Monthly Archives: June 2008

Man with rare disease in race against time for experimental procedure

Written by MOORE, RUSSELL J.
Thu, Jun 26 08

By RUSSELL J. MOORE

On a constant basis, Matthew Irving suffers from an unbearable amount of pain that civil people wouldn’t wish on their worst enemies.

In 2003, at the age of 16, Irving excelled at North Providence High School. He was an honor student who participated in the academic decathlon and Science Olympiad, was a certified lifeguard, and was on his way to earning his black belt in Karate.

A bird lover, he hoped to become a veterinarian someday.

But disaster struck when Irving underwent a basic surgical procedure to correct relatively minor problem with his foot. He was born with one leg slightly shorter than the other, and he had a procedure on one foot to correct the problem a few years prior.

Almost immediately after the surgery on his second foot, he felt something wasn’t right.

Three months later, his doctors confirmed what he already knew—something wasn’t right.

They diagnosed him with Reflex Sympathetic Dystrophy (RSD)/ (CRPS) Complex Regional Pain Syndrome which involves chronic, excruciating, burning pain, pathological changes in bone and skin, excessive sweating, skin discoloration, and extreme sensitivity to touch, light, and sound.

RSD is a debilitating and chronic syndrome, which gets progressively worse as time moves on.

RSD has a variety of treatments, all of which have had little or no positive effects on Irving.

At first, Irving dealt with the problem relatively well—though even early on he’s been confined to a wheelchair, as the act of standing became unbearable. Nevertheless, was able to attend school, and eventually received his degree.

He then went on to attend Rhode Island College, but was forced to drop out a year ago when the pain became too severe.

As time passed, his condition worsened. At this point, he’s 21, and the pain he deals with on a continual basis is excruciating.

Desperate, and with no options left in the United States, his parents, Nancy and Russell Irving, are hoping to send Matthew to Germany, just outside of Frankfurt, where he will have an experimental treatment not yet offered in the United States, because it isn’t yet approved by the FDA.

The treatment involves putting Matthew into a medically induced coma for anywhere between 5 and 19 days. The result, according to Russell Irving, Matthew’s father, will be a “rebooting” of his system. That, he said, would give Matt at least 3-5 years before the symptoms of RSD return.

In the meantime, the Irvings are hoping scientists will find better treatments, and perhaps a cure for the condition.

The problem, said Russell Irving, a programmer for the state, is that their insurance company won’t cover the costs of the trip. Similarly, the company hasn’t covered many of their son’s treatments, forcing them to pay out of pocket.

“We’ve maxed-out all of our credit cards and re-mortgaged our house three times trying to help him. At this point, I can’t produce for him anymore but what I can do is spread the word in any way possible,” said Russell Irving.

And timing has also become a very sensitive issue. The rules of supply and demand are stacked against Irving. While, relatively speaking, very few people have his type of disease, there are even fewer still specialists to treat it.

Therefore, the German hospital, which administers the treatment has a strict waiting list, and deals with logistical and time constraint issues.

At this point, Russell Irving said, the German hospital could call at any minute and ask Matthew to come to Germany for the procedure.

If the family doesn’t have $75,000 to pay for the treatment, Matthew would have to be placed on the back of the list. Irving said that would be devastating for his son—who may not live that long.

They’ve received donations of as little as $1 from individuals with notes saying “this is all I’ve got.”

Last weekend, a group of North Providence high school students hosted a car wash, which netted close to $5,000.

In sum, the family has raised over $40,000 thus far, but is still far short of their target.

“I believe in my heart we can get him to Germany. This is going to be a story about the community of Rhode Island rallying around him. If someone could see what’s inside of him they’d understand,” said Russell Irving.

“But the timing is so critical at this point,” said Irving.

“This is his only option left. He’s gone through everything he could in America, and he deserves this opportunity. He’s a young man with so much to offer.”

Those who wish to help the Irvings can do so by visiting his website http://www.setmattfreeofRSD.com. There, donations can be made by online, and additional information is available on where to send donations by mail.







Click Here For The Original Article Online.






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Bisphosphonate therapy of reflex sympathetic dystrophy syndrome

Concise reports

Bisphosphonate therapy of reflex sympathetic dystrophy syndrome S Adami,a V Fossaluzza, D Gatti,a E Fracassi,a V Bragaa

a COC di Valeggio, University of Verona, Valeggio, Verona, Italy , b Ospedale di Udine, Italy

Correspondence to: Professor S Adami, Ospedale di Valeggio,37067 Valeggio s/M, Verona, Italy.

Accepted for publication 27 November 1996

OBJECTIVE---The reflex sympathetic dystrophy syndrome (RSDS) is a painful limb disorder, for which a consistently effective treatment has not yet been identified. The disease is associated with increased bone resorption and patchy osteoporosis, which might benefit from treatment with bisphosphonates, powerful inhibitors of bone resorption.
METHODS---Twenty patients with RSDS of foot and hand, were randomly assigned to blind administration of either alendronate intravenously (Istituto Gentili, Pisa, Italy) 7.5 mg dissolved in 250 ml saline solution or placebo saline infusions daily for three days. Two weeks later all patients had an identical treatment course with open labelled alendronate (7.5 mg/day for three days), independent from the results of the first blind treatment.
RESULTS---In the patients treated with blind alendronate the diminution in spontaneous pain, tenderness, and swelling (circumference of the affected limb) and the improvement in motion were significantly different from baseline (p the first two weeks in the control group (p 2 to week 4 (p no relevant symptomatic changes were observed after the first two weeks of follow up, but they responded to the open alendronate therapy given afterwards. In 12 patients with RSDS of the hand the ultradistal bone mineral content (BMC) of the affected arm was considerably lower than that of the controlateral arm (mean (SD)) (426(82) mg/cm versus 688(49)). Six weeks after the beginning of the trial BMC rose by 77(12) mg/cm (p arm, but it did not change in the controlateral.
CONCLUSIONS---These results indicate that bisphosphonates should be considered for the treatment of RSDS, producing consistent and rapid remission of the disease.


© 1997 by Annals of the Rheumatic Diseases


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Dawn Marie battles to help ailing sister-in-law

Dawn Marie battles to help ailing sister-in-law

By KENAI ANDREWS – SLAM! Wrestling


Dawn Marie, her sister-in-law Carrie Deussing, Christy Hemme, and Nikolai Volkoff at Wizard World in May 2008.

Former WWE personality Dawn Marie Psaltis is looking to raise $50,000 with a Red Carpet benefit dinner to help sister-in-law Carrie Deussing, who is currently afflicted with Reflex Sympathetic Dystrophy (RSD), undergo treatment. RSD is a progressive nerve disorder that attacks the central nervous system.

The benefit is scheduled for September 14 at the Holiday Inn in Edison, New Jersey, featuring many guest appearances from the wrestling community.

“I’m really looking forward to doing the RSD foundation because I’ve been so far removed for so long,” Dawn Marie told SLAM! Wrestling in a phone interview from her home in Edison. “I’m actually looking forward to hanging out with them and just having some fun, and also thanking them.”

RSD produces chronic and extreme amounts of sharp burning pain which feels like standing in the middle of a raging inferno. An extreme sensitivity to touch, a condition called Allodynia is usually present as well, which makes the slightest touch, sharp sound, clothing or breeze trigger the pain sensations.

It is why Deussing calls the process of recovery “taming the flame.”

The symptoms can include inflammation, spasm in the blood vessels and muscles of the extremities, back or torso, and insomnia or emotional disturbance.

There is no known cure for RSD.

Speaking with SLAM! Wrestling on the phone from her home in Plymouth Meeting, Pennsylvania, the personable Deussing, 31, explained how her life was turned upside down after returning from an Aruba vacation in July 2007. “I started experiencing some symptoms on the left side of my body, in my torso area. We weren’t really sure what they were, and they looked me up for kidney stones and that came up negative and the symptoms spread down my left leg. The symptoms were a burning ravishing pain which felt like being stung by thousands of bees at the same time. Then it went up my left arm and then my co-workers decided to take me to the hospital.


Carrie Deussing before being afflicted with RSD.

“I’m progressively getting worse every day. I cannot walk without assistance,” she continued. “I have a wheelchair; I’m waiting to get a motorized one and just cannot do the things I used to do around the house.

“I was a workaholic. I loved my job and worked all the time. Probably too much. I worked for a medical management company. I was always connected to the office through my laptop.”

Deussing was diagnosed initially by Dr. Philip Getson and confirmed by Dr. Robert Schwartzman, Professor and Chairman of Drexel University College of Medicine, Department of Neurology in September of 2007. Upon further evaluation, he recommended an experimental treatment called the Ketamine coma. The patient, in a coma state, is administered a high dosage of Ketamine, a horse tranquilizer. The most advanced cases are referred to Germany because Ketamine is a class-3 drug in the U.S., with only low dosages legally allowed.

However even in Germany, there is a waiting list for treatment that extends to 2010.

Deussing plans to travel to Monterrey, Mexico to undergo an alternative treatment program pioneered by Dr. Anthony Kirkpatrick.

According to information on Deussing’s RSD Foundation website, the treatment “resets the link between the pain sensory neurons and the brain. The coma calms the nervous system and ‘reboots’ the patient, much like a computer. After the fifth day, they slowly wake me up. The goal is to wake up pain free.”

Fortunately in Deussing’s case, the disease was caught early, significantly increasing her chances for recovery. The tentative day for treatment is July 17.

“My expected length of stay should be about 2-1/2 weeks if there are no major complications,” Deussing said.


Carrie and husband Arthur in December 2006.

After some physical therapy and the occasional IV Ketamine infusion, Deussing can resume living a life that many people take for granted.

“I’m going to find some hobbies,” she said confidently. “I’m going to continue this foundation and when I don’t need the funds, I plan on giving it to other people that need the funds, raising awareness because this disease is not well known. People need to learn about it, and there are a lot of people out there that have it that need funds.”

“I’ve had fans that have donated $500 and fans that donated $1,” Dawn Marie said. “Not one is more exciting to receive than the other. Just to have someone care enough about my family and help us is just wonderful. If every fan donated just 50 cents, we would be so much closer to our goal. It doesn’t have to be a large donation. People feel, ‘I can only donate a dollar; I can only donate two dollars.’ Trust me, it’s sorely needed.

“If I had the money, I would give it to her, but I have been out of work for so long now it’s impossible,” said the former ECW and WWE Diva. “I mean I’ve given her a few bucks, but nowhere near what she needs. This is all I can do to contribute at this point.”


Dawn Marie in May 2008.

Along with Deussing’s resolve, RSD has failed to conquer her love of professional wrestling. “Back in Dawn’s days is when I was really into it,” she said with a laugh. “It’s kind of addictive. You put it on, you start watching it, and you want to watch the next episode. Now I watch it every so often.”

Asked to comment on her sister-in law’s efforts, Deussing was unable to suppress the emotion in her voice. “Dawn has been absolutely amazing,” she gushed. “She has been so helpful through all of this.

She also acknowledged TNA’s Christy Hemme who was at the May 2008 Wizard World convention. “Christy was in the booth next to us; she was so nice and assisted with crowd control and made sure that no one bumped my wheelchair when it got crowded since something as simple as that causes me severe pain. She gave me an autographed picture and was just great,” said Deussing. As of this week, approximately $31,000 has been raised so far through donations and previous fundraising events.

EDITOR’S NOTE: If you would like to help Carrie Deussing, tax-deductible donations can be made to: The Carrie Deussing RSD Foundation, Commerce Bank, 601 College Drive, Blackwood, NJ, 08012

Donations can also be made through the Carrie Deussing RSD Foundation website

Click Here For The Original Article Online.

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Feel the pain and do it anyway

Feel the pain and do it anyway

Maxine Pye draws on her own experiences to help people cope. Photo / Graeme Sedal

Maxine Pye draws on her own experiences to help people cope. Photo / Graeme Sedal

Maxine Pye’s experience of excruciating pain led to a new career helping others cope with it and death.

Now 44 and the family support team leader at North Shore Hospice Trust, Pye has lived with complex regional pain syndrome (CRPS) since 1996. Overnight, the upper left side of her body was paralysed. Back then, she didn’t know what caused it but now she puts it down to an acupuncture needle hitting a nerve.

Pye’s husband, Phillip Howe, became her caregiver. She could not work for two years as they adjusted to her condition.

She spent many hours contemplating the past and future. That sort of contemplation is something the patients at the trust’s hospice can identify with.

The trust is a not-for-profit organisation providing up to 10 in-patient beds for people who need 24/7 respite care, or help with symptom management, or who are terminally ill and choose to die at the hospice. It is a palliative care provider for the Waitemata District Health Board.

“My dad died the day before my 19th birthday in July, 26 years ago,” Pye says. “Back then, there was no hospice around.

“After his death, I asked if I could join the Cancer Society as a volunteer. At that time, they had a two-year step-down period (after experiencing the death of a loved one) and I was only 19, so they were concerned about that.”

In those two years of waiting, Pye travelled and her wish to work with the society or something to do with illness and grief was overtaken by corporate life.

She became an office manager. Nonetheless, “I could still always feel the disease and death thing pulling me.”

After her experience, Pye needed help washing and dressing as well as special equipment to cope with everyday tasks such as cooking.

“Living in pain is exhausting and it took up a lot of the day, trying to work through that pain.”

The loss of independence hit her hard. “Being the positive person that I am, I thought that it is my opportunity to do something along the counselling line and in the grief area,” she says.

But she could not sit or concentrate for long as she was having pain spasms. Pye did a six-month course in community studies over two years at AUT’s Akorangi campus.

“While I was doing that I came to the hospice to start volunteering in 1999. I wanted to see if that was really the area in which I wanted to go in my career.”

From there, and with the hospice counsellor’s help, Pye enrolled at Unitec for the three-year, full-time course Bachelor of Social Practice, majoring in counselling.

“Because of my condition, I couldn’t do it over three years. I did it part-time over four.”

She graduated with a diploma of social work and a degree in counselling and, in September 2004, began work as a counsellor/social worker at the hospice.

Pye is convinced the accident brought an inevitable career change forward.

“If I hadn’t had my accident, I don’t know if I would have got here as soon as I have, but I think I would have eventually got here, because I love it.”

Turning 40 often helps people re-evaluate their lives, she says. “The accident forced me and my husband to do that earlier than the natural scheme of things.

“I live in constant pain but, because of medication and the wonderful pain clinic at Auckland Hospital, I have techniques within me so I can control it. I never dreamed that I would be back to doing five days a week and loving it.”

While many people may regard those who work in palliative care as especially caring individuals, Pye believes it takes special people to do whatever job they are doing.

“I could not be a palliative nurse, those girls are amazing. Nursing is about getting somebody better, while our nurses are making their patients as comfortable as they can in a physical space.

“I love talking and listening, so I am better in my role.”

The hardest part of Pye’s job is if a family asks her to sit with them when a family member is dying.

But the best thing is hearing people’s stories.

“For me, I feel extremely privileged and humbled that people share their stories at this time in their lives and allow me to do my job.

“It never ceases to amaze me how we are welcomed into their lives.

“A lot of people at this time can stop communicating within their family. We can go and help reopen that again. People just need to offload and talk about what is going on for them, if they are the one that is dying or surviving, especially the ones that are surviving, how they are going to survive and adjust with their loved one not there.

“On the social work side, finance can be a big issue, especially if one has to give up work. It’s about helping them network to the right agency or group, network back to their community. At times like this, people can forget who is around there for them and it is part of our job to help them open it up again and help them see that.”

Self care is an integral part of Pye’s role.

“You have to be a type of person who is really on to the self-care when you are surrounded by death and dying.”

Plus, she has the challenge of coping with her own constant pain.

“I really try to enjoy life. As you walk in here every day, it is a constant reminder.”

She loves four-wheel-driving, boating and fishing, plus cooking, drinking and enjoying good company.

This week is National Volunteer Awareness Week.
For more information, see www.volunteeringnz.org.nz


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Musicians band together to help ill stage tech


Supporting acts

Musicians band together to help ill stage tech

By BROOSE TULLOCH, SUN MEDIA

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This project has the seeds to grow.

So says Howard Mandshein, director (and Friday night emcee) of the Musicians Help Project, capturing the vision, the optimism and the need for a non-profit group that can assist local musicians, crew members and roadies with temporary support for their health related issues.

The Musicians Help Project kicks off tomorrow at the Garrick Centre, featuring a Who’s Who of the Manitoba music scene: Harlequin, Kenny Shields (Streetheart), the Pumps/Orphan, and Greg Leskiw (Swing Soniq, Kilowatt, Mood Jga Jga, and the Guess Who) have all represented ‘Peg City on the world stage.

“I had the idea for years,” says founder George Belanger of Harlequin, “but things happen for a reason and a friend in need is a friend indeed. So I said, ‘Let’s do it!’ ”

That friend is stage technician Blair Webber, who was diagnosed in 2004 with Complex Regional Pain Syndrome. The rare nerve disease has left Webber in constant pain, has no known cure or treatment, and makes everyday tasks difficult. The three-and-a-half-year ordeal continues to drain his savings, with mountains of medications and weekly hospital visits being the only means of managing the pain.

Doing what friends do in Winnipeg, Belanger picked up his little black book . “It was so easy,” he says of the level of co-operation. “The music community always responds immediately.”

Manitobans, according to the Fraser Institute report, are the most charitable Canadians on record, and Belanger says he’s humbled by their spirit of giving as he reads a shopping list of donors.

“All they want to know is how can they help. And it comes from the goodness of their heart,” he says.

Mandshein, who hosts a weekly live music showcase at Mona Lisa Ristorante, shares a similar experience.

“People always come up to me (and ask), ‘Do you know so-and-so? They need help?’ Any time that happens, nine out 10 musicians just ask, ‘When and where and what do you need?’ And they don’t know these people! What does that tell you?”

Kevin Donnelly, senior VP at True North, quickly stepped up to the plate with a boatload of prizes. He also brought along heavy-hitting “friends” Ticketmaster and Centerplate to provide tickets and concessions.

“I have known Blair for a long time — both personally and professionally — and know Blair to be a salt-of-the earth, solid guy,” says Donnelly. “As someone who has family in the music business, I am aware of the lack of a formal safety net.”

Musicians are among the estimated 70,000 self-employed in Manitoba, many of whom are often unable to afford insurance. And even with over 700 members, the Manitoba Audio Recording Industry Association still finds medical coverage doesn’t come easy.

“We did investigate a group medical plan,” explains Sean McManus, volunteer co-ordinator with MARIA. “But we were not able to find a plan that was both effective and affordable for the members.”

Doors at the Garrick open at 6 p.m. tomorrow, with music set to get underway two hours later.

For more info, see www.musicianshelpproject.com.

Musicians Help Project

Where: Garrick Centre

When: Fri., June 20

With: Harlequin, Kenny Shields, The Pumps/Orphan, Greg Leskiw

Tickets: $30 @ Ticketmaster; admission $40

Click Here For The Original Article Online.

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Swiss study in mice may lead to new pain drugs

Swiss study in mice may lead to new pain drugs

Wed Jan 16, 2008 2:49pm EST

17 Jun 2008

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By Julie Steenhuysen

CHICAGO (Reuters) – Enhancing a natural pain-filtering mechanism in the spine helped relieve chronic pain in mice without the unwanted side effects of current pain relievers, Swiss researchers said on Wednesday.

They honed in on a specific molecule that helps prevent chronic pain signals from reaching the brain, without blocking normal pain messages that alert people to danger.

And they said their experiments in mice may point the way to better drugs in humans.

“Our approach addresses primarily chronic pain,” said Hanns Zeilhofer of the University of Zurich in an e-mail.

He said analgesics such as aspirin can cause stomach ulcers, while opioids such as morphine make patients sleepy and are addictive.

Zielhofer’s idea was to find a way to trick the body into intercepting pain signals before they cause havoc in the brain.

“We know that normally the spinal cord acts as filter for pain signals. It prevents most of the pain signals from reaching the brain, where pain becomes conscious,” said Zeilhofer, whose study appears in the journal Nature.

Zeilhofer’s team focused on a molecule called GABA that that can inhibit pain signals.

A class of drugs called benzodiazepines, which include diazepam — better known as Valium — bolsters the action of this GABA molecule in the central nervous system. The drugs are used to treat things like anxiety and insomnia, but when injected near the spine, these drugs also relieve pain.

“Problem is, they must not be used in chronic pain patients because of undesired effects that they have in the brain,” Zeilhofer said in an e-mail. “They make patients sleepy, they impair memory and can cause addiction.”

But benzodiazepines target at least four different GABA receptors that mediate pain control.

“These receptors turned out to be predominately present in the spinal cord and occur in the brain at much less density,” he said. By targeting just two of the GABA spinal receptors, they might be able to make a drug that could be used for chronic pain without losing potency or making people sleepy.

To test this, the researchers used genetically engineered mice to target only the GABA receptors in the spine. Then they irritated nerves in the paws of mice, making them more sensitive to touch and measured how fast the mice pulled away when gently touched.

“When we treated the mice with the right drugs, their sensitivity to this touch became normal again,” Zeilhofer said. And it worked without unwanted sedation or impaired motor function.

“Normal pain, however, was retained. This is important because normal pain has a protective function as it warns us of tissue damage,” he said.

They also used brain scans on rats to see how the drugs worked in certain pain centers that control both the sensation of pain and the feelings of anxiety that pain can produce. The scans showed the drugs reduced pain in these brain regions.

Zeilhofer said the study showed that targeting specific GABA receptors may provide a promising new target for drug development. “The next big challenge will be to develop drugs which work in humans,” he said.

(Editing by Maggie Fox and Cynthia Osterman)

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Complex regional pain syndrome 1 – the Swiss cohort study

Study protocol

Complex regional pain syndrome 1 – the Swiss cohort study

Florian Brunner email, Lucas M Bachmann email, Ulrich Weber email, Alfons GH Kessels email, Roberto SGM Perez email, Johan Marinus email and Rudolf Kissling email

BMC Musculoskeletal Disorders 2008, 9:92doi:10.1186/1471-2474-9-92

Published: 23 June 2008

Abstract (provisional)

Background

Little is known about the course of Complex Regional Pain Syndrome 1 and potential factors influencing the course of this disorder over time. The goal of this study is a) to set up a database with patients suffering from suspected CRPS 1 in an initial stadium, b) to perform investigations on epidemiology, diagnosis, prognosis, and socioeconomics within the database and c) to develop a prognostic risk assessment tool for patients with CRPS 1 taking into account symptomatology and specific therapies.

Methods

Prospective cohort study. Patients suffering from a painful swelling of the hand or foot which appeared within 8 weeks after a trauma or a surgery and which cannot be explained by conditions that would otherwise account for the degree of pain and dysfunction will be included. In accordance with the recommendations of International Classification of Functioning, Disability and Health (ICF model), standardised and validated questionnaires will be used. Patients will be monitored over a period of 2 years at 6 scheduled visits (0 and 6 weeks, 3, 6, 12, and 24 months). Each visit involves a physical examination, registration of therapeutic interventions, and completion of the various study questionnaires. Outcomes involve changes in health status, quality of life and costs/utility.

Discussion

This paper describes the rationale and design of patients with CRPS 1. Ideally, potential risk factors may be identified at an early stage in order to initiate an early and adequate treatment in patients with increased risk for delayed recovery.

Click Here For The Original Article Online.

Click Here for the full study (PDF)

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