Friday, December 29, 2006

Understanding and Treating Complex Regional Pain Syndrome

October 2006
Understanding and Treating Complex Regional Pain Syndrome
Devon Schuyler

"We're lost in the woods here about the causes of complex regional pain syndrome [CRPS], because the definitive trials could cost millions and the NIH is not funding pain research now," said R. Norman Harden, MD, director of the Center for Pain Studies, Rehabilitation Institute of Chicago.

What to do? The Reflex Sympathetic Dystrophy Syndrome Association estimates that the CRPS affects between 200,000 and 1.2 million Americans. The underlying causes of the syndrome have yet to be defined, and no definitive diagnostic test exists even though CRPS was first described in the late 19th century by the neurologist Silas Weir Mitchell. Mitchell referred to the cluster of symptoms he noticed in some of the Civil War soldiers who were under his care as "causalgia."1 The soldiers persistently complained of severe, burning pain long after their wounds had healed.2 They also experienced swelling, redness, and temperature fluctuations at the injured site, typically a limb.

More than a century later, in 1994, the International Association for the Study of Pain (IASP) gave the syndrome its official name-complex regional pain syndrome-and developed clinical criteria for diagnosis.3 Confusion about CRPS remains, however, and may be part of a larger shortcoming related to overall pain management. "Physicians know very little about pain in general and even less about CRPS," said Anne Louise Oaklander, MD, PhD, associate professor of neurology at Harvard Medical School in Boston.

CRPS has 4 diagnostic criteria. The first-which is not necessary for diagnosis-is the presence of trauma or a cause of immobilization. Second is continuing pain, allodynia, or hyperalgesia in which the pain is disproportionate to any known inciting event. Third is evidence of edema, changes in skin blood flow, or abnormal sudomotor activity in the region of pain. Fourth is the exclusion of other conditions that would account for the degree of pain and dysfunction.

The IASP further divides CRPS into CRPS I, in which major nerve damage is not present, and CRPS II, in which major nerve damage is present. CRPS II replaces Mitchell's old term "causalgia," while CRPS I replaces the term "reflex sympathetic dystrophy," which was introduced in 1946 by a Boston physician named James Evans.4

At least one neurologist rejects the IASP criteria, specifically for the diagnosis of CRPS I. "You diagnose CRPS I only when there is no medical explanation for the symptoms," said Jose Ochoa, MD, PhD, professor of neurosurgery and neurology at the Oregon Health and Science University and director of the Neuromuscular Unit at Legacy Good Samaritan Hospital and Medical Center in Portland, Oregon. He said that such a diagnosis of exclusion is illogical. In his view, it means that the clinician simply has failed to diagnose the true cause of pain-whether it be nerve injury, arthritis, phlebitis, hysteria, or malingering.

But most physicians accept the criteria, although it is possible that the definitions could change as clinicians gain a better understanding of the syndrome. "In time, we may recognize half a dozen different kinds of CRPS, not just two," said Ricardo A. Cruciani, MD, PhD, vice chair of the Department of Pain Medicine and Palliative Care at Beth Israel Medical Center in New York City.

Diagnosis of CRPS is clinical, based on the patient's history and examination findings. "This is a disease that really puts a premium on the clinical diagnostic skills of the neurologist because there is no MRI scan or electromyography study that can make this diagnosis," said Oaklander.

Neurologists should look for focal signs of nerve injury, such as weakness, loss of pin sensation, reflex changes, or Tinel signs, explained Oaklander. They can check for mechanical allodynia with a light touch and for temperature allodynia using test tubes of warm and cool water. The clinician should also take note of trophic changes to the skin, nails, and hair and look for signs of autonomic disturbance, such as neurogenic edema or the differences in temperature or color in the patient's limbs.

Thermography or a spot temperature measurement can be used to document vasomotor autonomic disturbances. Changes in perspiration can be assessed by dragging a smooth-handled instrument across the skin of the affected and unaffected side; the instrument will glide more easily over sweaty skin than dry skin.1 The clinician may also note decreased range of motion, weakness, dystonia, tremor and, in some cases, myoclonic activity.1

Bone scans and sympathetic nerve blocks do not aid in diagnosis, but some clinicians will use a 3-phase bone scan to reveal whether CRPS has resulted in osteopenia and use a sympathetic nerve block to determine whether the sympathetic nervous system is involved-which it is in about 20% of cases, according to Cruciani. In addition, Oaklander said that she will occasionally do a somatic nerve block to identify exactly which nerves have been damaged. Radiographs should be used only in cases where an orthopedic problem is suspected to be the cause of the syndrome.

CRPS is usually triggered by an injury such as a fracture, sprain, crush injury, or penetrating injury. Oaklander pointed out that even something as innocuous as having blood drawn can lead to CRPS, as can undergoing a surgical procedure. "Damage to cutaneous sensory nerves has been shown to be the culprit, but we don't understand why only very rare patients are left with problems after such routine procedures," she said.

What exactly goes wrong in CRPS is poorly understood. It has alternatively been explained as a hypersensitization of the CNS, an inflammatory process, and a disorder of the sympathetic nervous system. According to Cruciani, constant pain signals from the periphery may lead to changes in the posterior horn of the spinal cord, such as an increase in the number of N-methyl-d-aspartic acid (NMDA) receptors that bind glutamate, an increase in the number of certain types of sodium channels, or a change in the expression of the calcitonin gene-related peptide. An increase in proinflammatory cytokines also has been identified. "All of these changes at the molecular level may have a correlate in the excitability of the somatosensory cortex," he said, explaining that plastic changes in this area have been correlated with chronic pain.

One hypothesis is that the pain of CRPS I is caused by undetected nerve injuries. In an effort to identify these injuries, Oaklander undertook a skin biopsy study of 18 adults with CRPS I and 7 osteoarthritic patients with disabling leg pain, swelling, and disuse. "We found anatomical evidence that patients with CRPS I had fewer sensory nerve endings in the epidermis of their painful CRPS-affected area than in nearby control areas," reported Oaklander.5

It is not clear, however, whether these nerve changes are the cause of CRPS I or a consequence. Harden, who also is associate profes-sor in the Department of Physical Medicine and Rehabilitation at Northwestern University Feinberg School of Medicine, Chicago, argued that the changes are probably a consequence: "The most likely explanation is that these people have this intense vasoconstriction from the disease . . . and this causes a dying back of the nerves," he said. Oaklander agreed that cause and effect remain unclear but pointed out that her study found no evidence of nerve losses in the control group with other painful injuries.

One of the biggest controversies in CRPS is the role of the mind. Some experts maintain that CRPS often has a psychogenic cause, such as depression. "Fifty percent of people with chronic pain are depressed," said Cruciani. It's unclear, however, whether depression is a cause or a consequence of the syndrome. Sociologic considerations also may play a role, especially if the patient has a financial incentive to be disabled.

"I would say that it is a biomedical disease, a psychological disease, and a sociologic disease," said Harden. "It is all of those things in every patient; it's just to be determined in what measure."

By contrast, Robert J. Schwartzman, MD, chair of Neurology at Drexel University College of Medicine in Philadelphia, remarked that "it's never, ever psychiatric. When you have severe pain that totally wrecks your life, you're depressed."

Oaklander took a slightly different approach, pointing out that if the patient's chronic pain can be attributed to a psychogenic cause, the condition is not CRPS. She also cautioned neurologists not to attempt to make psychiatric diagnoses. She pointed out that the country's current disability system discourages patients from recovering. She echoed the idea that there might be economic reasons why patients maintain their disability. However, she said that she did not encounter malingering any more frequently among patients with CRPS than among patients with any other medical condition.

Treatment of CRPS usually involves several specialists, all of whom must have expertise in the syndrome. For example, Cruciani, who works at a referral center for patients with CRPS, reports that his team includes neurologists, anesthesiologists, rehabilitation experts, psychiatrists, and a psychologist. "You have to have a team that's knowledgeable about CRPS and how to treat it," said Harden. "If you don't have that kind of team in place, you fail."

Treatment of CRPS is far from straightforward. The FDA has not approved any pharmacologic or interventional treatments. The most common therapies, however, are medication, physical rehabilitation, and nerve blocks. Some patients also undergo spinal cord stimulation, drug pump implantation, or other surgery.

Medication. Many of the drugs used in CRPS are chosen based on their success in treating other types of neuropathic pain disorders, such as diabetic retinopathy and postherpetic neuralgia.6 For example, opioids, the anticonvulsant gabapentin (Neurontin), and tricyclic antidepressants have not been evaluated for treatment of CRPS but are often used because randomized clinical trials have shown them to be effective in treating other neuropathic conditions.

Although opioids are the gold standard for treating acute pain, their use is highly controversial in CRPS.6 "We know that opioids cause hyperalgesia," said Harden. "If you have a drug that causes hyperalgesia and a disease that is characterized by hyperalgesia, how logical is it to use that drug in that disease?" Oaklander agreed that it was theoretically possible for opioids to worsen CRPS, but she said that this should not prevent physicians from prescribing opioids for certain patients who have CRPS. She did, however, caution that the lowest effective dose should be used. Some pain specialists advocate the use of methadone for the management of CRPS, according to Cruciani. Another possibility is an opioid in combination with an NMDA antagonist such as memantine (Namenda).

The best-studied treatment for early CRPS is the bisphosphonate drugs. Placebo-controlled studies have shown improvements in active movement and motor function with intranasal calcitonin,7 intravenous clodronate,8 and intravenous alendronate (Fosamax)9; one placebo-controlled study showed no improvement with intranasal calcitonin.10 Clodronate may be the most effective because it acts on several inflammatory mediators.6 However, Oaklander pointed out that bisphosphonates have not been tested for use in chronic CRPS.

Another common treatment for CRPS is systemic corticosteroids. In a study of 23 patients, 30 mg/d of oral prednisone was significantly more effective than placebo was.11 "We use that strategy to break the cycle of pain when a patient goes into a flare," said Cruciani.

Several studies have looked at topical medications for CRPS. One study found topical dimethyl sulfoxide to be as effective as an oral free radical scavenger.12 Topical lidocaine patch also was effective in an open-label study.13 Experimental medications for CRPS include thalidomide, which has not yet been studied in controlled trials; etanercept (Enbrel); ketanserin; and ketamine. In a highly controversial procedure, Schwartzman sent 31 patients to Germany to be treated with anesthetic doses of ketamine that produce a coma lasting 5 days. Schwartzman reported that 10 of those patients are now cured, including 1 who has been in remission for 9 years. Adverse effects included hallucinations and flashbacks; potential complications include memory loss, pneumonia, blood clots, and stroke. Harden said that most clinicians view the ketamine coma treatment as questionable, but that its true value would remain unknown until randomized controlled trials are performed.

Schwartzman also has developed a 10-day course of intravenous ketamine that is delivered on an outpatient basis. Positive results were achieved in an open-label study.14 He said that he and his team have used the treatment in about 150 outpatients.

Cruciani pointed out that ketamine has been helpful in the treatment of postherpetic neuralgia. He cautioned that the drug has significant adverse effects and that most patients would be unable to tolerate it in doses high enough to control the pain of CRPS.

Physical rehabilitation. Most experts stress the importance of physical rehabilitation, including both physical and occupational therapy. Rehabilitation should be started immediately or as soon as medication has had a chance to relieve the most severe pain.

"The most important thing is physical therapy," said Cruciani. "Not only do physical therapy and exercise improve CRPS in the affected limb, they also prevent it from migrating to other parts of the body." Cruciani refers patients with CRPS of the lower extremities to physical therapists and patients with CRPS of the upper extremities to occupational therapists. The goals of physical rehabilitation include minimizing edema, normalizing sensation, promoting normal positioning, and decreasing muscle guarding.15

Nerve blocks. Nerve blocks for CRPS usually contain local anesthetics-either alone or in combination with clonidine, NSAIDs, corticosteroids, bretylium, or guanethidine.16 There are no universally accepted guidelines for the use of lumbar sympathetic or stellate ganglion nerve blocks, and the quality of published reports is generally poor.16 However, some clinicians do use nerve blocks in select cases, especially if pain is severe enough despite treatment with oral medication to interfere with physical or occupational therapy. If a nerve block is effective in decreasing pain, the clinician may want to consider repeating the treatment. However, there is no convincing evidence to support the use of long-term treatment with nerve blocks.16

"Sympathetic nerve blocks can relax the blood vessels and give temporary relief, but meta-analysis shows that there's no evidence of long-term disease modifying benefits," said Oaklander, who advised that patients receive only a few.

Spinal cord stimulation. Many experts recommend the use of spinal cord stimulators in CRPS, especially for patients who are responsive to sympathetic blocks.17 Research on the stimulators is far from conclusive, however. In the one randomized trial conducted on spinal cord stimulation for CRPS, patients assigned to spinal cord stimulation plus physical therapy had a significant reduction in pain compared with those assigned to physical therapy alone.18 Harden argues that 1 trial is not enough to go on for clinical decision making. "The study suggests that perhaps spinal cord stimulation works a little bit better than physical therapy alone, but it's unclear what the nature of the control treatment was." He said that given the risks and high cost of implanting a surgical device, more studies are needed. "You should not be charging $40,000 for an implanted device like this without more evidence," he said.

Still, many experts find the devices to be beneficial. "We use a lot of spinal cord stimulation," said Cruciani. He said that the treatment works well in the limbs but is less effective for pain in the center of the body. In addition, Oaklander said that she often recommends the stimulators but cautioned that they are expensive, invasive devices that do not help all patients. She conceded that more research is needed to determine how the devices work and which patients are most likely to benefit.

Implanted drug pumps. Implanted drug pumps are even less well studied than spinal cord stimulators, with most research consisting of case reports.19 "The implanted pumps that deliver opioids can be useful for someone with pain that responds best to treatment with an opioid but who develops intolerable adverse effects from taking it as a pill," said Oaklander. "We also consider baclofen pumps for patients with intractable CRPS dystonia that's too widespread to be treated with botulinum toxin [Botox] . . . so there is a very specific and limited number of patients for whom that might be an appropriate treatment." Cruciani, by contrast, said that he has many patients on the pumps in his group practice. He pointed out that in addition to opiates, clonidine, baclofen, and bupivacaine independently or in combination could be administered by pumps. He also has treated several patients with ziconotide (Prialt), a new drug that has been advocated for patients whose pain is resistant to opioid therapy or who develop intolerable adverse effects from opioids.

Surgery. A number of surgical approaches have been attempted in an effort to cure CRPS. "The most effective treatment for painful nerve injury is surgery, when indicated," said Ochoa, such as in the case of surgery to decompress a trapped median nerve, manage a neuroma, or manage a tumor or disk compressing a nerve.

Cruciani agreed that surgery is essential when a clear surgical cause can be found. However, he estimated that only about 10% of CRPS cases can be addressed surgically. "It tends to be the exception more than the rule," he said. Some surgeons have performed sympathectomy in an effort to resolve pain, but results of published reports are not encouraging. In some cases, the procedure may lead to a worsening of pain.16

Most experts agree that with treatment, most patients can expect their CRPS to improve. "There's a misconception that personal injury lawyers would like to promulgate, which is that CRPS is lifelong and completely disabling," said Harden. With proper treatment, patients could get on with their lives, he said. Because patients go into remission as opposed to being cured, patients need to stay active, engage in physical and occupational therapy, and possibly take medication and continue with other treatments that have helped, he added.

Cruciani estimated that with treatment, about 20% of patients go into remission. "Then you have about 40% to 50% of patients who are stabilized. Although they continue to have pain and are uncomfortable, they can function to a certain degree. Then you have 30% for whom it doesn't matter what you do; they're miserable."

Oaklander pointed out that she never sees geriatric patients with CRPS; the average age of most patients is about 40, and the prevalence decreases as patients age. "These kind of epidemiologic data are consistent with a disease that does not last forever," she said. "It's one of the things that keeps me optimistic."

1. Harden RN, Bruehl SP. Diagnosis of complex regional pain syndrome: signs, symptoms, and new empirically derived diagnostic criteria. Clin J Pain. 2006;22:415-419.
2. Mitchell SW. Injuries of the Nerves and Their Consequences. Philadelphia: JB Lippincott & Co; 1865.
3. Merskey H, Bogduk N, eds. Classification of Chronic Pain: Descriptions of Chronic Pain Syndromes and Definitions of Pain Terms. 2nd ed. Seattle: IASP Press; 1994.
4. Evans JA. Reflex sympathetic dystrophy. Surg Clin North Am. 1946;26:780-790.
5. Oaklander AL, Rissmiller JG, Gelman LB, et al. Evidence of focal small-fiber axonal degeneration in complex regional pain syndrome-I (reflex sympathetic dystrophy). Pain. 2006;120:235-243.
6. Rowbotham MC. Pharmacologic management of complex regional pain syndrome. Clin J Pain. 2006;22:425-429.
7. Gobelet C, Waldburger M, Meier JL. The effect of adding calcitonin to physical treatment on reflex sympathetic dystrophy. Pain. 1992;48:171-175.
8. Varenna M, Zucchi F, Ghiringhelli D, et al. Intravenous clodronate in the treatment of reflex sympathetic dystrophy syndrome. A randomized, double blind, placebo controlled study. J Rheumatol. 2000;27:1477-1483.
9. Adami S, Fossaluzza V, Gatti D, et al. Bisphosphonate therapy of reflex sympathetic dystrophy syndrome. Ann Rheum Dis. 1997;56:201-204.
10. Bickerstaff DR, Kanis JA. The use of nasal calcitonin in the treatment of post-traumatic algodystrophy. Br J Rheumatol. 1991;30:291-294.
11. Christensen K, Jensen EM, Noer I. The reflex dystrophy syndrome response to treatment with systemic corticosteroids. Acta Chir Scand. 1982;148:653-655.
12. Perez RS, Zuurmond WW, Bezemer PD, et al. The treatment of complex regional pain syndrome type I with free radical scavengers: a randomized controlled study. Pain. 2003;102:297-307.
13. Devers A, Galer BS. Topical lidocaine patch relieves a variety of neuropathic pain conditions: an open-label study. Clin J Pain. 2000;16:205-208.
14. Goldberg ME, Domsky R, Scaringe D, et al. Multi-day low dose ketamine infusion for the treatment of complex regional pain syndrome. Pain Physician. 2005;8:175-179.
15. Harden RN, Swan M, King A, et al. Treatment of complex regional pain syndrome: functional restoration. Clin J Pain. 2006;22:420-424.
16. Nelson DV, Stacey BR. Interventional therapies in the management of complex regional pain syndrome. Clin J Pain. 2006;22:438-442.
17. Hord ED, Cohen SP, Cosgrove GR, et al. The predictive value of sympathetic block for the success of spinal cord stimulation. Neurosurgery. 2003;53:626-632.
18. Kemler MA, Barendse GA, van Kleef M, et al. Spinal cord stimulation in patients with chronic reflex sympathetic dystrophy. N Engl J Med. 2000;343:618-624.
19. Kanoff RB. Intraspinal delivery of opiates by an implantable, programmable pump in patients with chronic, intractable pain of nonmalignant origin. J Am Osteopath Assoc. 1994;94:487-493.

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Thursday, December 28, 2006

Donated motorized chair gives woman independence

Donated motorized chair gives woman independence


After being enslaved by a 60-pound wheelchair, Melissa Williams was given a piece of her independence back when strangers gifted her a motorized chair.

A new cart, costing $5,600, was delivered to Williams' home a couple of days ago.

Williams, 37, Pasco, Wash., suffers from Reflex Sympathetic Dystrophy, a painful disease which disturbs the sympathetic nervous system and can cause swelling and loss of use of an affected area.
Her legs have been a target of this disease, which has confined her to a wheelchair, crutches or a walker.

"There's a smile you have when you have independence," Williams said. "I lost that. It was really wonderful to get that back."

Jeff Harbach, one of the owners of the local business, David Gabriel Furniture, 1770 E. Red Cliffs Drive, said the chair originally belonged to his mother, Arlene Harbach, who died of brain cancer in 2004.

She was unable to use the chair because her cancer advanced so quickly.

Over the last couple of years, Harbach and his family didn't know what to do with it.

"We never really felt right about selling it so it just stood around," Harbach said.

The solution for the chair didn't come up until a few months ago, when Harbach's mother-in-law, Linda Urza, told him about Williams.

Urza, Richland, Wash., works at River Stone Dental where Williams has been going for dental work for 15 years.

She has known Williams for five years and has watched her go from a perfectly healthy person to not being able to do anything for herself. She said Williams ended up in a wheelchair. Then she could no longer push it because of the deterioration of muscle in her arms.

"She (Williams) has digressed so rapidly that she can't use her hands," Urza said. "I wanted in anyway to ease her burdens."

Urza offered money to Harbach but after discussing it with his sisters, Harbach said they wanted to give it to Williams.

"We were excited to do it," he said. "We knew that if we weren't going to sell it we wanted to give to someone who could use it."

Urza said everyone had to do something to make this happen.

"Everyone did something so she could have this miracle," she said.

David Mease, Harbach's brother-in-law and co-owner in David Gabriel Furniture, was part of helping getting the chair wrapped and finding shipping.

Mease said it was good to let Williams know that there are people in the world who still give.

"The neat thing is how it brings everybody together. It's touching for all of us," Mease said. "I've never met her, but it's as if I've known her all along."

Now that Williams has the chair, she has gained parts of her freedom back. Before, she said she had to coordinate with people to come over so they could open her doors and go out to the mailbox.

She said she can now take her service dog for a walk or go to the grocery store around the corner.

"It's a blessing that there's people still in the world willing to do that for people and expect nothing in return," Williams said.

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Wednesday, December 27, 2006

Gift of wheels

Gift of wheels

Published Friday, December 22nd, 2006
By John Trumbo, Herald staff writer

Melissa Williams received a Christmas gift Thursday that was beyond her wildest expectations.

Two Federal Express employees drove up to her front door in Pasco at 10:45 a.m. and unloaded a new motorized wheelchair that had been shipped overnight from St. George, Utah.

The 200-pound package was a gift from people whose mother acquired it earlier this year. But she died of brain cancer without having used it.

Williams and the wheelchair connected through the good will and initiative of Richland's Linda Urza, who works in the office of Williams' dentist.

Urza said she knew about Williams' debilitating condition, called reflex sympathetic dystrophy, and was surprised how quickly it had advanced. She also knew that her son-in-law in St. George had access to the motorized wheelchair and might be willing to donate it to Williams.

After making several phone calls, the donation was set.

"He said family members decided it would be a blessing to give it as a gift" to a total stranger, she said.

Urza flew to Las Vegas on Nov. 20 to meet family members and take the wheelchair to St. George, where a trucking company was to ship it to the Tri-Cities.

Urza's son-in-law and son, who owns a furniture store in St. George, arranged through Federal Express to transport the heavy wheelchair at a discounted rate. But the shipping company executives had a better idea -- they'd do it for free, and deliver it overnight at no extra charge.

Williams, 37, was aware the gift was on its way, but didn't expect it to arrive until the day after Christmas.

"It was a total surprise that it came today." said Williams, who is thrilled to have the battery-powered machine.

"The way I had to get around before was in a 60-pound manual wheelchair like hospitals use," she said.

But Williams no longer has the strength to push herself in the manual wheelchair, and she has not been able to convince her insurance company to pay for a power chair like the one she received Thursday.

"The insurance company says I already have a wheelchair and they won't replace it unless it is over 5 years old or totally broken," she said.

"My doctors have written letters of my medical need (to the insurance company), and they still deny it," she added.

The new wheelchair, which Urza said still had the $5,600 price tag on it, will allow Williams to be more independent and not have to coordinate her schedule with others when she wants to go somewhere.

"It is absolutely fabulous for my Christmas," Williams said.

"It's amazing the generosity other people are willing to do," she added.

Urza said the way the gift came about amazed her too.

"I mentioned it to one person and it went from there. It was the right people at the right time who were able to make a big difference in her life," Urza said.

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Imaging could furnish proof of chronic pain

Imaging could furnish proof of chronic pain
Emotional, legal boost for patients
By Carey Goldberg, Globe Staff
December 19, 2006

Researchers foresee a day when people tortured by chronic, unexplained pain will be able to prove that they really hurt -- evidence that could help sufferers be taken more seriously and could even lead to better treatments.

Recent studies suggest that prolonged, ongoing pain leaves a signature in the brain that can be detected using advanced imaging techniques. In other work, researchers at Massachusetts General Hospital and elsewhere have found that excruciating nerve damage can be detected in bits of skin the size of a pinhead. And genetic tests may someday prove useful, researchers believe: Certain genes appear to be linked to lower pain thresholds and a tendency to develop chronic pain.

Most of the research remains years from helping patients, but as it comes to fruition, "what it means is that no longer can they say, 'it's all in your head,' " said Jim Broatch , who leads an advocacy group for people with a specific chronic pain disorder.

Clinical proof of pain could make an enormous difference for patients -- emotionally, with unsympathetic relatives and colleagues, and legally, in battles with insurers and employers, researchers say.

And as science uncovers more of the objective signs of pain, that knowledge may help with diagnoses, treatment, perhaps even the development of new drugs, they say.

Late last month, German researchers reported that they had turned up microstructural changes in the brains of people who had suffered for years from lower back pain.

The study of 40 patients, presented at the Radiological Society of North America conference in Chicago, used a type of brain scanning called Diffusion Tensor Imaging, which can detect long-term changes in the nerve pathways in the brain.

The scan identified three areas involved in pain processing that showed signs of heightened activity. It was as though pathways that had started as single-lane roads had been expanded into four-lane superhighways, as more and more signals traveled along them, said researcher Juergen Lutz .

"With these objective and reproducible correlates in brain imaging, chronic pain may no longer be a subjective experience," Lutz said in a press release.

Other work focuses on the theory that people who have chronic pain might have something wrong with their pain-killing system.

Last month, University of Michigan researchers reported findings that patients with fibromyalgia, a chronic pain disorder, have abnormally low levels of natural opiate-like painkillers in parts of their brains.

The study, presented at a rheumatology conference, "also just validates that these people are in pain," said researcher Richard E. Harris . "They're trying to turn on their analgesic system but it's not enough to reduce the pain."

Brain imaging of pain is still too experimental for clinical use but that is coming, Harris said. "I'd say it will probably be five or 10 years until we can have a patient walk into a doctor's office and say, 'I have pain,' and the doctor says, 'I want to refer you out to a specialist who does imaging to verify that or find out where your pain is located,' " whether in the brain, spinal cord, or elsewhere, he said.

Proving the presence of pain through genetic testing is probably even further away , Harris and others said. Several studies have established a link between a gene and pain disorders, including one that can affect the jaw; a mutation in that same gene seems to predispose people to low pain-killing opioid activity in the brain and low pain thresholds, published research suggests.

Other work is much further along. At Mass. General, for example, Dr. Anne Louise Oaklander is already measuring "the objective correlates of pain" by counting the numbers of pain-sensing nerve endings in tiny skin samples from patients with unexplained pain. Paradoxically, patients with previously unexplained pain tend to have fewer such endings.

Such skin biopsies allow researchers to diagnose "small fiber neuropathies," the nerve damage that is sometimes a side effect of diabetes and other diseases. The nerve endings are so tiny that they have been largely invisible, Oaklander said, but skin biopsies are "opening a window into the pain system, allowing us to see when it is damaged."

Oaklander's work recently helped a college athlete who suddenly began experiencing an unbearable burning sensation in his palms and on the soles of his feet, according to a paper slated for publication in the February issue of the journal Anesthesia & Analgesia.

Greg Palladino , a lacrosse goalie at Southern New Hampshire University, was on a team trip to Bermuda last year when he began suffering a pain that only submersion in ice would alleviate. It was as though broken glass were running through his veins, he told his doctors.

He returned home and was treated repeatedly at area hospitals for weeks. Despite extensive tests, the doctors were baffled, said Palladino's father, Steven. Medicine failed to help, and he lost 55 pounds in weeks.

When Oaklander was called in, she did a skin biopsy that showed conclusively that Palladino's "erythromelalgia" -- his red, burning appendages -- stemmed from severe damage to small nerve fibers that apparently came on because of an auto immune reaction. For some reason, his body had started attacking its own nerve cells.

The biopsy gave doctors the confidence to put Palladino on enormous doses of steroids to stop the auto immune attack, and he has almost completely recovered, his father said.

Palladino was -- in a way -- lucky that he had tissue damage that could be detected; many patients, Oaklander said, have very real pain that is caused by undetected problems in their nervous system, afflicting them with "an invisible disability that leaves no traces."

"It's a wiring problem," she said. "It's like when your oil light on your dashboard goes on, and you think, 'My car must be low on oil,' but you pull over and check your oil and it's fine, and you realize it's an electrical problem. These are people who have electrical problems in their pain system, and their neurons are firing as much as if they had a broken leg, only their leg is fine."

For patients with chronic unexplained pain, the lack of physical proof of their suffering compounds the problem, pushing some as far as suicide.

"You feel like you're malingering, you feel like you're crazy," said Mary Beth Ludington , patient representative for Jim Broatch's group, the Reflex Sympathetic Dystrophy Syndrome Association, which helps people with pain disorder. "I used to feel like a wimp until I was diagnosed. Then it was: 'Hallelujah! I'm not crazy and I'm not a big wimp! There's a reason for this, and a name.' It really validates the suffering that a lot of people go through."

Carey Goldberg can be reached at
© Copyright 2006 Globe Newspaper Company.

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Monday, December 18, 2006

Living in constant pain

Living in constant pain

By John Barnhart
Wednesday, December 13, 2006 10:54 AM EST

Ricky Baker lives in constant pain.

"I always was an outside person," said the 47-year-old Bedford County resident. "I've worked all my life, since seven or eight years old. All I knew was work."

He used to work for the city of Salem as a small engine mechanic. At the same time, he had his own business doing small engine repair, landscaping and mowing.

Now, he can't work with his hands. Some days, he can't even get out of bed. He formerly wore a size nine shoe but now wears size 13 shoes because his feet are swollen. He can't put a boot on because his ankles lock.

He has pain and muscle spasms in his legs and must keep the left leg, which won't bend at the knee, level with the hip. When he gets around, he needs either a crutch or a wheelchair.

Baker has Complex Regional Pain Syndrome/Reflex Dystrophy Syndrome (CRPS/RSD). According to the RSDS Association, a national organization that focuses on this syndrome, it was first described by a Philadelphia doctor named S. Weir Mitchell. Mitchell had been a surgeon in the federal army during the War Between the States and noticed that some men continued to complain about severe pain long after a wound, typically to the arm or leg, had healed.

Normally, CRPS/RSDS, with its hallmark of continual excruciating pain, occurs after some physical trauma and 15,000 Americans develop it each year. However, according to Jim Broatch, the RSDS Association's president, nobody knows what causes it. Even a simple injury can trigger it and many can't think back to a specific incident.

"Even now, we don't know why some people get it and some don't," Broatch said in a phone interview.

Baker can't remember for sure. He recalls having surgery on his shoulder. The syndrome later started in that shoulder, spread to his neck and the opposite shoulder and eventually spread down his left side to his leg, then to his right leg.

It's hard for him to focus his thoughts because of the constant pain.

Another feature of the syndrome is hypersensitivity to touch. Baker said that the shower spraying on his legs sometimes makes them feel like they are being set on fire.

It took him 10 years to get his problem properly diagnosed, a tremendously frustrating process. He finally got a diagnosis after doing Internet research and discovering a description of what he was experiencing. He took this to his doctor and the doctor agreed.

The long wait created a problem. Baker said that he had already deteriorated too much.

"The sooner it gets caught, the better off the people are," Baker said.

Broatch noted that there is no gold standard for diagnosing CRPS/RSDS. He said it's called a syndrome because it's a collection of signs and symptoms. This is why it often spreads from the point where it started to other limbs by the time it's finally diagnosed.

Baker said that the pain first started with bad headaches. At one point, a doctor thought his problem was from pulled muscles in his neck.

As it progressed, his legs began "locking up." There were times when he would crawl in bed and sleep all night with his legs cramped to his chest. Occasionally, it would go away, only to come back worse than ever. They swelled, were discolored and felt hot all the time.

By 1995, he was unable to work.

"I cried my eyes out," Baker recalled. "I felt like it was the end of my life."

Baker sleeps only two or three hours per night. The pain never goes away and sometimes it's so bad it leaves him sweating and sick. He is constantly on pain medication and has to change medications from time to time because their effectiveness starts decreasing.

"I take over 30 some pills a day," he said.

Broatch said that CRPS/RSDS is hard to treat.

"Anyone can have trouble getting treatment because there are no medications indicated for this condition," he said.

According to Broatch, this makes it especially difficult for sufferers who depend on Medicaid to pay for the drug costs.

The pain is so bad and so unrelenting that sufferers sometimes commit suicide. Baker said that he was in Lewis Gale Hospital in Salem at one point and was ready to jump out of a third floor window. Then, he said he saw a Bible, picked it up, hugged it and spent the night hugging it.

"That's what saved me, the Bible," he said.

For more information about CRPS/RSDS, go to the RSDS Association's Web site at or call 877-662-7737 toll-free.

Click Here For The Original Article Online.


Loss of Consortium - Six Figure Settlement Offer

Loss of Consortium - Six Figure Settlement Offer

Editor: John Bisnar
Firm: Bisnar | Chase
December 11, 2006

Last week in a mediation in San Jose, California, a defendant's insurance company offered our client a six figure settlement in a legal malpractice claim. Our client alleged that the defendant attorney, while representing his wife and consulting with both he and his wife regarding her claims, negligently failed to advise him of his right to a loss of consortium claim. The claim was eventually lost due to the passage of time. The settlement conference ended without a resolution of the case. The defendant's attorneys contented that they did not have sufficient authority to pay our client's settlement demand. At not time did the defendant's attorneys contend that their client did not commit malpractice.

The legal theory of "Loss of Consortium" is generally the deprivation, in some degree, of the care, comfort, affection, companionship, cooperation, service and/or sexual relations of a spouse due to an accident or injury. Our client's wife suffered a severe electrical shock from a defective toaster that malfunctioned causing the severe shock. The wife, who is now our client as well, was so severely injured that she is unable to engage in or enjoy, the normal activities of life.

One of the results of the severe electrical shock the wife suffered was contracting Reflex Sympathetic Dystrophy Syndrome (RSD). RSD is a severe, painful, chronic, neurological syndrome also know as Complex Regional Pain Syndrome. RSD is characterized by extreme sensitivity to touch, severe burning pain, pathological changes in bone and skin, excessive sweating and tissue swelling. The wife's case against the toaster maker (defective product) and the operator of the cafeteria where the toaster (premises liability) was located, is set for trial in January 2007.

Click Here For The Original Article Online.


Doctor opens pain center; Wide range of treatments offered in Flint Twp.

Doctor opens pain center; Wide range of treatments offered in Flint Twp. FLINT

Wednesday, December 13, 2006

By Shena Abercrombie • 810.766.6307

Dr. Spencer T. Bertram recently joined the Great Lakes Pain Consultants group and opened an office in Flint Township in October.

The office, at 1059 Professional Village Drive, suite E, is one of three pain management centers in the group.

The office is an extension of the Bay City office of Great Lakes Pain Consultants, which is operated by Dr. Theron Grover, said Jean Smeets, a registered nurse who works with Bertram.

Click Here For The Original Article Online.


RI Blue Cross denies appeal for chronic pain treatment

Pain patient's Blue Cross appeal denied; fundraiser in the works


WAKEFIELD - Blue Cross Blue Shield of Rhode Island has denied Wakefield resident Elizabeth Bergan's appeal for coverage of a medical procedure that could significantly relieve her pain and improve her quality of life.

Bergan, who was diagnosed with Chronic Regional Pain Syndrome (CRPS) and was featured in the Dec. 1 issue of The Times, experiences intense burning and vibrating pain in her legs and feet as a result of the disorder. Swelling and excessive feeling excessively hot or cold temperatures are also some of her symptoms.

Last month Bergan visited a specialist in Texas, who recommended that she undergo a procedure he invented to relieve her symptoms. The procedure would remove scar tissue from the affected nerves in the spinal canal that aggravate her limbs.

Blue Cross, Bergan's insurance provider, rejected her initial request, and rejected her appeal this week, deeming the procedure "experimental." The denial marks her third rejection for coverage. Previous appeals were denied for the same reason
citing a lack of research to support that the procedure is both safe and effective. (The procedure is covered by Blue Cross Blue Shield of Texas.)

Though disheartened by the news and unable to have the surgery as scheduled for Dec. 5, Bergan isn't giving up the fight to end her pain. "I'm still putting one foot in front of the other," she said in a telephone interview Tuesday.

"She's a toughie," said her husband David. "That's why I stick with her."

Family and friends are rallying to find a way to pay for the cost of Bergan's care, which has soared to tens of thousands of dollars since her medical problems began in 2002 following a car accident.

They are working on plans for a fundraiser. They are also considering pursuit of legal action, but the immediate objective is to improve her health.

"Something has got to be done and quickly," said Lee Guilmette, a friend of Bergan's who has been advocating for her care. "Timing is so important now because she's not getting any better."

Depending on Bergan's individual needs, the cost of the procedure could range from $15,000 to $20,000, not including transportation fees, follow-up care and medications, Guilmette said.

The doctor will perform the procedure if a deposit of $8,300 is made to cover doctor fees and some of the hospital expenses.

The main goal is to come up with the cash for the deposit so Bergan could have the procedure as soon as possible.

"It would make her Christmas," Guilmette said.

Anyone wishing further information or to express support can contact Bergan by writing her at PO Box 384, Narragansett, RI 02882.

Click Here For The Original Article Online.


Sunday, December 03, 2006

Chronic pain leads woman to Texas MD, but insurance won't cover procedure

NarragansettTimes, originally uploaded by rsdscrpsnews.

Chronic pain leads woman to Texas MD, but insurance won't cover procedure

By: Julie Novak

Elizabeth Bergan of Wakefield has endured four back surgeries, three neck surgeries and suffers from chronic pain in her back and limbs. A procedure that can provide her with significant relief is not covered by Blue Cross Blue Shield of Rhode Island.


Every day Elizabeth Bergan tells herself, "The more I do, the more I can do.

"It's my mantra," she says.

And every day her pain becomes more unbearable, but that hasn't stopped her from trying to live life to the fullest.

Bergan, 45, was diagnosed with Chronic Regional Pain Syndrome (CRPS) in December 2005. Formerly known as Reflex Sympathetic Dystrophy Syndrome, CRPS typically affects the arms or legs with intense burning or aching pain. Swelling, alternating hot and cold temperatures and sweating are also common symptoms. Bergan experiences them all every day.

"It feels like someone is taking a torch to my feet," she said. "It's like a pager set to buzz; they vibrate 24-7."

For the past year Bergan's symptoms have steadily worsened. She is unable to walk without the assistance of a walker. Her left foot is in a brace to correct "foot drop," a disorder that stemmed from CRPS which prevents her from flexing her ankle. Her right foot is showing early signs of foot drop and her right hand is starting to stiffen.
Medication and physical therapy twice weekly provide little relief. On a scale of 1 to 10, with 1 being no pain and 10 debilitating pain, Bergan never ranks better than a 4 on a good day. For a compassionate athlete who was dedicated to riding her bicycle in marathon races to raise money for people with AIDS, diabetes and multiple sclerosis, the pain - and accompanying treatment - have been difficult to tolerate.

"I miss walking with my husband and my dogs, going out with friends, visiting my sisters, even housework. I can't do these things like I used to," she said.

The emotional toll CRPS has taken on Bergan's life is equally painful. "I feel like a shell of myself," she said.

Bergan's medical problems started in 2002 following a car accident in which she was hit by a truck. She has had four back surgeries and three neck surgeries since to correct injuries she suffered in the accident. The onset of CRPS started shortly after her third back surgery and was aggravated by the fourth in March 2006 when screws were removed from her lower back and scar tissue formed on nerves that affect her limbs.

According to the Mayo Foundation for Medical Education and Research, CRPS most commonly affects people between the ages of 40 and 60. Treatment is most effective when started early.
The cause of the disorder is not clear, though many cases are triggered by trauma to a nerve. Surgery, a heart attack or a gunshot wound are examples of trauma. As in Bergan's case, the disorder can occur after an injury that didn't directly damage the nerves in the affected limbs. Soldiers wounded in the Civil War were some of the first to report symptoms of CRPS and described severe pain even after their wounds had healed.

There is hope for Bergan, though. Through a referral from Dr. Edward Kent, her physician at Rhode Island Pain Medicine in Westerly, she found Dr. Gabor Racz. Racz practices in Lubbock, Texas at the International Pain Institute. Earlier this month Bergan went to see him for an evaluation of her condition. He recommended that she undergo a procedure he is credited with inventing that involves injecting medicine through a catheter inserted into the spine. Called Percutaneous Lysis of Epidural Adhesions, the procedure will remove scar tissue from the affected nerves in the spinal canal and, if successful, relieve her symptoms.

There is one hitch: Blue Cross Blue Shield of Rhode Island, Bergan's health care insurer, will not cover the estimated $25,000 cost of the procedure. After reviewing Bergan's case Blue Cross deemed the procedure "experimental and investigative" at this time.

"It was deemed experimental because there is not enough research to support that it is safe and effective," said Kim Keough, the agency's assistant vice president of public relations. "Unfortunately what is out there in terms of research isn't much. There just isn't enough positive results."

Blue Cross typically consults experts outside of their agency for assistance in evaluating cases involving new procedures or those not currently covered. For Bergan's case they consulted an anesthesiologist and a medical association for a second opinion.

"Initially we review the case, but we also think it's good to get an outside opinion to make sure we're not missing something," Keough said. "We have confidence in their expertise because that's what they do."

Blue Cross covers medication and treatment for pain on a regular basis, but is cautious when adding a new procedure to their coverage plan.

"If we pay for every single one of the experimental procedures we wouldn't be here to provide for our members. We have to be very careful about evaluating procedures," Keough said. When asked why the procedure is covered by Blue Cross in Texas, but not Rhode Island, Keough explained that each Blue Cross office is a separate entity.

"Each insurance company like Blue Cross will determine what their own plan benefits will look like based on mandates and legislation in their state," she said.

With some help from friends and family, Bergan is again appealing Blue Cross's decision not to cover the procedure. She has also approached Senator Jack Reed and Representative Jim Langevin about her case. If the decision is overturned and coverage is approved she will fly to Texas to have the procedure on Dec. 5. If not, she will decide what to do next. To date, the Bergans estimate the cost of her care for medication and office visits since the accident is in the tens of thousands of dollars.

To help Bergan cope with the day-to-day agony, her husband David, co-owner of the Rocky Point Pub in Warwick and former owner of D.B.'s Pizza in Wakefield, has been a staunch supporter. During her trip to Texas he planted three heart-shaped notes in her suitcase to say "Don't worry about a thing, 'cause every little thing is gonna be alright," the lyrics of Bob Marley's song "Three Little Birds."

"He's been there for me since day one," Bergan said.

Her friend Lee Guilmette, president of Windswept Mortgage on Main Street, has also been an advocate for Bergan, conducting research on CRPS, helping her with insurance paperwork and accompanying her to Texas to meet Racz. The two have a close friendship and consider themselves sisters. They used to ride in bicycle races to support those with AIDS, diabetes or multiple sclerosis, something Bergan misses for the camaraderie of spending time with her friend and helping others.

"You knew you were doing it for them because they couldn't do it themselves," she said. "It was very rewarding."

When she is feeling up to it, Bergan continues to volunteer in the Wakefield YMCA's Reading to Rover program. She was one of the first to participate with her dog Marley, visiting elementary schools to teach children how to read. Prior to her surgery in November 2005, Bergan was participating regularly and received an award for her efforts.

"She's always been there for people in need and now she needs some help," Guilmette said. "Timing is of the essence because she's getting worse."

While Bergan is worried about losing her ability to walk and continuing a lifetime of medication to relieve her pain, she isn't giving up.

"The more I do the more I can do," she said. "Even if I don't get better I want to be an advocate for other people so they don't have to go through this."

Click Here For The Original Article Online.


New Trial Sought by Hispanic Woman Crippled by McDonald's

web-newswire, originally uploaded by rsdscrpsnews.

New Trial Sought by Hispanic Woman Crippled by McDonald's
NewswireToday - Tempe, AZ, United States

Verdict of $250,000 limited to emotional distress, despite saga of abusive tactics in denying needed surgeries, disability pay, psychological help and more

New Trial to be Sought by Hispanic Woman Crippled by Mcdonald’s in Case Involving Bad Faith and Nine Years of Abuse of the Legal System

Citing several Superior court trial errors, including jury instructions that severely limited the award of damages last Friday to a crippled Hispanic woman for emotional distress only and ignored the severe pain and suffering caused during a nine-year saga of insurance bad faith and a malicious defense put on by McDonald’s Corp., her attorney announced today that he will ask for a new trial.

On Nov. 18, 2006, the civil jury in Mendoza vs. McDonald’s in Phoenix Superior Court awarded Maria Mendoza, the plaintiff, $250,000 for emotional distress arising out of an injury suffered to her right arm while working as a cook and laborer at McDonald’s in June 1997. The jury was specifically instructed to ignore her pain and suffering, as well as future medical expenses estimated to be over $1 million, lost income (past and future) and other damages, normally considered by juries when determining just compensation.

McDonald’s is self-insured under the laws of workers compensation, and at the time had its own claims adjusters, hence its liability for insurance bad faith if they act unreasonably in handling claims from its own injured employees. At a press conference here today at the Hilton Suites Phoenix, Mendoza’s attorney, Marcus Ambrose, announced plans to seek a new trial and, if a new trial isn’t granted, appeal the decision in the hopes of getting a fair trial “and a verdict sends a message loud and clear that workers have rights.”
Ambrose provided details of deep issues within the Industrial Commission of Arizona (ICA) that allowed McDonald’s attorneys to delay treatments for Mrs. Mendoza and the disability pay she was due. The system also allowed the attorneys to require Mrs. Mendoza to make repeat visits to doctors they had selected (called “doctor shopping” in the insurance defense business) for second, third and fourth opinions in hopes of having one of their “good doctors” issue an often illegitimate basis for denial of surgery, medical treatment, and to cut-off benefits and “get the comp case closed.” These company doctors, who often make big money doing these exams, are known as “closers,” he said.

“The jury rightly determined that McDonald’s had exhibited bad faith in trampling on Mrs. Mendoza’s rights and that she should be compensated,” said Ambrose, who speaks Spanish fluently and has been fighting the case for nine years without pay. “But they didn’t hear the whole truth and were deliberately misled by faulty jury instructions, and by McDonald’s attorneys abusive defense tactics.”
Ambrose said the attorneys for McDonald’s maliciously defended the case by telling the jury to ignore nine years of litigation before the ICA out of which the civil case arose as if it never happened. The ICA litigation included two awards and decisions finding that McDonald’s committed bad faith in handling the claims by Mrs. Mendoza, plus many other favorable findings along the way on her behalf. Further, the attorneys sought to mislead the jury by putting on a malicious defense where they blamed the victim and her attorney, despite the rulings of bad faith against McDonald’s in the case by the ICA.

The jury ignored the ruse, Ambrose said, and while the size of the damage award to Mrs. Mendoza was skewed by the process, the verdict represented a “symbolic victory for Maria and any workers whose workers compensation claims are routinely closed without regard to their rights under the law.”

At a new trial, when a jury is allowed to consider the pain and suffering, inability to enjoy life, her lost wages and the future crush of significant medical expenses she must endure because of this unbelievable trail of abuse, Ambrose predicted that “the outcome will be decidedly different.”

“This verdict represents a miscarriage of justice because the jury never heard the whole truth, but instead was subjected a mantra of misrepresentations by McDonald’s, their attorneys and the doctors they shopped for, to render dishonest medical opinions to mislead the jury.”

In the most recent ruling on October 10, 2006, the ICA found that, once again, McDonald’s wrongfully closed out Mrs. Mendoza’s claim as of October 2005 when they cut off all of her medical care and disability pay – a meager $220 every 14 days upon which she needs to survive since she is unemployable due to her medical condition and has been since the date of the accident in June 1997.

The ICA court reinstated all benefits, including medical and disability pay, and found further that Mrs. Mendoza, as a direct result of the unreasonable denials and delays in medical treatment by McDonald’s over the last nine years, is entitled to and needs “active medical care for her arm injury to include aggressive physical therapy, pain management (for a debilitating disease knows as CRPS, or complex regional pain syndrome) and behavioral treatment and psychological counseling for “major depression” that almost took Mendoza’s life after McDonald’s closed her claim by using diagnoses from two of their “closers.”

“Evidence shows that for more than nine years, Mrs. Mendoza was in severe and unrelenting pain, abused by McDonald’s and the system, discriminated against because she doesn’t speak English, and regularly denied her rights to timely medical care and disability following her accident while working at McDonald’s,” Ambrose said. “The bigger story is the social injustice being carried out day in and day out against unempowered, injured workers in workers' compensation claims/cases across the country. Human rights are being squashed daily and we need serious reform of the system.”

Ambrose said the evidence against McDonald’s is compelling and startling, which began with the first rejection of surgery by claims adjusters after the accident in June 1997 when she slipped and fell while carrying a tray of meat. As she fell, the tray contused her arm against a tray of buns. Mrs. Mendoza tried to continue working the rest of the day. Ambrose said she went home, iced her arm and took pain relievers. Despite the pain, she returned to work for two more days, before her suffering became too unbearable and she sought medical help.

“Mrs. Mendoza just wanted to receive medical treatment and return to work as soon as possible,” Ambrose said. “As a former field worker, the job meant a lot to her. She was extremely loyal. But she soon found herself being rejected at every turn for help. Instead of authorizing an inexpensive 15-minute outpatient surgery for carpal tunnel syndrome as prescribed, that would have returned her to work and full function, McDonald’s adjusters denied the claim. This launched a consistently malicious process to deny surgery, cut off her disability pay and refusal to authorize diagnostic testing or psychological care and pain management.”

Her surgeon, who was part of the McDonald’s medical provider network to treat its injured workers, pleaded with McDonald’s to authorize the surgery. He warned the company that further delay could lead to “permanent dysfunction.” After more than one year of litigation and frivolous and unethical defenses by McDonald’s attorneys, the administrative law judge in the hearings before the Industrial Commission of Arizona (ICA) ordered McDonald’s to authorize Mrs. Mendoza’s surgery – 19 months too late – and ruled that the company had acted in bad faith and that its denial of surgery was unreasonable.

Her symptoms worsened because of the untimely medical treatment, and an upper extremity specialist determined that Mrs. Mendoza now had radial tunnel syndrome (RTS) and scheduled another surgery. McDonald’s denied the surgery and then cut off all benefits.

Click Here For The Original Article Online.


Monday, November 27, 2006

Oakdale woman won't let pain rule her life

TwinCities_comPioneerPress, originally uploaded by rsdscrpsnews.

Oakdale woman won't let pain rule her life
Posted on Mon, Nov. 20, 2006
Pioneer Press

In June 2005, Kristi Caldwell of Oakdale was vacationing with her daughters and friends at Marine on St. Croix. A part-time personal trainer, Caldwell was in good shape. But while waterskiing, she fell, blacked out and, unbeknownst to her, tore her right hamstring off the bone and severed her sciatic nerve. An X-ray didn't reveal the problem, and a doctor told her it would heal on its own. But Caldwell didn't improve, and she was in horrific pain. She got an MRI, consulted an orthopedic surgeon and had surgery immediately.

"When I woke up, I was crying like a baby. I was in severe pain. It wasn't from the hamstring. It was because the sheet was touching my leg. It was a totally new kind of pain. It's like a thousand bee stings under your skin.

"The next day, they (the physical therapists) tried to teach me how to walk on a crutch. I was still having horrible pain on the inside of my thigh. My leg started turning purple and was freezing cold. My foot was like an ice cube.

"My husband was in Iraq at the time. I was living with my sister-in-law. She was taking care of me.

"I went back to the orthopedic surgeon. He barely touched the back of my leg and I just started bawling. He suspected something else was wrong. He told me I had to get into a pain clinic immediately.

"The day I was scheduled to go to the pain center was the day my husband was scheduled to come home. When I met my husband, I was in a wheelchair. It wasn't the homecoming I had planned, but he was just so happy to be home.

"I was diagnosed with reflex sympathetic dystrophy syndrome/chronic regional pain syndrome. More than likely, the trauma of the accident caused me to develop this condition.

"The sympathetic part of the nervous system controls the fight-or-flight response. My nervous system is in that heightened mode. The injured body part becomes extremely sensitive.

"I had been a very devoted gym-goer. With my husband in Iraq, working out got me through the days. I was at the gym at 5:45 a.m. five days a week. To abruptly stop was extremely difficult.

"I was doing sit-ups in bed — a week after surgery. My sister-in-law wanted to kill me. I started doing weights. With the brace, it was really difficult to walk. But I still kept that six-pack, let me tell you.

"For six to 10 weeks after surgery, physical therapists came to my house. You're really not supposed to exercise when you have RSD. They had no idea I had RSD. I was doing things that were good for the hamstring but bad for the RSD.

"RSD will never go away, but I had a 90 percent chance of going into remission when I got in to see the doctor. They gave me three spinal injections to calm down the nervous system, but they didn't work.

"The pain gets so severe you want to cut off the body part. I have to be very careful around knives, heat and cold weather. If I cut my finger, the RSD spreads because of the trauma.

"I take 17 pills in the morning and 13 at night. I also have fibromyalgia, which was under control until the RSD.

"I started going to the YMCA in Woodbury. My physical therapist applies Japanese kinesio tape for the pain. I do healing touch. I get on the Migun thermal massage bed.

"I had a cleaning business, which I had to close down. I go to the Courage Center for job retraining. I started a branch of an RSD support group.

"I just try not to focus on it. I try to stay busy. I'm very involved with my church.

"I have accepted that I am changed. I have bad days where I can't get out of bed or feed myself. But then I just think, 'I'm going to get through this, God.' It might be a couple of days, sometimes a week.

"I'm not going to let it take over my life."

Have you turned the corner toward good health? If so, we want to hear your story. Please e-mail your ideas to (no attachments, please), call Rhoda Fukushima at 651-228-5444, or mail them to Turning Point, c/o Rhoda Fukushima, 345 Cedar St., St. Paul, MN 55101.

For more Turning Points, go to

Click Here For The Original Article Online.


Thursday, November 23, 2006

Local collector of the unusual

boyertown, originally uploaded by rsdscrpsnews.

Local collector of the unusual

By:Jim Davidheiser

Tom Hefner collects sports memorabilia items.

But it's not nearly that plain and simple.

The 39-year-old Douglass (Montg.) Township resident prides himself on remembering "Philadelphia's forgotten teams ... those that started and eventually failed." But Hefner does not limit his searches to local "minor-league" squads.

His favorite memorabilia targets, so to speak, are teams that were affiliated with the defunct USFL of the 1980s.

He's the owner of a seven-foot Reggie White poster, when White played for the Memphis Showboats. And he has a 1986 USFL football autographed by Jim Kelly. (Please take note that the USFL did not even have an '86 season.)

A former auto painter, Hefner has been disabled since 1988, Reflex Sympathetic Dystrophy (RSD) taking a major toll over the years.
"While Muscular Dystrophy affects the muscles, RSD deals with the nerves in the body. The receptors that signal pain are turned on constantly my left side always hurts.

"I don't have full use of my left side, and my driving is limited. I used to go out for physical therapy, but now I do the therapy at home. Some pain medications help."

Those are the bare-bones details of Hefner's disability, in his own words. But he doesn't dwell on it; rather, he exudes passion and excitement as he describes his nearly-fanatical avocation, this hobby of collecting sports-related mementos.

His litany of minor league knowledge is extensive and impressive. Hefner loves to talk about the USFL, including the Philadelphia Stars, who actually garnered a league title in 1983-84. (The USFL suspended all play in August, 1986.)

And that's just the start.

"The Philadelphia Blazers played in the World Hockey Association ... Bernie Parent played for them in '72 and '73. And the Philadelphia Bell was part of the World Football League in '74 and half of '75.

"And there was indoor soccer ... the Philadelphia Fever team folded in 1982 ... the entire Major Indoor Soccer League shut down in '92 ... I have almost all of the Fever programs, but tickets are harder to find."

Hefner resides with his mother, Tama Hefner. His mom plays a part in all of this, as well. It's not unusual for her to sew and repair old sports jerseys that her son adds to his vast collection.

His father, Raymond Hefner, died in 1994 from emphysema-related factors. "It was a slow and painful death ... I hate to see kids smoking these days ...they don't realize that smoking really takes a toll on their bodies."

Tom Hefner actually started collecting baseball cards when he was five years old. "And in the 1980s, I wrote to the USFL and started collecting those (minor league) items."

"Sometimes I find things online ... I've made a lot of good friends who know I collect ... and once in awhile I go to sports collectibles shows."

Why his extreme interest in the so-called "forgotten" teams?

"For some reason, I used to watch the Philadelphia Bell games with my dad. That got me interested in the 'other' teams.
"But I'm still an avid Flyers fan ... hockey is my favorite sport. And I like the NFL, but not as much as the USFL."

Hefner was featured recently in "Tuff Stuff," a magazine which concentrates on sports memorabilia and card-collecting. Writer Kevin Glew did a story on team photos, and Hefner and his colleagues were spotlighted in that piece.

The local collecting-aficionado mentions one of his best friends, Rick Smith, who is also a USFL fan. "Rick actually has a bigger collection than I do ... people refer to him as 'Mr. USFL,' and they call me the 'USFL kid.'"

Hefner's USFL assortment includes stadium banners, a league banner, uniforms, programs, collectible mugs, programs and tickets. "I even have the stadium banner of the New Jersey Generals, a team owned by Donald Trump. And prior to computers, weekly informational sheets were sent out to all the media outlets. I have about 700 of those media sheets."

"Fortunately, this hobby helps to take my mind off of my disability. People know I have a real interest in this ... and that keeps me going. Different league people from the USFL have been good enough to send me information ... I have the 'USFL library' at my house."

On his stubborn disability: "It's been about 20 years ... and it's not getting better, but also not getting worse ... it has only affected my left side ...some people have it all over their bodies ... my physical therapy at home is important."

His disability aside, and his sports memorabilia concentration taking center-stage, he's now focused on developing a "strictly USFL" website. "It's not always easy, but I'm learning the computer functions and slowly developing the website. I've received so many requests from people about this (an extensive website)."

Tom Hefner continues to take his fascinating sports hobby to new heights.

©Berks-Mont Newspapers 2006

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Wednesday, November 22, 2006

B.C. woman’s recipe wins contest

Penny_Freeman, originally uploaded by rsdscrpsnews.

B.C. woman’s recipe wins contest

Linda Jo Scott
For the Enquirer

Clydella “Penny” Freeman never won a contest in her life.

That is, until now.

As the grand prize winner in a Whirlpool “Glory Spirit of Cooking” contest, Penny will receive all new Whirlpool appliances for her own kitchen and a year’s supply of Glory Southern food products.

In addition, her church, Community Baptist Church, will be presented with a free CeCe Winans gospel concert Saturday and receive $5,000 for its building fund.

“On the day I learned that I had won, I was really feeling down,” Penny said. “I’m in a lot of pain all of the time because of reflex sympathetic dystrophy, and I was asking, ‘Why me? I’m not a bad person. Why me?’”

RSD is a chronic neurological syndrome that causes burning pain, swelling and sweating.

Then the call came that Penny, 53, had won the grand prize for an old family recipe for sweet potato pound cake.

“The recipe came from a family reunion cookbook,” she said. “When they called I felt a whole lot better, all of a sudden. But my main reaction was simply, look what God can do.”

Click Here For The Original Article Online.


Friday, November 17, 2006


Keith2, originally uploaded by rsdscrpsnews.


October 2006

Paul Livingstone, Portland Press Herald

If Keith Orsini had started his Organization, American RSDHope, just for others, he would have to count himself pretty successful. Since 1995, the support organization for people who suffer from Reflex Sympathetic Dystrophy Syndrome now is the focus of a popular website based in Harrison, Maine, a successful yearly national conference and, starting early next month (November 2006), (will be filmed by) documentary by filmmaker Barry Adler (of Impactmedia, see link below for additional articles).

According to Orsini, he is just one of eight percent of people with RSD throughout his whole body. Most sufferers have localized pain, typically in the limbs. Orsini said he experiences from head to toe what is commonly described by sufferers as an intense burning sensation.

His symptoms began in 1974 at age 14, and he was told the pain would eventually go away. When he broke his back in a car accident in 1985, the pain spread. Not until 1993 was he diagnosed with RSD, and he later learned it affects as many as 20,000 people in Maine. This abnormal nervous system response can start with a simple injury.

"With RSD there is no way to make you feel better. No one is in a position to help you, it robs you of sleep , short-term memory, concentration, and all of the things that make you a whole person, " said Orsini. Over time, he lost the ability to walk, and had trouble convincing doctors he wasn't "faking" his condition. Shortly after moving to Maine, he found an RSD sufferer who gave him two bags full of RSD literature about the disorder. Until then, he and his parents had very little knowledge about the problem.

With the help of his parents, Lynne and Bob of Harrison - known on the internet as Mom and Dad O - the 46 year old was able to launch a website devoted to support for people with RSD. American RSDHope has a staffed phone number, sends mailings, and holds conferences.

"It was originally intended just to help people in Maine, it has just kind of mushroomed," said Orsini. The website now gets about 25,000 hits a week . "It's really about awareness. There are barely any treatments for this disease," he said.

In 2004, Orsini was just the sixth person given a newlydeveloped treatment using ketamine. When used in low doses, he said, the drug, a powerful tranquilizer often used for horse (and in the emergency room), helps the body re-set the pain cycle to zero. His pain levels immediately dropped to just 15% of what they had been (for the RSD prtion of his pain). His pain has redeveloped over time, but he is scheduled for another treatment this fall.

"Even if it only helps half the patients, in one year we'll have advanced more than in the last 100. It's an exciting time," said Orsini.

For more information about Reflex Sympathetic Dystrophy Syndrome, or CRPS, or American RSDHope Organization, you can visit their website,


I just wanted to add some things to the previous article that was written about me last month.

As is the case in many interviews and articles, as many of you out there can attest to, they are not always able to get the entire story and there are always one or two things that are a little off. The paper only allows so many words of course. Paul, the author of the previous article, wanted to do a longer story but I guess that is the mark of a good journalist right?

As is the case with many journalists, I think he was a little overwhelmed by the whole thing once he learned more about the disease and the extreme impact it can have on people's lives.

I have had the pleasure of talking with many wonderful reporters, newspaper and television, who are surprised by this disease. They are surprised at first because they have never heard of it, shocked when they learn of the devastating pain that is involved, and then excited when they see the potential for a great story. We all have great stories don't we?

It is amazing how this disease can take a fairly normal life and turn it inside out. I always say it is like a bomb is dropped into a family. it affects every aspect of family life not just the patients own body. It destroys finances through the loss of employment as most patients are unable to work; savings dry up as the medical bills pile up.

Many marriages fail as the stress rises. It takes a very special spouse to stick with and by an RSD patient as the Doctors tell one or both the pain is imagined, or that the pain will never go away, or that the patient is a drug-seeker or Doctor-shopper, or maybe it is just the daily battles with symptoms like short-term memory loss, concentration, irritability, insomnia, exhaustion, and the side effects from the medications.

These are some of the many things that are difficult to get across in a typical five or ten paragraph newspaper article or 2 or 3 minute television interview. Another problem I have run into lately, where I am currently doing much better than I have in the past, is that I don't look like I am in pain to the average person. To another chronic pain patient, who knows what to look for, the signs are easy to spot; bags under the eyes, slight hesitation getting into or out of vehicles or chairs, the need to lie down for a few hours every afternoon, etc. Some things that are seen some that are not. But I no longer have the wheelchair I had only a few years ago. I no longer use the cane I did only a year+ ago, so to the average person I look normal . I get those strange stares if I have a bad day and need to use the handicap sticker in my car or on my license plate.

What they don't realize and what is truly impossible to get across to a someone not in the RSD community, be they patient or loved one, is that everything could change in an instant. A little over a year ago I tripped over my cat in the kitchen. In trying not to squish her on the way down, and also not to land on my head, I ended up twisting my back and landing hard on my side. it aggravated my RSD and my lower back problem. I was in physical therapy three times a week for four months. I was having to use my cane and my pain during those six months was very high.

I feel very blessed to be doing so well right now. Those of you who saw me at the conference on November 3rd and 4th, 2006 probably noticed I had lost some weight and my pain level was down from the last conference and definately down from the pictures that are on the website in the RSD Awareness items section. It was due to a combination of factors; walking every day I could in the last year, using the local Bally's Gym (mainly treadmill/Bike), the residual effects of the ketamine infusion, a good course of treatment from a great RSD Doctor (Doctor Paul Muscat of Portland, ME), and I have been following the principles of ACT or Acceptance and Committment Therapy.

Anyway, I got off-topic. Back to the article.

In the article it mentioned that Barry Adler of Impactmedia was filming his documentary. I just wanted to make sure it was clear that American RSDHope is not the focus of the documentary. What is the focus is RSD or CRPS and its impact on the patients and their loved ones as seen through the eyes of BArry Adler, the filmaker. It is his families journey through this process. He will be including many interviews with patients, loved ones, as well as medical professionals.

Now, he came to the conference and filmed the conference for us. He also did quite a lot of interviews, separately, for the documentary. He interviewed many patients and their loved ones abouth their experiences with RSD, including myself and my better half, Petra; she runs, along with Tom Ruggles, our Loved Ones workshops at our conferences.

I wish in the article he was able to better convey the pain I described to him that we endure. I always use the same two analogies; fire ants and limb-on-fire. For those familiar with fire ants, they are typically in the warmer parts of the United States, they are nasty little ants that have a venom they inject when they bite. It burns with a very high intensity. They are usually found in the ground and will swarm when attacked. If you step on a fire ant mound your foot is instantly engulfed in a sock of flaming red ants and it is a pain exactly like RSD.

In the Limb-on-fire analogy I liken RSD to replacing all of the blood in your veins in your limb with lighter fluid and then lighting it on fire. then having it stay that way 24 hours a day, 7 days a week. that is the nearest approximation I can give to a non-RSD person of what it is like. Then they visibly flinch when you tell them you have full-body or systemic RSD and feel that throughout your body. But again, I understand that there is only so much room in a newspaper.

At the beginning of the article he mentions that my pain began at age 14. That is true. I had developed an eye disease called Uveitis. Its chief symptoms were intense burning pain and decreased vision, mainly left eye but affected both. They couldn't find a reason for this though no matter how many tests they ran or specialists they sent me to. The Doctors were quick to point out however that even though they didn't know exactly what it was, they did know that there was no reason for the intense burning pain I was describing.

But they didn't diagnose me with RSD. That would take another nineteen years and an automobile accident. Actually it was a truck accident. I spent the intervening years, 1974 to 1993, going to many Doctors, specialists, etc. (like so many of you) in different clinics in different states. All specialists in their fields in all different fields. All said pretty much the same type of things to my parents and myself;

1) It is all in my head

2) I am making it up to gain attention, especially since there were five kids in our family they were sure this was the case.

3) There was absolutely no medical reason behnd my complaints of burning pain, sleeplessness, sensitivity to light/sounds/vibration, etc.

4) I was Doctor shopping until I found one who would agree I was "sick"

5) I was just looking for medication.