Wednesday, June 29, 2005

Easing life's burdens


Dr. Gretchen Wienecke & Dr. Johnny Roy
Originally uploaded by rsdscrpsnews.

Easing life's burdens

Wednesday, June 29, 2005 10:36 AM CDT

JAMES COBURN

The Edmond Sun

Patients sometimes cry when Dr. Gretchen Wienecke listens to their concerns and tells them she believes their accounts of pain.

"They'll tell me, 'Nobody believes me that I have pain,'" said Wienecke, an OU Physician on staff at Edmond Medical Center with a focus on pain management. "To help them to some degree is pretty gratifying."

She has an office in the Edmond Regional Medical Building and conducts procedures in the hospital. Her residency in anesthesia was completed at Tufts University Medical School in 1994. Then she entered private practice in South Dakota for a few years before moving to Oklahoma to further her education by becoming board certified in pain management in 1998.

Pain management is a marriage of interests for Wienecke. She gets to place needles for injections of anesthesia while overlapping in neurology.

"My dad was a psychiatrist, there's a lot of psychiatry in pain management and a lot of neurology."

Bringing patients comfort and relief is a personal reward.

Many of her patients come to her after enduring intense pain for several years without successful medical intervention, Wienecke explained.

Most frequently, Wienecke alleviates the painful symptoms of pinched nerves due a herniated disc or the narrowing of the lumbar spinal canal, a condition known as spinal stenosis.

"Nobody has seemed to be able to do anything," she said of their past surgeries.

"There are very few cures so it's frustrating also because I hardly ever see someone that gets 100 percent relief of their pain."

Epidural steroid injections are common means of treating back pain due to a bulging disc or spinal stenosis. A small bit of steroid is inserted to calm inflammation anywhere in the epidural space from the lower back to top of the neck.

Periodic injections also can help numb arthritic pain in back joints.

"We usually do it again to make sure they really and truly are getting relief because there's a big placebo effect where you can stick a needle in anywhere and they'll say it's gone," she said.

"If you do it twice and they get pretty good relief, then we can proceed to something where we try to destroy that nerve."

Complex regional pain syndrome is often associated with an injury. Patients complain of burning sensations after their symptoms have healed that are worse than the initial injury.

To alleviate this, a sympathectomy will block the nerves associated with pain without any numbness.

Invasive pain relief procedure include implanting tiny, electrical units to stimulate the spinal cord. The devices are implanted near the spinal cord to produce a tingling in the legs or arms.

"What it tends to do is block the pain signal," Wienecke said. "The spinal cord is so busy sending the tingling signals that it blocks out the pain signals from getting to the brain. It doesn't fix anything,"

Also, intrathecal pumps can provide prescribed amounts of morphine or other drugs for pain treatment.

A new drug made from killer sea snail venom is beginning to be used with the intrathecal pumps.

"I was actually part of the big (drug) trial (as a researcher) in Tulsa several years ago and it has just got FDA approval," she said. "It looks like it's going to help."

The future of pain relief beckons with more procedures done in a less invasive manner than what has been used.

Treatment is already available for compression fractures that elderly people often get. A needle can be injected into a bone, injecting bone cement.

"That's gotten some pretty good reports on it so far," Wienecke said.

She also expects greater demand for pain relief as the baby boom generation ages.

Seventy-six million people born between 1946 and 1964 are approaching old age in the United States.

In eight years, the oldest of the baby boom generation will be 67 years old.

"More and more arthritis, especially, we will see as the baby boomers age," Wienecke said.

Meanwhile, Wienecke enjoys her practice at Edmond Medical Center.

For a physician, EMC makes a physician's practice "very easy," she said.

"The staff here is very attuned to patient care," she added.

"My patients that have been to several different places often comment on how nice it up here. ... It's very peaceful. There's not a lot of hub-bub and commotion."

(Features Editor James Coburn may be reached via e-mail at jcoburn@edmond sun.com.)


For the original story online, Click Here: http://www.edmondsun.com/articles/2005/06/29/news/news02.txt

Monday, June 27, 2005

Magnetic healing powers


Magnetic Molecular Energizing
Originally uploaded by rsdscrpsnews.

Johnstown boy in Hanover for innovative therapy to treat cerebran palsy.

By MELODY ASPER
Evening Sun Correspondent

Until he was 4, Maxwell Orr's cerebral palsy seemed more of an inconvenience than a handicap. With frequent medical treatments, the Johnstown boy, now 7, could even walk with some assistance.

Then a severe respiratory infection sent him into cardiac arrest. Emergency personnel were able to restart his heart, but a stroke severely injured his brain.

For three years, Max was in a near-vegetative state.

His parents, James and Laura Orr, resigned themselves to finding treatments to help their son.

A barrage of home therapies improved his awareness slightly and there were slight movements in his arms and legs.

Then the Orrs heard about electromagnetic stimulation of the brain, a yet-unproven therapy whose proponents say it works almost like magic.

The therapy, called Magnetic Molecular Energizing, is being tried in just six places in the United States, including the Advanced Magnetic Research Institute in Hanover, owned by Dr. Trent Nichols Jr.

Max began his first sessions in April and soon will conclude nearly 450 hours of treatments for as long as 20 hours at a time. Although Max still breathes through a trachea tube and needs a feeding tube to eat, there have been highly emotional successes.

"He's thriving now. Physically and neurologically, he is recovering," said James Orr. "There's a long way to go, but it's been nothing short of a miracle."

Donna Farabaugh, one of the team of nurses that attends to Max 24 hours a day, said the boy can turn his head from side to side. He can now see things up to four feet away, when previously his sight was limited to just 18 inches.

"Before Max came here, he couldn't move his hands or arms. Now, he can move his hand and pet his stuffed animals. He even moves his hand from one animal to the other," she said.

With Farabaugh's encouragement, Max pushes the button of a plastic turtle with his little hand, making the toy's beads whir and buzz. The boy's face visibly brightens.

Nichols, who has treated more than 1,000 patients with MME for a wide variety of ailments, said he's not surprised at Max's improvement. A recent study showed that 41 of 45 cerebral palsy patients had dramatic improvements, Nichols said.

MME treatments still do not have FDA approval, but Nichols' work is part of a study being conducted by the Institutional Review Board. In this way, Nichols and other researchers are able to treat patients and then submit their data to the FDA, which is continuing to evaluate MME treatments.

"It's important to realize that we still aren't sure why it works, just that it does work in a lot of cases," said Nichols. "This is the future of medicine."

Working with the same type of energy as an MRI (magnetic resonance imaging), MME generates a magnetic field, which increases the speed of electron movement in cells. Nichols said it acts as a catalyst, which can trigger repair and regeneration of damaged nerves, blood vessels, bones and other body tissues.

MME uses a powerful five-ton air-cooled electromagnet placed above and below a bed.

During treatment, the patient just lies on the bed and can talk, watch television, read or sleep. Many patients feel an immediate relief from pain, said Nichols.

Generally, patients feel no other sensation except for a slight tingling or glowing, he said, which could be a result of the healing process beginning.

Nichols came to Hanover 27 years ago when he was recruited by Hanover Hospital as a doctor specializing in digestive disorders. His Magnetic Research Institute is housed next door to his gastroenterology practice at the Eichelberger Professional Building on Stock Street.

Nichols said he became interested in magnetic research in 1986 after he broke his leg in eight places in a bicycle accident. After being in traction for 99 days, Nichols started looking for something that would ease the pain and encourage his leg to heal.

"That was my first glimpse of magnetics, but after just a few treatments, I knew this was something really amazing," Nichols said. "My pain decreased dramatically and my bones began to knit much faster."

A pilot study done by Nichols and other doctors suggests several major applications for the therapy, including wound healing, tissue regeneration, immune-system stimulation, treatment of osteoarthritis, bone repair, electro-acupuncture and nerve stimulation.

He said doctors are seeing promising results on patients with cerebral palsy, multiple sclerosis, Parkinson's disease, post-stroke impairment, autism, osteoarthritis, herniated disc disease, avascular necrosis of the hip, reflex sympathetic dystrophy, fibromyalgia, cardiomyopathy, liver disease, Lyme disease, sports injuries and even - to a limited extent - Alzheimer's disease.

Nichols said that all the studies being done have shown no adverse side effects except for an occasional temporary headache, dizziness or nausea. Also, treatments have never been shown to make any existing problems worse.

Nichols' wife and institute co-owner Sharon Nichols said the only downside she can see is that the treatments aren't covered by insurance because they aren't fully recognized by the FDA. That means that the $50 per hour must be paid by the patient's families or through community support.

In Max's case, the whole area around Johnstown has worked together, raising the thousands of dollars for treatments and nursing care.

"What is needed right now is a lot of additional funding so that more people that need it can benefit from the MME," said Sharon Nichols. "There are so many children out there like Max who could be helped. They don't deserve to be locked in the bodies that they have been given."

ABOUT MAGNET THERAPY

Many civilizations throughout history have used magnets to treat illness. Ancient Egyptian priests and the fourth century Greek physician Hippocrates documented the use of magnets. The 15th century Swiss physician and chemist Paracelsus hypothesized that magnets may attract diseases out of the body.

In modern times, magnetic fields play an important role in Western medicine. For example, they are used in magnetic resonance imaging.

Some practitioners have theorized that magnet therapy may improve circulation, increase blood oxygen, alkalinize bodily fluids, decrease deposition of toxic materials in blood vessel walls (such as cholesterol plaques) or relax blood vessels through effects on cellular calcium channels. Other theories describe altered nerve impulses, reduced edema or fluid retention, increased endorphins, muscle relaxation, cell membrane effects or stimulation of acupoints. Some traditional Chinese medicine practitioners suggest that magnets may affect patterns of flow of the body's life force, known as chi. None of these theories has been adequately assessed by scientific research.

Magnet therapy has been suggested for many health conditions. Available research supports the use of pulsed electromagnetic fields to improve the healing of some fractures, although this technique is not clearly superior to other approaches such as bone grafting. Studies of other medical uses of static magnets or pulsed electromagnetic fields are not conclusive.

Anecdotally, magnets may cause dizziness or nausea or may prolong wound healing or bleeding. Some practitioners discourage the use of magnet therapy during pregnancy or in people with myasthenia gravis or bleeding disorders. Scientific evidence is lacking in these areas.

Magnet therapy is not advised as the sole treatment for potentially severe medical conditions and should not delay diagnosis or treatment with more proven methods. Patients are advised to discuss magnet therapy with a qualified health care provider before starting treatment.

Do not rely on magnet therapy alone to treat potentially dangerous medical conditions. Speak with your health care provider if you are considering the use of magnet therapy.

This information is taken from Aetna's InteliHealth Web site and was reviewed by the Faculty of the Harvard Medical School. For more information, go to www.intelihealth.com and search the site for "magnet therapy." Then click on "document results."

For the original article online please click here: http://www.eveningsun.com/Stories/0,1413,140~9954~2940963,00.html

Saturday, June 25, 2005

A tough decision


The Sanford Herald
Originally uploaded by rsdscrpsnews.

A tough decision

By GORDON ANDERSON

SANFORD - When Kim Butts started as Lee County's elections director in September 1988, she said the elections office was "in a vault at the register of deeds office."

"We had room for one table and maybe two people," said Butts, who retired from her post last week. "We've come a long way and I'm proud of our record."

Butts retired because over the last six months she's been suffering from reflex sympathetic dystrophy (RSD), a rare nerve disorder that's caused her lingering pain in her left leg.

"(RSD) is brought on by a trauma of some sort, and it can be as little as having your finger pricked or as big as a surgery," Butts said. "That's what we think happened to me. I had surgery in December."

Butts said that immediately after waking up from that surgery, she knew something was wrong.

"I had no control over my left leg. It was swollen, and my foot was turning red," she said. "That pain was unbelievable. Even now it feels like I have my foot in a bucket of white hot coals."

Butts said the pain has stuck with her over the last several months, and was the deciding factor in her retirement.

"It's taken me six months to come to this decision," she said. "And it was such a hard decision. I haven't even been down (to the elections office) to get all of my things."

"But it wasn't fair to (then-Deputy Elections Director) Nancy Kimble, it wasn't fair to the board of elections and it wasn't fair to the people of Lee County," she continued. "So I stepped down."

Despite the hard decision Butts had to make, and the lingering pain of her condition - which she described as "a progressive disease with no known cure" - Butts said she is facing things with her head up.

"Sure, there are days when I've sat here and cried - but I'm not going to do a lot of that. I'm not that kind of person," she said. "I'm not giving up."

Looking back at her tenure as elections director, Butts said the most gratifying thing was "working with the people in Lee County. The employees of this county really rallied around me (when I got sick) like you wouldn't believe.

"Someone once told me that they never knew which political party I belonged to, because I worked for both parties equally," she said. "That's probably the highest compliment I've ever been given."

For the original article online, Click here: http://www.sanfordherald.com/articles/2005/06/25/news/news01.txt

Wednesday, June 22, 2005

The Providence Journal

For the moment by Rita Lussier:

Their searing pain is compounded by insufferable disbelief

01:00 AM EDT on Wednesday, June 22, 2005

Sitting in her kitchen in Johnston, Cheryl Zanni told me it all started with numbness in her right shoulder. That was back in 1997 when she was waitressing at Mohegan Sun. No big deal, right? Bursitis, perhaps. Nothing that a shot of cortisone wouldn't cure. That's what Cheryl thought, too. Until the pain started growing and spreading, slowly trying to take over her body, her mind, even her life.

Kathleen Burkinshaw, who lives 20 minutes or so away in Harrisville, told me a similar story. Her case began four years ago with a blood clot in her left leg. A few months later, she told me, the pain was still there. In fact, it was worse.

It's difficult to imagine the life the two women described to me, even though Cheryl is only 47 and Kathleen 36. Crawling out of bed every morning and wondering what the pain will be like today. Will it be numbness in your shoulder? Pins and needles in your leg? Or will it be a particularly terrible day, when the pain flares up, burning red, burning hot, stabbing you and stinging you until the tears start to flow?

After hearing their stories, I've tried to put myself in their place. But it isn't easy. Everything is so hard. Little things. Simple things. Can you go grocery shopping? Will the pain hold off long enough for you to make it to the supermarket? Will you make it back? And if you do, will you be able to get the bags out of the car, the groceries out of the bags or will you collapse on the couch and just leave them there, the pain having sucked every last ounce of energy from your body? Not to speak of your soul.

And they went on to tell of nerve endings so sensitive that there's no way you can endure air conditioning, that a sheet brushing up against your leg or your child reaching for your hand will cause you to flinch in agony. How could life be any harder?

It could. That's because the diagnosis for each of these women is a neurological disorder called RSD that's both rare and controversial.

"The problem with pain in general is that it's subjective," says Dr. James Gilchrist, a neurologist at Rhode Island Hospital and Professor of Neurology at Brown University Medical School. "RSD is not a particularly well-defined syndrome. Patients can present in a lot of different ways, with a variety of symptoms, a variety of presumed inciting incidents. In the medical and academic communities, anything that can't be defined well becomes murky."

And murky is a good word to describe the controversy that seems to swirl around RSD, despite the fact that it was discovered more than 150 years ago. Even the name, Reflex Sympathetic Dystrophy, Dr. Gilchrist says, is not quite right. That's why the condition more recently has been referred to as Complex Regional Pain Syndrome (CRPS).

No matter what you call it, the phantom nature of the pain makes it difficult to pin down. What's more, in a tightly managed healthcare environment in which doctors can be penalized for prescribing unnecessary medications and painkiller addicts are relentless in their pursuit of those prescriptions, patients with chronic and seemingly inexplicable pain are often treated with suspicion.

According to Dr. Richard A. Rubenstein, a board-certified neurologist in California, RSD is not a disease but a symptom complex that is often diagnosed in error and frequently overused as a diagnosis. "There's often a very prominent and untreated psychological component to RSD," he says, which might explain why it's sometimes referred to as The Crazies.

Of course, this is nothing new to Cheryl and Kathleen. They've heard it all before. The pain isn't real. It's all in your head.

Kathleen's response? "If having RSD is a new definition for crazy, then I choose to equate it to working like crazy to research various treatments, pushing myself like crazy to do the physical therapy exercises no matter how much pain it causes so the limb won't atrophy, and advocating like crazy so people can recognize the symptoms."

Speaking of advocates, Dr. Pradeep Chopra, an assistant professor at Brown University Medical School and Boston Medical Center, has a lot of empathy for RSD patients. As the director of the Pain Management Center in Pawtucket, he sees about one a week. It's important, he says, to get the word out that if pain persists after an injury -- even a minor one -- it could be RSD. And the earlier it's diagnosed, the better.

And as Cheryl and Kathleen would tell you, there's nothing crazy about that.

Rita Lussier can be reached at ReetsAL [at] aol.com or by mail c/o Features Department, The Providence Journal, 75 Fountain Street, Providence, RI 02902.


For the Original Story Online Click Here: http://www.projo.com/yourlife/content/projo_20050622_rita22.1d3f8ca.html

Friday, June 17, 2005

Lawyers seeing more cases of mysterious illness RSD


Tucson Citizen
Originally uploaded by rsdscrpsnews.


Lawyers seeing more cases of mysterious illness RSD

A.J. FLICK
Tucson Citizen


Barbara Glist's words are printed on this page in ink, but her reality is much less permanent.

"My life is in pencil," the 52-year-old Tucson woman said. "Everything is tentative."

Four years ago, Glist began showing signs of a chronic pain illness that was first described in 1864 but has yet to be understood.

Doctors can't even agree on a name for the ailment, which attacks limbs and can be triggered by trauma, nerve injury or, as in Glist's case, cancer treatment.

Glist's treatment came after she filed a medical malpractice suit against the Veterans Administration.

Glist spoke yesterday with a panel of medical experts, including Tucson neurologist Dr. John LaWall, at a seminar on reflex sympathetic dystrophy at the State Bar of Arizona's annual convention at The Westin La Paloma Resort & Spa.

The term "reflex sympathetic dystrophy," or RSD, was coined in 1946 but took on variations over the years.

In 1993, a group of pain experts named it "complex regional pain syndrome," or CRPS, but several years later disputed their own findings.

All Glist knows is that she suffers incredible pain abated only by ingesting 30 milligrams of morphine four times each day with about 15 other medications.

"You know it's bad when the doctor says, 'Is there anything that can make you feel better?' and you say, 'Yes, a .357,'" Glist said.

While RSD might not be a familiar acronym to many people, many attorneys are confronting the mysterious illness.

"Years ago, I might have had one or two clients with RSD," said Tucson attorney Dee-Dee Samet, who specializes in workers compensation, injury and wrongful death litigation.

"Now I probably have two a month come into my office."

Nobody knows how many people in Arizona have RSD, said Phoenix pain management expert Dr. Carol Peairs, but more cases are arising.

"Partly because it's being better diagnosed and partly because it's overdiagnosed," Peairs said.

"As an attorney, we have to learn how to help our clients with RSD," Samet said. "How to defeat the diagnosis or prove the diagnosis, depending on what side you're on.

"Many times, it's a matter of helping your client to get treatment," Samet said.

Dr. Stephen Borowsky, a Phoenix pain management specialist, said with such a complex disorder, malingerers are possible. One patient had convinced several doctors she had RSD until Borowsky found she used rubber bands under her clothes to mimic the symptoms.




For the Original Story Online Click Here: http://www.tucsoncitizen.com/index.php?page=local&story_id=061705a6_reflex

Wednesday, June 15, 2005

Medtronic Boosts Portfolio of Implantable Pain Therapies with Latest FDA Approval


Medtronic
Originally uploaded by rsdscrpsnews.

Press Release Source: Medtronic, Inc.

Medtronic Boosts Portfolio of Implantable Pain Therapies with Latest FDA Approval
Wednesday June 15, 10:38 am ET
Release of SynergyPlus+(TM) enhances therapy options for people with chronic pain

MINNEAPOLIS--(BUSINESS WIRE)--June 15, 2005-- Medtronic, Inc. (NYSE:MDT - News) today announced U.S. Food and Drug Administration (FDA) approval and U.S. availability of its SynergyPlus+(TM) neurostimulation system for chronic pain.

SynergyPlus+ is the newest "pain pacemaker" to join Medtronic's family of implantable chronic pain therapies. It was designed to give patients more control over the delivery of stimulation that blocks pain signals from reaching the brain while performing a variety of daily activities. This advancement allows the world leader in pain management technology to better meet the growing needs of chronic pain patients and their physicians.

Approximately 25 percent of the U.S. population, more than 70 million people, experience some form of chronic pain. Many of these people remain unaware of the range of available treatment options. It is estimated that chronic pain accounts for an estimated $100 billion per year in medical costs, including 515 million lost workdays and 40 million physician visits.

SynergyPlus+ has the greatest number of program options (up to 26) available of any non-rechargeable neurostimulation system on the market today. Using a small, hand-held "remote control" programming device, patients can choose among multiple settings that are preset by a physician to address pain levels associated with different daily tasks, such as standing, walking or laying down.

"Because chronic pain affects each person differently, it's important to have a range of therapies designed specifically to treat the individual needs of any patient," said Dr. Alon Mogilner, Director of Functional and Restorative Neurosurgery, North Shore University Hospital, New York. "SynergyPlus+ is the right choice for many of my patients who require low to moderate levels of stimulation to control their pain."

The device's array of program options provides a level of therapy customization that may result in fewer physician follow-up visits, which can otherwise be required to ensure that the most effective amount of stimulation is delivered over time. In addition, SynergyPlus+ is the only system with diagnostic capabilities that allow physicians to assess the way patients use the system to fine tune delivery of pain-blocking stimulation.

About Chronic Pain

Defined as pain that persists or recurs for more than six months, chronic pain can be caused by a variety of injuries and diseases, and most commonly affects the lower back and legs. Left untreated or under-treated, chronic pain can destroy a person's quality of life. Beyond the physical disability that often results, it can lead to difficulty holding a job, low self-esteem, strained relationships, depression, and suicide.

About the SynergyPlus+(TM) Neurostimulation System

SynergyPlus+ is the next generation of Medtronic's Synergy(TM) system, the neurostimulation device that helped legendary performer and comedian Jerry Lewis overcome nearly 40 years of chronic pain due to decades of performing physical comedy routines.

The SynergyPlus+ system is indicated as an aid in the management of chronic, intractable unilateral or bilateral pain of the trunk and/or limbs that is associated with: failed back syndrome, low back syndrome or failed back, radicular pain syndrome, post laminectomy pain, multiple back operations, unsuccessful disc surgery or degenerative disc disease, peripheral causalgia, epidural fibrosis, arachnoiditis or lumbar adhesive arachnoiditis, and Complex Regional Pain Syndrome (CRPS).

For more information on chronic pain and Synergy Plus+, visit www.tamethepain.com or call 800-510-6735.

About Medtronic Neurological Pain Therapies

The SynergyPlus+ system is the latest advancement to join the Medtronic portfolio of neurostimulation and pump pain therapies. Medtronic offer a variety of pain therapies that are currently available to clinicians specializing in the management and treatment of chronic pain, including Restore(TM), the longest-lasting and most powerful rechargeable neurostimulation system available.

Medtronic also offers a line of intrathecal pain-control pumps, called SynchroMed EL® and SynchroMed® II, which release medication at programmable rates to an area around the spinal cord.

Medtronic's neurostimulation therapy has already achieved worldwide medical acceptance for the management of chronic, intractable, unilateral or bilateral pain associated with many pain-related conditions.

About Medtronic

Medtronic, Inc., (www.medtronic.com) headquartered in Minneapolis, is the world's leading medical technology company, providing lifelong solutions for people with chronic disease.

Any forward-looking statements are subject to risks and uncertainties such as those described in Medtronic's Annual Report on Form 10-K for the year ended April 30, 2004. Actual results may differ materially from anticipated results.
Contact:

Medtronic, Inc., Minneapolis
Public Relations:
Kyra Schmitt, 763-505-0237
or
Investor Relations:
Rob Carson, 763-505-2705


Source: Medtronic, Inc.

For the original article online click here: http://biz.yahoo.com/bw/050615/155618.html?.v=1

Healthbeat: Ketamine for Chronic Pain


WHOI 19 ABC News Healthbeat
Originally uploaded by rsdscrpsnews.

June 15, 2005
Jen Christensen

Healthbeat:

Ketamine for Chronic Pain


Complex Regional Pain Syndrome

Complex regional pain syndrome (CRPS) is a condition characterized by chronic, severe pain that is out of proportion to the degree of symptoms expected for an injury. The pain is often reported as a continual burning sensation or a tingling, throbbing, aching, stabbing or sharp feeling. In many cases, even a slight sensation against the affected area (like the touch of clothing or wind breeze) triggers the pain. The area may also feel hot or cold to the touch and appear discolored (blotchy, purple, red or pale). Nearby joints may be swollen and stiff. Spasms may occur in the affected area of the body. Patients may also experience insomnia and depression.

The exact incidence of CRPS is unknown. The condition is four to five times more common in women than in men and can occur at any age. Symptoms may follow some type of trauma, infection or surgery.

CRPS appears to progress through several stages. Stage one, lasting about one to three months, is characterized by severe, burning pain, muscle spasms, stiff joints, rapid growth of hair and changes in the color and temperature of the skin. In stage two, patients experience more intense pain and swelling of the affected area, decreased hair growth, nail changes (cracking, brittleness, grooving or spots), bone softening, joint stiffness, and weakened muscles. Stage two lasts about three to six months. In stage three, pain becomes unrelenting and severe. The entire limb may be affected with muscle loss, muscle spasms and limitations in movement/mobility.


Treating CRPS

CRPS usually doesn’t respond to over-the-counter pain medications. Doctors may recommend nerve blocks, topical anesthetics and narcotic painkillers. Some patients respond to antidepressants and anticonvulsants (medications to treat seizures). Physical therapy, exercise and behavior modification may also be helpful. In some cases, patients may need implantable devices to control pain.


Ketamine for CRPS

A large percentage of people with CRPS don’t respond to traditional treatment. Some doctors are trying another approach, using low doses of the anesthetic agent, ketamine. Physicians in Germany are inducing coma in patients with CRPS and giving high doses of ketamine. Researchers believe the ketamine blocks the pain pathways and allows normal nerve transmission to return. The induced coma procedure is reserved for patients with such severe symptoms they are unable to function.

The coma procedure is not approved for use in this country. High doses of ketamine are associated with hallucinations, night terrors, flashbacks and depression. However, Dr. Robert Schwartzman of Drexel University College of Medicine is testing the use of intravenous low doses of ketamine over 48 hours. Instead of inducing a coma, patients with CRPS remain awake during the procedure. Patients who have gone to Germany for the coma-induced procedure can have short booster infusions of ketamine to keep symptoms at bay. Investigators warn the treatment doesn’t address the underlying cause of CRPS, so future injury could trigger a return of the symptoms.

The awake ketamine infusion for CRPS is being done by a few doctors in the U.S. For information, log on to the website of American RSDHope at http://www.rsdhope.org.


AUDIENCE INQUIRY
For general information about Complex Regional Pain Syndrome:
American RSDHope, http://www.rsdhope.org
National Institute of Neurological Disorders and Stroke, http://www.ninds.nih.gov

For the original article online click here: http://www.hoinews.com/news/features/4/1596251.html


Tuesday, June 07, 2005

User worries he'll be targeted


Robert Melamede
Originally uploaded by rsdscrpsnews.

User worries he'll be targeted

(Photo - Robert Melamede, chairman of the UCCS biology department, advocates medicinal marijuana and has used it for his spinal arthritis.)

By CARY LEIDER VOGRIN THE GAZETTE

Robert Melamede, the head of the biology department at the University of Colorado at Colorado Springs, has no plans to quit using marijuana.

Dana May of Aurora doesn’t want to give up pot either, but he worries what could happen if he refuses.

May, 47, says pot transformed him from a suicidal invalid into a family man — a dad once again involved in his children’s lives.

“The first time I smoked it, I started crying because of how much pain it took away from me,” May said Monday.

Melamede, an outspoken advocate of the medical benefits of marijuana, uses it to allevi- ate spinal arthritis, inhaling its oils through a heat vaporizer.

Although both men are among 668 Coloradans given a green light to grow and use the drug under the state’s medical marijuana law, a Supreme Court ruling issued Monday says they could be prosecuted under federal law. The court’s 6-3 decision affects users in Colorado and nine other states.

It’s improbable, though, that those on the registry will be actively sought out and prosecuted.

Colorado Attorney General John Suthers said federal law agencies don’t have the resources to focus on registrants who abide by the law, which limits them to six plants.

“For most marijuana cases, 100 plants is the threshold for federal prosecution,” Suthers said.

Jeff Dorschner, spokesman for the U.S. Attorney’s Office, said federal prosecutors in Colorado are focusing on large-scale drug rings, but if investigators come across marijuana in the possession of certified users, they will seize it — just as they have always done.

Colorado’s medical marijuana law was passed by voters in November 2000 and went into effect in June 2001. It allows registered patients to legally possess up to 2 ounces in a usable form, in addition to growing six plants — three of which can be flowering.

May got on the state’s registry in 2002, at his neurologist’s suggestion. He had undergone 10 surgeries and tried a gamut of traditional pain-relief medications for a nerve disease called reflex sympathetic dystrophy. Nothing worked.

“It would be like if you stuck your feet in a deep fryer,” he said of the burning pain he experienced.

He said he now can attend his kids’ Scout meetings and softball games, describing himself as “just an old married guy just trying to have a life. I’m so unlike a pothead.”

Last year, though, his home was raided and his marijuana seized. He said he wasn’t prosecuted because he was on the registry. A case against a Florissant woman on the registry also was dropped last year.

Melamede, the UCCS professor who also teaches a course on medical marijuana, says research backs the benefits of marijuana in everything from pain relief to slowing the progression of disease.

“No intelligent person can look at the science and not conclude that there’s medical value,” he said. “For some people, it’s the perfect medicine, whereas the government says it has absolutely no medical value.”

Melamede says he takes a “few drags a day,” generally in the evenings. He uses a vaporizer to avoid the toxins associated with smoking.

The 57-year-old father of four got his permit when he moved to Colorado in 2001 from Vermont, where he also taught.

“I was very happy to be legal,” he said, conceding he’s been a “marijuana consumer” for years.

Melamede predicted Monday’s high court decision will mean nothing to registered users.

“It’s a completely meaningless ruling for most medical patients, because the feds have always had the right to arrest us, but they don’t do it unless there’s more than 100 plants.”

Kristopher Hammond, a Steamboat Springs attorney who’s representing clients in two medical marijuana cases, also doesn’t expect the government to start busting registered users, citing the 100-plant threshold.

“If that’s the best use of federal taxpayer dollars, to take medicine away from sick people, that’s outrageous,” Hammond said.

Still, May worries about a drug task force raiding his home again.

“For me to continue, I have to become the criminal I was trying to avoid by doing this stuff exactly right,” he said. “I try to do this right by the book.”

CONTACT THE WRITER: 636-0236 or cary@gazette.com

The Associated Press contributed to this report.

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Drug's Users Say Ruling Won't End Their Efforts


GasdenTimes.com
Originally uploaded by rsdscrpsnews.

Published June 07. 2005 6:01AM

Drug's Users Say Ruling Won't End Their Effort

By DEAN E. MURPHY
New York Times

OAKLAND, Calif., June 6

Advocates of medicinal uses of marijuana suffered a legal setback on Monday in the United States Supreme Court, but there was little panic or despair amid the tears of disappointment.

"Just because we lost this little battle does not mean that the war is over," Angel McClary Raich, one of the marijuana users whose case was before the Supreme Court, said at a news conference here. She added: "We're just sick. We're not criminals."

Though some advocates worried that the ruling might embolden opponents of medical marijuana, as a practical matter, there are very few federal prosecutions of medical marijuana users nationwide.

An unpublished survey this year by the Drug Policy Alliance, a group that advocates the legalization of medical marijuana, found that there were fewer than 20 federal prosecutions of medical marijuana users or growers since 1996, when California passed the first medical marijuana law, said Daniel N. Abrahamson, the group's director of legal affairs in Oakland.

All but a handful of the prosecutions, Mr. Abrahamson said, involved cases in which the users were accused of growing up to 1,000 plants or more. "They are selectively choosing big-fish cases, and are not sending a message to the average patient growing a few plants in the backyard," Mr. Abrahamson said.

William L. Grant, a spokesman for the Drug Enforcement Administration, said that the emphasis had been to focus on "major trafficking organizations and attempt to disrupt and dismantle them from top to bottom, including their financial networks."

Asked about the effect of the Supreme Court ruling on the federal enforcement, Mr. Grant said, "Our mission is going to remain the same."

In a 6-to-3 decision, the justices ruled that the federal authorities might prosecute sick people who used marijuana under their doctors' supervision, even in states that allowed the medicinal uses. Eleven states have state laws allowing some uses of medicinal marijuana, even though federal law outlaws the drug.

Opponents of the medical marijuana laws said they were hopeful that the court ruling would put a damper on efforts by advocacy groups to get similar laws passed in other states. Calvina Fay, executive director of the Drug Free America Foundation, said the laws were dangerous because they treated marijuana like drugs approved for use by the federal government.

"We don't want truly sick and dying people to be scammed into thinking they are being medically treated by smoking pot," Ms. Fay said. "We believe that people who are truly sick need good, legitimate medicine."

John Redman, director of Californians for Drug Free Youth, a drug abuse prevention group based in San Diego, said marijuana rivaled alcohol as a source of problems among young people who sought substance abuse treatment. He said the medical marijuana dispensaries across the state - there are an estimated 80 of them in California - were rife with problems.

"You have unfettered access to a potentially harmful drug, and that is a problem," Mr. Redman said.

Reaction among the state authorities to the court ruling was mostly muted.

The authorities in Oregon stopped issuing marijuana registration cards for new patients, though the 10,000 patients already registered with the state can still receive marijuana under state law with a doctor's recommendation.

"We need to proceed cautiously until we understand the ramifications of this ruling," Dr. Grant Higginson, who oversees the Oregon Medical Marijuana Program, said in a statement. Oregon officials described the move as temporary, and said that the state attorney general had been asked to issue an opinion as guidance.

The attorney general in Montana, Mike McGrath, said that he stood by that state's medical marijuana law and that the federal authorities "will be on their own" if they tried to prosecute patients registered under the state law.

"I think it's going to be up to the Bush administration to make a decision as to how it's going to deal with theses cases as a matter of policy," Mr. McGrath, a Democrat, said.

Bill Lockyer, the California attorney general, said the ruling left patients vulnerable to federal prosecution and illustrated "the vast philosophical difference between the federal government and Californians on the rights of patients to have access to the medicine they need to survive and lead healthier lives."

California was the first state to legalize the use of marijuana for medicinal purposes, when voters approved Proposition 215, the Compassionate Use Initiative, in 1996. The state is believed to have the vast majority of the estimated 115,000 registered medical marijuana users nationwide.

"There is something very wrong with a federal law that treats medical marijuana the same as heroin," Mr. Lockyer, a Democrat, said in a statement.

Ms. Raich, who suffers from multiple illnesses, including chronic wasting syndrome, said she believed that she was alive because of her medicinal use of marijuana. At a tearful news conference, she said that she intended to continue using the drug, which she takes every two hours, including when she has surgery.

"We are not being disobedient," she said. "We are just using this medicine because it saves our lives."

Other users said they were frightened by the prospect of federal agents' arriving at their doorstep and might give it up.

Dana May, 47, a father of three in Aurora, Colo., has already had his home raided by state and federal officials for growing marijuana for himself and two other people with medical conditions. Mr. May, who has been on disability for 10 years because of reflex sympathetic dystrophy, described his pain as nightmarish. But his fear of the authorities, he said, would put an end to his marijuana growing.

"It's sad," Mr. May said. "The first thing that went through my mind when I heard about the ruling was, 'I hope I don't get suicidal again.' "

In at least one case in California, the ruling could make the difference between freedom and imprisonment. Bryan J. Epis was freed from prison last year by a federal appeals court after serving two years of a 10-year sentence for growing marijuana plants for medicinal purposes at his home in Chico.

Mr. Epis, 38, was freed pending the outcome of the Supreme Court case. He will now have to go back to court and request a permanent reduction in his sentence.

"Yeah, I'm nervous," Mr. Epis said.


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Monday, June 06, 2005

SERVICE NUMBERS


TimesDispatch.com
Originally uploaded by rsdscrpsnews.

This list of agencies and organizations that provide counseling and other services to the public appears once a month in the Richmond Times-Dispatch.

VA RSD Association (Reflex Sympathetic Dystrophy/Chronic Regional Pain Syndrome) (RSD/CRPS) -- meets last Wednesday of each month, Sheltering Arms Hospital, 6-8 p.m., second floor conference rooms 1 and 2. 320-7596.

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Friday, June 03, 2005

New Treatment May Relieve Suffers Of CRPS


CBS 2 Chicago
Originally uploaded by rsdscrpsnews.

New Treatment May Relieve Suffers Of CRPS

Jun 3, 2005 2:56 pm US/Central
CHICAGO (CBS 2)

Chronic regional pain syndrome or CRPS produces crippling nerve pain that desperate patients would go to any lengths to get rid of. Now, a radical European treatment may lead to new ways to end the suffering.

"I kinda beat the odds again and again,” said Dan Defilippo.

Twenty-five-year-old Defilippo is the sole survivor of a car crash that killed four friends. After multiple operations, he was nearly recovered, when surgery to reduce discomfort from pins in his leg, triggered unbearable pain.

"It would be so severe that I would literally black out in mid-step and fall on the floor and be unconscious from pain,” Defilippo said.

Dr. Robert Schwartzman of Drexel University Medical College diagnosed Dan with chronic regional pain syndrome. CRPS is a condition in which damaged nerves make even minor injuries overwhelmingly painful.

"What the pain does is actually change your spinal cord and your brain so that pain is magnified,” Schwartzman said.

Nothing relieved Dan's pain so he took a drastic step. He flew to Germany for an experimeal treatment - a five-day coma induced by continuous low doses of the anesthetic ketamine.

"The fear of memory loss, the fear of death, was gone because of the pain and the quality of life was nonexistent,” Defilippo said.

Schwartzman is the only American on the German team. He says this risky treatment is used only as a last resort.

"I mean they're dreadfully sick people, they have no life,” Schwartzman said.

The ketamine re-sets the pain mechanism in the nervous system. Many patients wake up pain-free.

"Your spinal cord seems to go back to normal,” Schwartzman said.

"I'm a changed man. It saved my life,” Defilippo said.

A life that continues to beat the odds.

The five-day coma is not approved in the U.S. Dan has created a foundation to send others to Germany for treatment.

Ketamine is also used as an animal tranquilizer and has the street name "Special k".


FOR MORE INFORMATION:
American RSDHope
National institute of Neurological Disorders and Stroke


Mary Ann Childers


(© MMV, CBS Broadcasting Inc., All Rights Reserved.)

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