 to 100 minutes of hi-definition footage featuring one of the three speakers topics in its entirety.

SPECIAL PRICE FOR PATIENTS AND LOVED ONES – ONLY $25 PER SET OF 3! (includes shipping)

PHYSICIANS, OTHER MEDICAL PROFESSIONALS –- ONLY $50 PER SET OF 3! (includes shipping)

FOR ALL THE DETAILS ON EACH SPEAKERS PRESENTATION, BACKGROUND, AND ORDERING INFORMATION, ETC.;
1)VISIT THE AMERICAN RSDHOPE WEBSITE AND GO TO THE "WHAT'S NEW SECTION" or
2) LOOK FOR THE BIG BLUE BUTTON MARKED CONFERENCE DVD SET or
The first 75 sets ordered will come with a special bonus, see the website for details! Just a little something special.
Nearly 5 hours altogether on the three DVD's in three PowerPoint presentations!
WHY SO INEXPENSIVE ???
You can read more about this on our website but basically we wanted to try and get these DVD's into as many hands as possible. There is some great information here so we underwrote most of the cost ourselves and basically are only charging the cost of duplication, mailing, the costs of the discs, etc.
Please pass this information on to your websites, your listservs, bulletin boards, post it where ever you think other RSD patients, loved ones, or Medical professionals might benefit from these DVD's. Let your group members know these are available! Start talking with your group about setting up your first meeting for the first DVD!
If you are considering having the Low-Dose Ketamine treatment in the next few years, you need to get these DVD's. Doctor Harbut goes into great detail about the treatment and in his presentation explains in great detail everything about the treatment from past to present.
Check out the links above to read more about what is included on these DVD's!
Keith
American RSDHope
National Organization dedicated to raising RSD/CRPS Awareness
www.RSDHope.org

Another great article/interview on RSD Hope...





http://www.rsdhope.org/Showpage.asp?PAGE_ID=162&PGCT_ID=4266






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New Articles on RSD Hope's Website (thank you Keith!)


You can visit them on our website by clicking on the links below and/or visit the main website and look under the WHAT'S NEW SECTION or the MEDICAL ARTICLES SECTION of the website!

NY TIMES ARTICLE - WHEN IS A PAIN DOCTOR A DRUG PUSHER?
http://www.rsdhope.org/Showpage.asp?PAGE_ID=134&PGCT_ID=4260

NEWSWEEK - THE CHANGING SCIENCE OF PAIN
http://www.rsdhope.org/Showpage.asp?PAGE_ID=130&PGCT_ID=4215

HOW DOES THE BRAIN PROCESS PAIN?
http://www.rsdhope.org/Showpage.asp?PAGE_ID=137&PGCT_ID=4243

FAMILY BATTLES NERVE DISEASE
http://www.rsdhope.org/Showpage.asp?PAGE_ID=131&PGCT_ID=4165

IF RSD IS FOR LIFE, HOW WILL I GET THROUGH THIS? I AM ONLY 16?
http://www.rsdhope.org/Showpage.asp?PAGE_ID=143&PGCT_ID=4171

PATIENT GOES TO ZERO PAIN - LOW-DOSE KETAMINE INFUSION (scroll down to last article)
http://www.rsdhope.org/ShowPage.asp?page_id=161

FIBROMYALGIA: THE MISUNDERSTOOD DISEASE
http://www.rsdhope.org/Showpage.asp?PAGE_ID=132&PGCT_ID=4254

HOW DOES PAIN WORK, HOW DO DRUGS STOP IT?
http://www.rsdhope.org/Showpage.asp?PAGE_ID=134&PGCT_ID=4256

FUTURE OF MIGRAINE THERAPY
http://www.rsdhope.org/Showpage.asp?PAGE_ID=137

HOW ARE PAIN MANAGEMENT DOCTORS DIFFERENT FROM OTHER HEALTHCARE PROVIDERS?
http://www.rsdhope.org/Showpage.asp?PAGE_ID=138&PGCT_ID=4252

MAIN MEDICAL ARTICLES SECTION
http://www.rsdhope.org/ShowPage.asp?page_id=140


American RSDHope
National Organization dedicated to raising RSD/CRPS Awareness
www.RSDHope.org

Tuesday, July 03, 2007

Can Vitamin C Prevent Complex Regional Pain Syndrome in Patients with Wrist Fractures?




Can Vitamin C Prevent Complex Regional Pain Syndrome in Patients with Wrist Fractures?


A Randomized, Controlled, Multicenter Dose-Response Study

P.E. Zollinger, MD1, W.E. Tuinebreijer, MD, PhD, MSc, MA2, R.S. Breederveld, MD, PhD3 and R.W. Kreis, MD, PhD3

1 Department of Orthopaedic Surgery, Ziekenhuis Rivierenland, President Kennedylaan 1, 4002 WP Tiel, The Netherlands. E-mail address: PE.Zollinger@tiscali.nl
2 Relweg 59, 1949 EC Wijk aan Zee, The Netherlands
3 Departments of Surgery (R.S.B., R.W.K.) and Burn Wounds (R.W.K.), Red Cross Hospital, Vondellaan 13, 1942 LE Beverwijk, The Netherlands

Investigation performed at the Department of Surgery, Red Cross Hospital, Beverwijk, The Netherlands; the Department of Orthopaedics and Surgery, Haga Hospital (Leyenburg), The Hague, The Netherlands; and the Department of Orthopaedics and Surgery, Reinier de Graaf Group, Delft, The Netherlands

Disclosure: In support of their research for or preparation of this work, one or more of the authors received, in any one year, outside funding or grants in excess of $10,000 from Stichting Achmea Slachtoffer en Samenleving (SASS). Neither they nor a member of their immediate families received payments or other benefits or a commitment or agreement to provide such benefits from a commercial entity. No commercial entity paid or directed, or agreed to pay or direct, any benefits to any research fund, foundation, division, center, clinical practice, or other charitable or nonprofit organization with which the authors, or a member of their immediate families, are affiliated or associated.


Background: Complex regional pain syndrome type I is treated symptomatically. A protective effect of vitamin C (ascorbic acid) has been reported previously. A dose-response study was designed to evaluate its effect in patients with wrist fractures.

Methods: In a double-blind, prospective, multicenter trial, 416 patients with 427 wrist fractures were randomly allocated to treatment with placebo or treatment with 200, 500, or 1500 mg of vitamin C daily for fifty days. The effect of gender, age, fracture type, and cast-related complaints on the occurrence of complex regional pain syndrome was analyzed.

Results: Three hundred and seventeen patients with 328 fractures were randomized to receive vitamin C, and ninety-nine patients with ninety-nine fractures were randomized to receive a placebo. The prevalence of complex regional pain syndrome was 2.4% (eight of 328) in the vitamin C group and 10.1% (ten of ninety-nine) in the placebo group (p = 0.002); all of the affected patients were elderly women. Analysis of the different doses of vitamin C showed that the prevalence of complex regional pain syndrome was 4.2% (four of ninety-six) in the 200-mg group (relative risk, 0.41; 95% confidence interval, 0.13 to 1.27), 1.8% (two of 114) in the 500-mg group (relative risk, 0.17; 95% confidence interval, 0.04 to 0.77), and 1.7% (two of 118) in the 1500-mg group (relative risk, 0.17; 95% confidence interval, 0.04 to 0.75). Early cast-related complaints predicted the development of complex regional pain syndrome (relative risk, 5.35; 95% confidence interval, 2.13 to 13.42).

Conclusions: Vitamin C reduces the prevalence of complex regional pain syndrome after wrist fractures. A daily dose of 500 mg for fifty days is recommended.

Level of Evidence: Therapeutic Level I. See Instructions to Authors for a complete description of levels of evidence.





Click Here For The Original Article Online.




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Sunday, July 01, 2007

New therapy targets problem muscles, helps patients manage chronic pain



New therapy targets problem muscles, helps patients manage chronic pain

Meghan Murphy

July 1, 2007


Jaime Mowery convulsed and screeched when therapist Chris Denham lightly touched her abdomen. Mowery injured her feet seven years ago, but Denham barely touched them. Instead he tapped, flicked and pressed key points on her legs, stomach and neck.


After Denham diagnosed Mowery's problem muscles, he began therapy. He had Mowery raise her arms and resist him as he sporadically pushed them back. He said he's turning off muscles in deep spasm using a new therapy called Primal Reflex Relief Technique, which he demonstrated June 7 at an open house of the North Colorado Therapy Center.

Invented by John Iams, the technique is gaining popularity across the country for therapists looking to help patients with chronic pain.

When Denham first heard of the technique three years ago, he thought it sounded a little like voodoo. But he had patients who just didn't respond to his other techniques, so he attended a training session.

"There was always a group of chronic pain people I couldn't seem to get anywhere with," Denham said.

The first patient he used it on erased all of his skepticism. The woman had headaches, numbness and tingling in her limbs. But after only one visit she felt much better. After four visits, the patient no longer needed therapy.

Mowery's story is similar. She has reflex sympathetic dystrophy syndrome, which surfaced as chronic pain after she fractured her foot seven years ago. She could only limp about 100 yards without sitting down, until she began therapy with Denham. After the first visit, her pain was almost cut in half.

Denham not only offers treatment, but he gives his patients techniques to use at home. Mowery pulls on the hair behind her ears, and at night will stretch opposite arms and legs, looking up toward her hand, a move she said helps her feel more comfortable laying down. Using the home techniques, Mowery is managing her own pain and hasn't seen Denham in months.

Denham said he sees the same results using Primal Reflex Relief Technique in patient after patient. Three of his coworkers at the therapy center are also trained in the technique.

Although Denham said he doesn't know how the therapy works, the results are all he needs to continue using it on his patients.

Denham doesn't employ the technique on every patient, though, it's simply one wrench in his therapy toolbox. If a patient isn't responding, he tries something else.

But for some patients, the treatment is life changing.

"When it works, it's a blast. It's really cool," he said.

BREAKOUT

The North Colorado Therapy Center celebrated 10 years of service in May. For more information about the center, visit www.gci.org






Click Here For The Original Article Online.




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