Friday, February 23, 2007

New Arrival !


Jake_Alexander_Bingham, originally uploaded by rsdscrpsnews.

I normally don't make personal comments or posts to this blog... always want it to be more about you, the reader, than me, you humble collector of news...

But this week I've been neglectful of the blog.... been a bit busy with the arrival of our first child, Jake Alexander Bingham !

Jake came into the world at 9lbs 5oz and measuring 22.5 inches. Mother and baby are doing great!

I'll be back to updating the blog next week!

All my best to all of you...

Jason

Tuesday, February 13, 2007

Dear Doctors of Vanderbilt

Dear Doctors of Vanderbilt

February 11th, 2007

Over the years I’ve seen many of you pediatric and internal medicine physicians at Vanderbilt Univeristy Medical Center. You may be employed at a hospital renowned for being the best and largest hospital and employer in Middle Tennessee but you, the doctors, are way behind the times. You are not like the doctors of Seattle Grace, you are not like McDreamy (or McSteamy), you’re not Luka from ER, you’re not Jack from Lost, you’re not even House.

You probably wouldn’t remember me and I know you wouldn’t remember my name, much less how to spell it (even if you’re my PCP). I’ve seen so many of you over the years that I might not remember your name either–so I guess we’re even on that front. You may think you’re groundbreaking researchers and physicians in many areas, and you may well be, but let me tell you this: YOU FUCKING SUCK with bedside manner and chronic pain patients.

Doctors can get a little cocky, I know because my father is one of them, and they can assume they know your case and your problems and your story before they take the time to listen (if you’re lucky enough to snag one that actually listens). Reporting that you’re in pain and need medication to ease it means you are a junkie, you are faking it, and you are just groveling for some meds to get your next fix. And dear god, if you’re underage and you need pain killers well then you’re doing the dirty work for your junkie parents or you’re just exaggerating, after all children can’t have chronic pain disorders, right? You guys are so behind the times that you don’t even have A PAIN MANAGEMENT CLINIC, which nearly every hospital does nowadays. Hell, even small practices are taking on pain management with fervor, but not a rich, educated hospital like Vanderbilt.

In the area of Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome you really are clueless, once more. You think what the Children’s Hospital of Philadelphia says about their study with RSD and exercising for eight hours a day is the Word Of God, and that’s all you can try out. Don’t do your own studies or give your patients any options, go ahead, leave them feeling like they’re doomed, after all, they are junkies.

You think I’m exaggerating by now, I can tell. The last paragraph was just for one doctor, Dr. Lawton (a pediatric rheumatologist), who told me about an exercise program for minors with RSD (drop out of school and exercise constantly, see if it rewires your brain, don’t give them any relief for the massive amounts of pain they’re enduring just for your study). He also suggested my RSD (which he diagnosed) was just “emotional”. Bullshit.

I haven’t even moved on to those assholes at the very new Vanderbilt Children’s Hospital Emergency Room. That’s a totally different entry.

But I just want to say one thing to the brilliant young doctor (Dr. Kristine Ehst, Internal Medicine) who suggested my pain that causes me to writhe and scream and moan and yell and sob in pain was just ‘growing pains’, and prescribed some ‘Bengay’ for it (and nothing else), and who told me one afternoon when I was leaving her office to “go out and have some fun this weekend”.

Well damn, Dr. Ehst. I was planning on sitting at home watching Passion of the Christ, hitting my legs and arms with hammers so I could be in that chronic pain I keep telling you about, reciting the Illiad, and maybe even giving myself an enema, but since you told me to “go out and have some fun this weekend” I guess I’ll have to change my plans.


Original Site Link.


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Research Supports Medicinal Marijuana


Research Supports Medicinal Marijuana

AIDS Patients in Controlled Study Had Significant Pain Relief

Washington Post Staff Writer
Tuesday, February 13, 2007; Page A14

AIDS patients suffering from debilitating nerve pain got as much or more relief by smoking marijuana as they would typically get from prescription drugs -- and with fewer side effects -- according to a study conducted under rigorously controlled conditions with government-grown pot.

In a five-day study performed in a specially ventilated hospital ward where patients smoked three marijuana cigarettes a day, more than half the participants tallied significant reductions in pain.

By contrast, less than one-quarter of those who smoked "placebo" pot, which had its primary psychoactive ingredients removed, reported benefits, as measured by subjective pain reports and standardized neurological tests.

The White House belittled the study as "a smoke screen," short on proof of efficacy and flawed because it did not consider the health impacts of inhaling smoke.

But other doctors and advocates of marijuana policy reform said the findings, in today's issue of the journal Neurology, offer powerful evidence that the Drug Enforcement Administration's classification of cannabis as having "no currently accepted medical use" is outdated.

"This should be a wake-up call for Congress to hold hearings to investigate the therapeutic use of cannabis and to encourage more research," said Barbara T. Roberts, a former interim associate deputy director in the White House Office of National Drug Control Policy, now with Americans for Safe Access, which promotes access to marijuana for therapies and research.

Countless anecdotal reports have suggested that smoking marijuana can help relieve the pain, nausea and muscular spasticity that often accompany cancer, AIDS, multiple sclerosis and other ailments. But few well-controlled studies have been conducted.

The new study enrolled 50 AIDS patients with severe foot pain caused by their disease or by the medicines they take.

The team first measured baseline pain, both subjectively (patients ranked their pain on a scale of 1 to 100) and with two standardized tests, one involving a small hot iron held to the skin and another involving hot chili pepper cream.

Then, for five days, patients lit up at 8 a.m., 2 p.m. and 8 p.m. using a calibrated puff method that calls for inhaling for five seconds, holding one's breath for 10, then waiting 45 seconds before the next.

The cigarettes were kept frozen and locked in a safe, then thawed and humidified one day before use. Cigarette butts and other debris were collected, weighed and returned to the safe to ensure no diversion for recreational purposes.

Grown on the government's official pot farm in Mississippi, the drug was about one-quarter the potency of quality street marijuana. The inactive version was chemically cleansed of cannabinoids, the drug's main active ingredients.

"It smelled like and looked like" normal marijuana, said study leader Donald I. Abrams, a physician at San Francisco General Hospital, where the smoking ward was located. Like the patients, Abrams was not told who had the active pot until the study was over.

Thirteen of 25 patients who smoked the regular marijuana achieved pain reduction of at least 30 percent, compared with six of 25 who smoked placebo pot. The average pain reduction for the real cannabis was 34 percent, compared with17 percent for the placebo.

Opioids and other pills can reduce nerve pain by 20 to 30 percent but can cause drowsiness and confusion, Abrams said. And many patients complain that a prescription version of pot's main ingredient in pill form does not work for them.

That was true for Diana Dodson, 50, who received an AIDS diagnosis in 1997 after a blood transfusion.

"I have so many layers of pain I can hardly walk," said Dodson, who was in the new study. Prescription drugs made her feel worse. "But inhaled cannabis works," she said.

Patients in the study -- all of whom had smoked pot previously -- reported no notable side effects, though the researchers acknowledged that people unfamiliar with the drug may not fare as well.

Igor Grant, director of the University of California Center for Medicinal Cannabis Research, which funded the research, said the study was probably the best-designed U.S. test of marijuana's medical potential in decades. He called the results "highly believable."

But David Murray, chief scientist at the White House Office of National Drug Control Policy, called the findings "not particularly persuasive." The study was relatively small, he said, and it is likely that those who received the real pot were aware of that, introducing a bias of expected efficacy.

"We're very much supportive of any effort to ameliorate the suffering of AIDS patients," Murray said. But even if ingredients in marijuana prove useful, he added, they ought to be synthesized in a pill to make dosing more accurate and to minimize lung damage.

Separately, ending a six-year effort, a Massachusetts group learned yesterday that it had won a legal victory against the DEA in its battle for federal permission to grow its own cannabis for federally approved studies, instead of relying on government pot.

In an 87-page opinion, administrative law judge Mary Ellen Bittner ruled that it "would be in the public interest" to allow a University of Massachusetts researcher to cultivate marijuana under contract to the Multidisciplinary Association for Psychedelic Studies (MAPS), which sponsors medical research on marijuana and other drugs.

The DEA is not obligated to follow the advice of its law judges, but the detailed decision should make it difficult for the agency to balk, said MAPS President Rick Doblin.



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Monday, February 12, 2007

Pharmaceutical Company buys 2,500 drug-free Mirror Therapy Boxes for UK pain clinics




Pharmaceutical Company buys 2,500 drug-free Mirror Therapy Boxes for UK pain clinics

Reflex Pain Management Ltd
2/12/2007 10:13:56 AM

Manchester, UK – 12, February 2007

NAPP Pharmaceuticals, pioneers of prolonged released drugs for the relief of severe pain have purchased 2,500 Mirror Therapy Boxes for complimentary distribution to pain clinics throughout the UK.

Mirror Therapy Boxes are used in Mirror Visualisation Therapy for the treatment of hand pain, foot pain, phantom limb pain, Reflex Sympathetic Dystrophy (RSD) and Complex Regional Pain Syndrome (CRPS). With RSD, CRPS, phantom limb and other Neuropathic pain conditions a visual feedback helps the patient to "move" the affected or amputated limb in the mind and release it from painful positions, satisfying the brain that the limb is actually normal.

Mirror Visualisation Therapy also benefits the rehabilitation of hand, wrist and foot pain following injury, surgery or stroke, improving the motor functions of the affected limb and helping speed up recovery time.

Dr. Ilan Lieberman FRCA, a consultant in pain management and anaesthesia at the University Hospital of South Manchester reports that several of his patients who were unable to move a hand or foot prior to using the Mirror Therapy Box, were able to move their injured limbs after a Mirror Therapy Box session.

The Mirror Therapy Boxes supplied to NAPP are light weight with a robust plastic mirror allowing users to undertake visualisation exercises in the comfort of their home, at the office or in bed.

For further information on Mirror Visualisation Therapy for hand, wrist and foot pain management, RSD, CRPS, stroke injury and limb rehabilitation please visit www.mirrorboxtherapy.com

Mirror Therapy Boxes can be purchased for £19.99 (approximately $38.00 USD - €30.00) from www.reflexpainmanagement.com and worldwide shipping is currently free of charge.




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Increased endothelin-1 and diminished nitric oxide levels...

BMC Musculoskelet Disord. 2006; 7: 91.
Published online 2006 November 30. doi: 10.1186/1471-2474-7-91.

Received October 14, 2006; Accepted November 30, 2006.


Increased endothelin-1 and diminished nitric oxide levels in blister fluids of patients with intermediate cold type complex regional pain syndrome type 1

Sunday, February 11, 2007

A gift from God


A gift from God
Thadeus Greenson/The Times-Standard
Article Launched: 02/11/2007 04:28:40 AM PST

WILLOW CREEK -- One can hear Paula Mattocks' pain in the pops, cracks and snaps that emanate from her shoulder. It can also be heard in the Hoopa-based artist's voice, which she tends to lose when the pain is at its worst.

It's a pain that can also be seen in the braces that secure her right arm and wrist, almost concealing an eight-inch scar that nearly runs the length of her forearm. It's also in her teeth, which are starting to crack from the constant clenching of her jaw.

It's also in her paintings. It's embedded in the landscapes, which burst with colors and textures. It's not a pain that manifests itself in dark and dreary abstracts or images of widespread suffering; rather, the pain is the painting. Without it there would be no image, no paint and no artist.

Mattocks' art career took root as her nursing job in a Nevada assisted living center came to an end. It was 6:45 p.m. July 2, 2000 -- a date and time that Mattocks said she will never forget.

”My life was changed that day, but I didn't know the extent of it for two years,” she said.

Moments after starting her shift in the center's high-risk unit, Mattocks was assisting other nurses with cleaning and changing a combative

patient who had soiled himself when something went terribly wrong. The man resisted, grabbing Mattocks' right hand and bending it back until the back of her hand was flush with her wrist, ripping all the wrist's tendons and causing substantial nerve damage in the process.

Three surgeries, countless hours of physical therapy and years later, the pain remained, but in a more debilitating form. Mattocks was diagnosed with Reflex Sympathetic Dystrophy Syndrome (RSDS), a chronic pain syndrome that affects more than 200,000 people in the United States, according to the RSDS Association.

The pain was constant and kept her from sleeping, working or even holding her children. The only escape came in the form of cortisone, injected with an eight-inch needle into her neck, next to her trachea. And even that, which Mattocks referred to as her oil change, only happened twice a year and relieved the pain for just a couple days.

”For those two days, it's absolute heaven,” Mattocks said. “There's no pain.”

Today, Mattocks anticipates a reconstructive shoulder surgery in her future, and until then, more pain.

But, even out of the pain, something in Mattocks blossomed.

After moving back to Hoopa in 2004 with her husband, Drew, to be closer to her great aunt, Ruby Jarnaghan, and her parents, Gemma and Bob Carmony, Mattocks' mother-in-law gave her a set of paints and a how-to book by painter Bob Ross of PBS fame.

She didn't think much of the paints at the time, but one pain-filled night a couple of months ago, she picked up the book, grabbed her paints and the one brush she owned, and stood in her pantry, painting lefthanded, for 13 hours until she had finished her first piece.

”I did it all in one night because the pain is so outrageous that I just painted until it was done,” Mattocks said.

That was Nov. 3. Two weeks later, she had completed a dozen landscapes with color contrasts, shadow work and textures uncanny for a novice.

”People say oils are hard, but I can't see how they are,” Mattocks said last week. “I don't even know how I blend the paints to be honest with you. ... This was literally a gift from God, and I'm not a religious person.”

She left the paintings stacked around her home until they were noticed by a friend, who insisted that Mattocks look into showing them. Mattocks then took a digital camera, loaded with pictures of her work, over to The Lost Arrow Trading Company in nearby Willow Creek, which was quickly making a name for itself by showing the work of local artists.

”When she came in,” said Dana Davis, who along with his wife, Connie, owns the Lost Arrow Trading Company, “she was so nervous she could hardly stand still, and when I said, 'Your paintings are great. We'd love to show them,' you could just see the tears welling up in her eyes.”

”I just started crying,” Mattocks recalled. “It was a moment we didn't have control over.”

Since then, the pain has remained, but something else has emerged.

”From that day on, she's like a totally different person. She has hope now,” said Connie Davis.

Inspired by how well her paintings were received, Mattocks then decided to follow through on one of her other ideas. Having long noticed that fry bread and Indian tacos were hugely popular at local fairs and festivals, she decided that a fry bread mix could have big sales opportunities.

She formed a mix that, combined with only water, would allow the average person to make fry bread in their homes. She jarred it, labeled it and took it down to The Lost Arrow Trading Company, where, known as Rez Fry Bread, it has been flying off the shelves ever since.

”As soon as we put it in the store it started selling,” said Connie Davis.

While the fry bread is the business opportunity that Mattocks hopes will eventually provide a better life for her three children and even provide the funds to sponsor a Hoopa Head Start program, it's the painting that has captivated her.

”All I know is I want to go see art everywhere now,” she said. “I never looked at it before. I would notice the paint and the colors, but now I want to see the grains and textures. ... It's almost like a drug addict's fix, I need to paint.”

Still, Mattocks said she hasn't picked up a paintbrush in weeks because she ran out of oil paints and has had trouble lifting her left arm. But, she insists she's ready for whatever is in store for her.

”Fate -- it's the driver of the car, we're just passengers,” she said.

Mattocks then talked about being a good role model for her children, and both instilling in them a sense that they can do whatever they want and giving them the motivation to do it.

”Now, my kids know they can do anything,” Mattocks said, “one handed or two.”

Mattocks' currently has one painting on display at Arcata Bay Arts, 791 Eighth St. in Arcata, and an assortment on display at the Lost Arrow Trading Company, 39047-A Highway 299 in Willow Creek. For more information on Rez Fry Bread mix, call 407-9645 or write to P.O. Box 567,Hoopa, CA 95546-0567.




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Thursday, February 08, 2007

Dog pulls owner inside and out of cold


02/08/2007
Dog pulls owner inside and out of cold

TOLEDO, Ohio A Toledo woman says she would have fallen victim to the cold weather were it not for her dog.

Sam Good suffers from Reflex Sympathetic Dystrophy, a neurological syndrome that sparks immobilizing seizures through her body. Good says she suffered an attack last week while going outside to turn off her back porch light.Temperatures were in the teens, and Good feared she might freeze. She called out to her 104-pound golden retriever Maddie.Maddie came to the porch and Good was barely able to wrap her arms around the dog's neck. Maddie then dragged her owner back into the warmth and safety of her house, all the way to her bedroom.Good's seizure eventually subsided, but she says she could have frozen to death if not for her dog's help.




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Monday, February 05, 2007

‘Good doctor' helps woman deal with disease




‘Good doctor' helps woman deal with disease
By Nick Schneider, ASSIGNMENTS EDITOR

Elizabeth Ochoa, who serves as executive director of the Greene County Alcohol and Drug Services office in Bloomfield, counts herself lucky that she's been blessed with what she called a “good doctor” who recognized a severe medical problem that afflicts her and knew what to do about it.

She's been diagnosed with Reflex Sympathetic Dystrophy, also known as Complex Regional Pain Syndrome - RSD or CRPD for short. It is a progressive disease of the autonomic nervous system with its key component being damage to a nerve, either major or minor.

RSD/CRPS Type I can follow a simple trauma (fall or sprain), break or fracture (especially wrist and ankle), a sharp force injury (such as a knife or bullet wound), heart problems, infections, surgery, spinal injuries/disorders, RSI's (Repetitive Stress Injuries), CTS (Carpal Tunnel Syndrome), Tarsal Tunnel Syndrome, injections, and even some partial paralysis injury cases.

Until late 2005 there was no way to test for or confirm Type I, commonly called RSD, and often times patients were doubted because of that.

“If I hadn't had a good doctor to tell me what was wrong with me I could have lost the use of my foot and then my whole leg,” Ochoa recently revealed.

Ochoa said she was first diagnosed about three years ago after she had a serious ankle surgery.

“I was getting better and I was on crutches for several months and then all of a sudden I quit getting better and I started having this extreme burning like someone was pouring acid on my ankle. I mean it was really intense and it hurt awful,” she recalled.

She consulted with Dr. Kevin Powers, a Bloomington podiatrist, and after he ran several tests, it was determined that she suffered from RSD.

“I said, ‘Can't you just give me a pill and fix it and maybe it will go away'. He said, ‘No this is serious. You could lose the use of your limb. You have to go see a specialist,” Ochoa recalled.

Dr. Powers wanted to be certain it as RSD and Ochoa was referred to Dr. Raj Tewari, MD, who practices at Methodist Hospital in Indianapolis, and the diagnosis was soon confirmed.

“Basically what it (RSD) does is your central nervous system sends messages to your brain that the area that was injured or operated on is still injured or hurt. It breaks down everything. You have this severe nerve pain, burning and all of those things. It's really bad,” Ochoa explained.

According to the American RSD Hope Web site, RSD/CPRS Type II involves definable major nerve injury. It was once known as Causalgia.

As many as 65 percent of RSD cases come from soft tissue injuries such as burns, sprains, strains, tears, bursitis, arthritis and tendonitis.

RSD is a mult-symptom condition affecting one, two or sometimes all four extremities. It can also be in the face, shoulders, back, eyes and other areas as well. It is an involvement of the nerves, skin, muscles, blood vessels - causing constriction and pain - as well as bones.

Anyone can contract it - but is more prevalent in women than men and can affect all age groups.

Medical experts says there is no denying the extreme pain associated with RSD.

On the McGill Pain Index - a medically recognized method to measure pain, RSD rates 42 on a 50 point scale.

“It (the pain) can be just so extreme that cutting off the limb (by amputation) doesn't do any good at all because the central nervous system still sends those messages to your brain whether it (the limb) is there or not and you will still have the pain,” she said.

Soon after confirmation of her diagnosis, Ochoa was started on a series of injections in her lower back - into the spine - twice a week and got RSD into remission.

Ochoa, who has been in remission for about 18 months, was fortunate, because if RSD progresses to a certain stage you can't be helped. She is also thankful that her case was benefited by an early diagnosis which put her quickly in touch with someone who could address the illness.

“Doctors don't have a lot of knowledge about it (RSD). It doesn't reflect that they are a bad doctor, but there is just an urgency about it (the disease). If I had not gone to someone who could have diagnosed it, I would really be in big trouble right now. I come out of remission every once in a while and have to have shots in my back,” she pointed out.

Since first going in remission, she has relapsed twice - once after gall bladder surgery and again after a kidney infection.

“Any time there is any kind of trauma to another other part of your body it can get you out of remission,” Ochoa said. “But I had to start that series of shots again which have always been effective for me.”

Recently, she had another scare following elbow surgery last fall.

About four months after that surgery, she again experienced the familiar burning and intense pain and knew she was again out of remission.

She immediately consulted Dr. Tewari and he advised her that she would again have to undergo a regimen of shots to avoid further complications.

This round of injections had to be carefully done with a six-inch long needle inserted through the front part of her neck into her spine. The injections affect her vocal cords - preventing her from talking for about eight hours afterwards. She also has experienced nausea with this new injection location.

“It's terrible, but I wake up in a few days and I'm better every time,” she added with a big smile.

Ochoa said she's resigned to the fact that she'll have to live with RSD for the rest of her life and the chance of coming out remission is always looming.

She feels it's important for her to get her story out to the public in order to possibly help someone else who might be battling similar symptoms and unaware of what it is or what to do.

“If they know, then they can see about doing something about this before they are crippled for the rest of their life from it. They can get treatment and it will be effective treatment before it's too late for them,” Ochoa said. “Once it gets to a certain point (untreated) there is no return.”

She continued, “I don't want anyone to wind up crippled from it needlessly because no one knew the proper diagnosis, and no one knew the importance and urgency of being treated immediately. Because once you get past that point nothing is going to be effective.”

Ochoa, a Bedford native, has worked in the Greene County alcohol and drug office since last August. She came back to Indiana after working law enforcement-related jobs Corpus Christi, Texas, and Indianapolis. She most recently served in Washington, where she was a probation officer in Daviess County. She holds an elementary education degree from Indiana University.

Ochoa heads a program that has clients assigned by the two local courts as a part of sentencing orders handed down by Superior Court Judge J. David Holt and Circuit Court Judge Erik Allen on a variety of misdemeanor and felony charges involving drug and alcohol use and abuse.

She lives in Bedford and is the single mother of a 22-year-old daughter, Ashley and a 17-year-old son, Drew.

“People need to be educated about RSD because knowledge is power and it can save you from a lifetime of grief if you get in fast enough, get treated and get help for it,” she concluded.

For more information about RSD consult the American RSD Hope Web site at http://www.rsdhope.org.




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