Monthly Archives: July 2012

Research: Reflex sympathetic dystrophy treated by electroconvulsive therapy #ECT

Reflex sympathetic dystrophy treated by electroconvulsive therapy: intractable pain, depression, and bilateral electrode ECT.

Authors

King JH, et al. Show all

Journal

Pain. 1993 Dec;55(3):393-6.

Affiliation

Department of Behavioral Medicine and Psychiatry, West Virginia University School of Medicine, Morgantown 26506.

Abstract

An adult female patient without previous history of pain or psychiatric disorder developed reflex sympathetic dystrophy (RSD) in her left hand and arm after 2 separate injuries, and subsequent arthroscopy and arthroscopic surgery. Traditional management with systemic medications, nerve blocks, and behavioral pain management were unsuccessful. With subsequent development of depression and suicide attempt, electroconvulsive therapy (ECT) was administered using bilateral lead placement. Total resolution of her pain occurred for several hours after the first treatment. Over the course of the full ECT series the pain, vasculature changes of RSD, and depression resolved completely. Prominent psychiatric disturbances were complications arising after ECT and the resolution of the RSD, and during long-term follow-up. A review of the literature from the 1940s revealed numerous cases of chronic, intractable pain treated successfully by ECT, although none of the case series were controlled studies. More recent literature questions if ‘modified’ ECT, using unilateral lead placement, is less effective than bilateral lead placement, in treating pain syndromes. Resolution of the vascular changes of RSD after ECT raises questions of possible cerebral contributions to the pathophysiology of RSD.

PMID

8121702 [PubMed – indexed for MEDLINE]
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People: Twenty-Three Duos Pass Veterinary Inspection for 2012 United States Equestrian Federation Paralympic Selection Trials

Twenty-Three Duos Pass Veterinary Inspection for 2012 United States Equestrian Federation Paralympic Selection Trials

Submitted on 06/11/2012 to
Written by Lindsay McCall
Robin Brueckmann and Radtezky at the 2012 Paralympic Selection Trials/ National Championships (Photo: Lindsay Y McCall)

Robin Brueckmann and Radtezky at the 2012 Paralympic Selection Trials/ National Championships (Photo: Lindsay Y McCall)

Gladstone, NJ -June 10, 2012 – In 2008, five Para-Equestrian Dressage riders competed in the United States Selection Trials for the Beijing Paralympics. Four years later twenty-three horse and rider combinations earned the right to compete at the 2012 United States Equestrian Federation (USEF) Paralympic Selection Trials. Dr. Stacey Kent, DVM, FEI Ground Jury member Carlos Lopes 5* (POR), and USEF Dressage Team Vet Dr. Rick Mitchell, DVM were on hand to evaluate each horse during Sunday’s veterinary inspection. Each horse passed with flying colors shifting the rider’s focus to the next three day’s of competition. From June 11-13 Para-Equestrian athletes will compete at the United States Equestrian Team Foundation (USET) headquarters in Gladstone, New Jersey. Running simultaneously with the Selection Trials is the 2012 USEF Para-Equestrian Dressage National Championships. Overall scores for both the Paralympic Selection Trials and National Championships will be calculated using 40% of the Team Test, 40% of the Individual and 20% of the Freestyle Test Score. With only four spots on the United States Para-Equestrian Dressage Team headed to London it will be crucial that each test is precisely executed.

Jonathan Wentz watching the jog at 2012 Paralympic Selection Trials/ National Championships (Photo: Lindsay Y McCall)

Jonathan Wentz watching the jog at 2012 Paralympic Selection Trials/ National Championships (Photo: Lindsay Y McCall)

During the three days of competition FEI Ground Jury members, Carlos Lopes (5*) POR, Anne Prain (5*) FRA, and Marc Urban (5*) BEL will evaluate each duo on their interpretation of their respective tests. These critiques will be valuable since equestrians will see these judges again when they qualify for London. Lopes and Prain are members of the ground jury and Marc Urban is the Assistant Technical Delegate for the Paralympics.

Many of the riders competing in the Selection Trials have felt the competitive environment of a show of this caliber before. 2008 Paralympic Team members Robin Brueckmann and Rebecca Hart have returned for another opportunity to represent the United States. Both of these riders represented the United States in Hong Kong and once again at the 2010 Alltech FEI World Equestrian Games™ (WEG) in Lexington, KY. As seasoned riders there are always new variables. In November 2011 Robin Brueckmann had her right leg removed due to Reflex Sympathetic Dystrophy. After years of pain and lacking motor function Brueckmann spoke to many doctors about the possibility of amputating her leg. Together they made a carefully contemplated decision to amputate her leg. In three months she was riding in a three-star Para-Equestrian competition with her trusty horse Radetzky. Rebecca Hart will be riding Lord Ludger during the Selection Trials and National Championships. Hart earned top scores throughout 2012 and has added a new horse for the Trials, Carlingsford’s Taldi.

Kai Handt jogging Silvano for Jonathan Wentz at 2012 USEF Paralympic Selection Trials/ National Championships (Photo: Lindsay Y McCall)

Kai Handt jogging Silvano for Jonathan Wentz at 2012 USEF Paralympic Selection Trials/ National Championships (Photo: Lindsay Y McCall)

2011 USEF Para-Equestrian National Champion and 2010 WEG rider Jonathan Wentz has had a banner year and is looking forward to riding NTEC Richter Scale and Silvano in his first Paralympic Selection Trials. His hard work and dedication has paid off in 2012 earning an Individual World Ranking of 10th overall.

In only four years the number of Para-Equestrian competitors multiplied. In 2010 Erin Alberda, Kim Decker, Wendy Fryke, Laura Goldman, Mary Jordan, Kim Jones and Elizabeth Pigott, were there when the 2010 WEG Selection Trials occurred. The WEG Trials was the first time the number of Para-Equestrians in the United States reached 20. It was also the first year Para-Equestrian Dressage became the eighth discipline represented at the World Equestrian Games.

Donna Ponessa at 2012 USEF Paralympic Selection Trials/ National Championships (Photo: Lindsay Y McCall)

Donna Ponessa at 2012 USEF Paralympic Selection Trials/ National Championships (Photo: Lindsay Y McCall)

In 2011, Eleanor Brimmer, Dale Dedrick, Laurietta Oakleaf, and Donna Ponessa joined the Para-Equestrian competition ring and climbed the ranks to earn top scores in their Grades and represent the United States internationally.

In 2012, former event rider Margaret McIntosh became a Para-Equestrian and young rider Sydney Collier joined the team. These riders are just a handful of riders that have become a part of the Para-Equestrian discipline over the last few years. After four years the sport continues to grow and the exceptional competition that will be showcased in Gladstone will be a Trials to remember.

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People: BHS Senior Concert Examines Two Lives Touched by Pain

BHS Senior Concert Examines Two Lives Touched by Pain

A recital celebrates a family’s triumph over debilitating conditions.

Branford High School senior Sarah Talbott pulls out the piano bench and takes a few battered pages of sheet music from the small storage space inside.

“This is my favorite piece of music,” she says, and places a selection from the score of the filmPrince of Egypt on the music stand. She’s practicing, getting ready for her moment in the spotlight. On Friday, she’s performing her senior project, an original piece of music called“Internal Heroes: Hidden Pain.”

“It’s my first time really writing a song, going off of nothing. But I’m one of those people who’s always writing a song in their head,” she says.

Talbott is a music lover – she says she “lives, breathes, and sleeps music” – and the concert is a big moment for her. It’s a chance for her to tell two stories. Because both Sarah and her mother, Deborah, deal with debilitating conditions. They’re the kind a lot of people can’t imagine. In fact, most people don’t know they exist.

In 2007, Sarah was diagnosed with RSD — Reflex Sympathetic Dystrophy. It’s a neurological condition that causes intense pain in her legs, coupled with blinding migraines. The same year, her mother was diagnosed with a traumatic brain injury as the result of a 2002 car accident. Both had lived with the conditions for years in Illinois, where Deborah worked as a pastor in the United Methodist Church, without receiving the proper treatment. In fact, Deborah didn’t even know she’d received a brain injury. She remembers the shock of learning how serious her injuries were when she met a woman who’d gone through a similar accident.

“She’d had the correct care from the very beginning, and was describing her accident and her injuries,” Deborah says. “And I said, ‘Oh, that’s what that is!’ It was the first time I’d had any idea I had paralysis. I just hadn’t known. I’d just kept working through it because I didn’t know any other way.”

Pulling Through, Thanks to Top Care and Good Friends

The family — Deborah, her husband Brent, and their children, Sarah, Amos and Ally — relocated to Branford in 2007. Sarah started receiving therapy at Boston’s Pediatric Pain Rehabilitation Center, a top program for treating RSD. When she started the program, she was in a dark place — barely able to walk and virtually bedridden by the pain. She spent months in and out of school, missing most of several semesters.

“It was really hard at the beginning,” she says. “I don’t think I spent more than a day at the hospital not crying. The pain was so bad. But I knew I wanted to do it. I wanted to go back to school to be with my friends.”

And with the help of sympathetic staff and some very good friends in Boston, she started the huge task of bringing her life back to normal. She smiles when she remembers her best friend, Sammy — the two met at a point when neither could walk and both looked at the future bleakly.

“She gave me the strength to want to keep going forward, because she wanted to go forward,” Sarah says. “We held onto each other every time we walked. And she took her first steps while I was there. It was literally like watching a baby walk for the first time. And that’s truly what made me realize I could do this. If she can do it, I can.”

Sarah says Sammy felt the same — and the two fed off each other’s ambition. Then the day came when Sarah had to fight through the pain and literally get back on her feet.

“And I don’t know how I did it, and I don’t know if I’ll ever be able to describe it,” she says. “I just did it. It was kind of like my brain shut off for a minute, and my body took over. And then when my brain came back on, it was just like … Wow. You’re walking.”

She laughs.

“And then I was running.”

The move improved Deborah’s life too. Her condition causes painful spasms to roll through her body — spasms she says are getting worse and more frequent. She takes every opportunity she can to walk on her own, using walking sticks and her family’s help. But as time passed, doctors told her she would need to find another way to get around.

“If I’m in a chair, it’s safer for everybody,” she says.

Finally, last year, she got a motorized wheelchair that she says has revolutionized her life, allowing her to get outside to see her daughter’s musical performances and even participate in this year’s Memorial Day Parade.

“The fact that I can actually get out, that I can get around town and support my children … It’s been awesome.”

But it’s been expensive.

“After mom got the wheelchair, we needed to find a way to raise money,” Sarah says. “So I thought, how about we have a concert?”

So Sarah took the idea to her music teachers at BHS, Cathyann Roding and Ted Samodel. They loved it. Sarah hopes the proceeds from the concert can go toward building a proper wheelchair ramp for the family’s house. (The ramp Deborah uses now simply isn’t effective enough to allow her to get inside and outside easily.) But, she says, the concert is also a powerful tool to let others know not all pain can be easily spotted.

Hidden Pain

While the effects of Deborah’s injuries are visible, Sarah’s condition is internal – you wouldn’t know what she’s dealing with unless she told you. And that’s the most important message she hopes to pass on.

For a senior project, Sarah created a video to tell the family’s story. Set to “Not Alone” by Red, the video is a montage of photos interspersed with a message for the viewer: “Do you ever think about the pain you can’t see?”

They’ve both gone through their share of pain. But in talking to Sarah and Deborah, I was struck by how much they smiled, and even laughed, when talking candidly about the worst of it. Of course, music has played a huge role.

“Sarah has always used music to calm herself down,” Deborah says. “The music program at the high school has been fantastic for Sarah and our whole family. The concert is kind of a gift back to them, to say thank you. Music has been a way we’ve gotten through this.”

Sarah isn’t done giving back for all music has done for her. Because, back on her feet, working a job at Kohl’s and on the doorstep of high school graduation, Sarah now has a dream for the future.

“I don’t know if I’ll be able to go,” she says. “But I hope I can. I hope I can go to Nazareth College in Rochester, New York, to get my Master’s in Music Therapy.”

Music therapy. It’s the idea that music can help inspire others who find themselves facing problems like those Sarah and her mother have faced. If she achieves her dream and goes to Nazareth, Sarah will be able to help those who, like her, find themselves having to push through pain that can seem impossible, insurmountable.

“It just makes sense,” she says, “Because that’s truly what saved my life. Music saved my life.”

Click here for the original article online.

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People: Living with Pain – Physician Abandonment and Suicide in Florida

Living with Pain: Physician Abandonment and Suicide in Florida

by MARK MAGINN, COLUMNIST on JUNE 7, 2012

Last December, Joe Malone came home from work and found his wife, Michelle, dead from an intentional overdose of prescription medicine. She was only 49.

“I lost the person I loved most in the whole world. She’s never coming back. I’ll never be the same person,” Joe says of his wife’s suicide.

Like thousands of other pain patients, Michelle was a casualty of a war on drugs gone mad. The battlefield was Florida – a state that’s enacted tough laws and regulations to combat the abuse of opioid medicine. The crackdown has led to the needed closure of many pill mills, but it has so intimidated doctors and pharmacists – who fear losing their licenses — that many are denying opioid analgesics to legitimate pain patients.

Some patients, like Michelle, simply can’t live with the pain anymore.

Michelle and Joe Malone

It was twelve years ago, when the Malones were living in Middletown, Connecticut that Michelle was first diagnosed with Reflex Sympathetic Dystrophy (RSD), also known as Complex Regional Pain Syndrome. RSD affects the skin, bones and joints with searing pain.

Michelle learned that RSD was little understood and often treated with skepticism by doctors – many of whom are not adequately trained in pain medicine.

Like so many other pain patients, Michelle heard the most destructive thing a physician can say, “The pain isn’t real, it’s all in your head.”

RSD spread insidiously throughout her body, leaving Michelle in excruciating pain that led to despair, fleeting hope and recurring disappointment. She tried using opioid analgesics, such as a Fentanyl patch, but they only lessened her pain and did not stop it.

Michelle’s doctor recommended that the Malones move to a warmer climate. They followed that advice six years ago and relocated to Pensacola, Florida with all of her medical records and a referral to a pain specialist there.

Abandoned by Physicians

Michelle was referred to a well-respected pain clinic in north Florida, where a physician came up with his own medicine for pain, a formula mixed by a nearby pharmacist. This provider required all his pain patients, including Michelle, to discontinue all the drugs they were taking before they would be given this new medicine. Predictably, Michelle entered withdrawal as she came off the opioids too quickly.

As part of her treatment, Michelle was required to travel to the clinic weekly for an educational support group. It was a 45-minute drive from her home to the clinic. Michelle couldn’t drive herself and needed Joe to take her to appointments, but Joe couldn’t always get off work to do that. After a few missed meetings, Michelle was first warned and then dropped from the practice for failure to comply with the treatment plan. For Michelle, this was another in a line of physicians who abandoned her. Thoughts of suicide and a desire to stop the relentless pain increased.

“It really messed with her head, nobody wanted to help her. This is why she was depressed,” Joe recalls bitterly. “We had to rely on emergency rooms, but they treated her like shit, saying she was drug seeking, Not true. She only wanted relief.”

Like so many others inadequately treated for pain, Michelle’s condition deteriorated. She couldn’t work, do house chores or care for herself. Though often confined to bed, she developed insomnia.

“I would hold her up and we’d pace around the house for hours, it was the only way she could cope with the sleeplessness and pain,” said Joe.

Four years before her suicide, Michelle finally found a physician who understood RSD. Michelle saw her regularly and faithfully followed her medical orders and advice. Again, she relied on an opioid analgesic to lessen the pain. However much relief she gained from this treatment, it left her in lonesome anguish.

Michelle saw her physician for her regular appointment on December 16, 2011. According to Joe, she came home from the appointment to find a letter that explained to her in vague terms that her physician would no longer prescribe her medicine and would no longer treat her.

“You know what I’ll do if I can’t get my medicine,” she said that night in despair when Joe returned home from work.

Yes, Joe knew. Michelle had attempted suicide before, after other practices abandoned her.

Two days later, on December 18, Michelle took her own life.

Climate of Fear

There is a climate of fear and despair in Florida among pain patients who can’t get good medical care or have their opioid medicines filled in a timely fashion.

Yes, the public needs to be protected from opioid medicine abuse. But legitimate pain patients whose only relief comes from a combination of treatments that often entail opioid analgesics also need protection from the hysteria among the media, certain health care providers and politicians.

There are all too many reports of pain patients dying from complications of pain or from suicide. It’s not just despair that causes many pain patients to opt for dying. It is the only way many can think of to stop their agony.

What is so disturbing about what happened to Michelle and uncounted others in Florida and throughout our country is the cavalier abandonment of our most endangered patients. Michelle’s death was an entirely predictable tragedy resulting from our misguided war on drugs.

There are many resources available for people having suicidal thoughts, including a toll free hotline where counselors are available 24 hours a day. Family members or loved ones can also find tips about suicide prevention and spotting the warning signs of suicidal behavior. 

Mark Maginn

Mark Maginn lives in the east bay of San Francisco where he is a poet, writer and social justice activist. Mark suffers from chronic pain and was a longtime volunteer with the American Pain Foundation. His blog can be found here

The views, opinions and positions expressed in this column are the author’s alone. They do not inherently or expressly reflect the views, opinions and/or positions of American News Report, Microcast Media Group or any of its employees, directors, owners, contractors or affiliate organizations. American News Report makes no representations as to the accuracy, completeness, currentness, suitability, or validity of any information in this column, and is not responsible or liable for any errors, omissions, or delays (intentional or not) in this information; or any losses, injuries, and or damages arising from its display, publication, dissemination, interpretation or use.

Opposing views, opinions and positions about this column are welcomed by American News Report and or Microcast Media Group. Publication or lack of publication of opposing views, opinions and/or positions does not imply, suggest or expressly reflect an endorsement or disapproval of the originating commentary on the part of American News Report or Microcast Media Group.

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People: (Olympic runner) Reed in New York comeback

Reed in New York comeback

Beijing Olympic 10,000m runner Kate Reed returns to elite racing on Saturday at the NYRR Mini 10k and has half an eye on London 2012

Posted on June 6, 2012 by 

Four years after racing in the Olympic 10,000m final for Britain, Kate Reed will make a welcome and surprise return to top-flight competition this weekend at the NYRR Mini 10k.

The 29-year-old is almost the forgotten woman of British distance running after barely racing since the Beijing Olympics. But now, speaking from her training base in Albuquerque, she says she is in decent shape after three years of illness and injury and hopes a good run in New York’s Central Park on Saturday (June 9) will result in an invitation to the Aviva 2012 Trials and Championships in Birmingham on June 22-24.

Reed’s absence from the racing scene is mainly due to her contracting a Pseudomonas infection in her ankle after a routine bone spur operation. She then underwent five more operations and nine months of intravenous antibiotics to get rid of the bug and since recovering has been back in training for the past year.

Her most recent operation was in February 2011, when a surgeon in the Netherlands removed scar tissue that was hindering her ankle mobility. She was also diagnosed withReflex Sympathetic Dystrophy, which she still takes medication for to keep it under control.

“I have good and bad days but thankfully more good ones now,” she told AW, “and I have two fantastic doctors looking after me – Dr Kalpesh Parmar at Pure Sports Medicine and Dr Chris Seifert at the Hampshire clinic.

“I know I will most likely always have a few problems as a result of all the operations, but we address them as soon as they become troublesome and I have come to accept that I will most likely always have a certain amount of discomfort. I also think a lot of athletes compete with some degree of pain and I guess when we push our bodies so hard so often then it’s bound to rebel on occasions!”

Reed’s best time for 10,000m on the track is 31:35.77. It was set in California before the Beijing Games and is 10 seconds quicker than the A standard to qualify for London 2012.

However, should she even make the Aviva 2012 Trials and Championships, she will face a tough field that includes, at time of writing, Jo Pavey, Mara Yamauchi, Freya Murray, Sonia Samuels and Gemma Steel. Also, it must be added the 10,000m at the Trials is not an official Olympic trial event, so Reed’s challenge when it comes to Olympic qualification is the clock – and the Olympic A standard of 31:45.

For Reed, though, she is just grateful to be fit again. “I am just thankful I have been able to return to running and being able to compete again is just an even bigger bonus and I couldn’t have done it without the support of my family and friends,” she explained.

When asked if she considered retiring, she said: “Not for one second. I’ll run until the day I die, even if I never raced again.

“I could never stop running – it’s the only thing that gives me that feeling of complete peace and inner happiness. I spent many hours biking and aqua jogging when I couldn’t run and although I worked hard and exhausted myself it never gave me the satisfaction that a long hard run does.”

Reed, who is currently self-coached, began the first tentative stages of her comeback last October when she won a local 10km trail race in Albuquerque. “It was such a great feeling to be in a race situation again,” she says, “I won the event and although it was only a fun run it felt like I had finally started on my comeback.”

She then entered the Bupa London 10,000, which took place in late May, as her club, Bristol & West, was planning to enter a team. “I thought it would be a good opportunity to start back racing in the UK,” she says.

But she had to cancel her flight to London when her sister became ill and needed a heart procedure for ventricular tachycardia (or fast heart rhythm). “Thankfully after a seven-hour op her surgeon managed to fix the problem and she is recovering well here in Albuquerque,” Reed adds.

She continues: “Since my training has gone pretty well in the last month or so I felt it would be a real shame not to race so I contacted New York Road Runners to see if they could squeeze me into the NYRR Mini 10k and thankfully they did.

“Maybe if I run well in New York I might get to race at the Olympic Trials in Birmingham. But it all really depends on how my sister is.”

Given this, surely Reed’s comeback has been inspired by the thought of competing at the London Olympics. She says not.

“Did I use the Olympics as motivation? Well in all honesty, no I didn’t. I didn’t expect to be anywhere near fit in time. My main motivation has just been to get completely healthy and gradually increase my running.”

Instead, Reed has relished slowly returning to running fitness and she says she “adores Albuquerque” and that its climate helps her ankle in comparison to the damp British weather.

“I mainly train alone here,” she says. “Occasionally I have the odd run with my sister and her team-mates but all the long runs and sessions I do alone which is fine as I train alone back in the UK. I’ve been coaching myself since I started back running – it wouldn’t be fair to ask someone to help me as it’s impossible for me to make plans. I just have to see how my foot is each morning and make a sensible decision.”

Certainly, if she makes the Olympics, she will hope for a happier ending than her last Olympic appearance. She finished 23rd in a final won by Tirunesh Dibaba of Ethiopia, but after the race claimed UKA wrecked her chances of running faster by forcing her to have a drugs and fitness test the day on the eve of the race. It erupted into a big row and threw a cloud over her performance.

Whatever happens in the next few weeks, though, Reed is keen to make her marathon debut in the near future. “If everything continues to go well then I am hopeful of being able to run a marathon in the next year or two. It’s always been in my plans so I am determined to make it happen. So maybe in the future it may make sense for me to involve a coach but for now what I’m doing seems to be working.”

So while London 2012 might come too early for Reed, don’t be surprised if you see her on the roads of Rio 2016.

» The NYRR Mini 10k is a women-only race in New York’s Central Park and is celebrating its 40th anniversary on Saturday June 9. Past winners include Grete Waitz, Ingrid Kristiansen, Liz McColgan, Paula Radcliffe, Tegla Loroupe, Lornah Kiplagat and Linet Masai.

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Research: Marijuana’s Cannabinoids Aid Nervous Center

RSD/CRPS patients are constantly searching for innovative treatments and approaches to relieve the high levels of pain their bodies are in motivating modern medicine to continue to look at and research alternative approaches , says Alabama liability attorney Keith T. Belt .

Where morphine fails, marijuana may work. That’s the major finding of British research into the pain caused by nerve injuries, a pain known to be somewhat resistant to morphine and similar drugs that are the gold standard for treating just about any other kind of serious pain. The researchers say they now have evidence that active components of cannabis, which is better known as marijuana, may offer hope and have application for mitigating or eliminating pain experienced with RSD/CRPS.

“It’s known that if you injure a nerve, the morphine receptors in the spinal cord disappear and that’s probably why morphine isn’t a very effective pain killer for such conditions as shingles, people who have had an amputation or perhaps if cancer has invaded the spinal cord,” says Dr. Andrew Rice, a senior lecturer in pain research at London’s Imperial College. “But what we’ve shown is that the cannabinoid receptors do not disappear when you injure a nerve. So this could offer a therapeutic advantage over morphine for treating such pain, ” he adds.

Cannabinoids are components of cannabis or compounds that mimic cannabis, and discovering the complexities behind how and why they can offer pain relief has been the focus of various areas of research. Rice says the significance of his team’s research is that they mapped the cannabinoid receptors in the spinal cord and showed that they are found specifically in areas concerned with pain processing.

“Other researchers showed that if you inject cannabinoid compounds in small doses in the spinal cord, you get pain relief. And we showed how that effect is mediated,” he explains. “In addition, a third group of people showed that nerve cells in the spinal cord that are normally activated by pain are damped down by small doses of cannabinoid in the spinal cord fluid.” The findings were published in a recent issue of Molecular and Cellular Neuroscience.

Rice says the task now is to find out how to administer the cannabinoids, but he cautions that the most familiar — smoking it — is the last thing researchers would advise. “Smoking is obviously a big health hazard and we’re certainly not going to advocate that people smoke cannabis. So right now we’re looking at ways of delivering the drug to the body,” he says.”One problem with cannabinoids is that they are very fat-soluble, so that makes them very difficult to formulate the drugs into pills or injections. So one way that’s being looked at by some pharmaceutical companies is using the kind of inhaler that asthma sufferers use. It’s going to be a tough cookie to crack, however,” he adds.

Cannabinoid compounds are among a variety of drugs that have been intensely looked at as researchers look for alternatives to the remarkably few pain relief options. “Researchers have spent the last 30 years trying to understand the mechanism of pain, particularly in the skin and spinal cord, and the massively complex array of chemicals that are involved in that process,” Rice explains. “While people have generally tried to target each of those chemicals to develop pain killers, very few approaches have been successful, and we’re still essentially left with the three very old, basic concepts in drugs: morphine, which has been with us for thousands of years, aspirin or acetaminophen,” he adds.

Dr. Kenneth Mackie, an associate professor in anesthesiology and physiology at the University of Washington in Seattle, says there is indeed great concern in the medical community about the need to find better pain relief for damaged nerves, but that progress is being made. “It’s obviously a big problem for the people who have that kind of pain and on the basic science side, it’s an area of intense investigation. Cannabinoids are just one option that people are looking at. Our understanding of the wiring of the spinal cord is evolving very quickly, however, and we should soon be able to choose drugs to work more effectively,” he adds

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People: Rare Disease Puts 10-Year-Old Girl In Wheelchair (Ashlin Tweedy)

Rare disease puts 10-year-old girl in wheelchair

Posted: Jun 18, 2012 11:35 PM EDTUpdated: Jun 19, 2012 11:21 AM EDT

Arnold Wyrick

JONESBORO, IL (KFVS) – The Tweedy family’s life was turned upside down three months ago. That’s when their 10-year-old daughter was diagnosed with Complex Regional Pain Syndrome.

The disease an uncommon form of chronic pain that usually affects an arm or leg.

In Ashlin’s case it’s affected both of her legs and feet. She can no longer walk and must rely on a wheelchair to get around.

“I used to hang out with my friends and go places. But now I can’t do that,” said Ashlin.

The disease is also causing Ashlin to suffer extreme hot and cold flashes throughout her body.

It’s really changed the families day to lives in ways they never could imagine.

“She has a very bad case of it, she’s been hit really hard,” said Rhonda Tweedy. “It’s very scary to know that your child is okay and then in less then a month they can’t walk. That’s a lot of shock to absorb.”

It’s a lot for her dad Rodney to get adjusted to in how he spends time with Ashlin.

“When you get used to coming home and playing with your kids everyday, or like going to watch her play soccer,” said Rodney Tweedy. “Now when I come home usually the first thing I do is I have to pick her up and take her to the bathroom, because she can’t go to the bathroom or anything. She can’t put on her clothes, her mom has to help her. So it’s changed our lives completely.”

Even in her constant pain Ashlin can still find ways to smile and try to forget about her situation. She never knows when the next surge of pain is going to hit her.

“I don’t know when it’s going to happen, how long or what’s going to happen it just happens,” said Ashlin. ” I try not to scream and wake up my mom at night because I’m in a lot of pain. I don’t want to wake her up and disturb her sleeping. I just want her to get her sleep.”

Now it’s going to be one day at a time for the family and for Ashlin.

“It’s not easy by no means. Rhonda takes care of Ashlin and I take care of the bills and keep the other kids going. And the bills just keep mounting up.We’re just about to lose everything trying to get Ashlin to where she needs to be to the help she needs,” Rodney said. “I have a wonderful wife and we’re just a family pulling together here trying to just survive. And get Ashlin back on her feet.”

Which the family will begin working on next week at the Mayo Clinic in Boston, Massachusetts.

The Saint Louis Children’s Hospital was able to diagnose Ashlin with Complex Regional Pain Syndrome, but the hospital was unable to provide her with any treatments.

The cause of Complex Regional Pain Syndrome isn’t clearly understood. And fewer then 2000 kids a year in America are diagnosed with the disease.

Copyright 2012 KFVS. All rights reserved.

 

 

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