PLEASE GIVE TO RSDSA – donor will match donations up to $5,000!


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Neuropathic Pain is

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highly difficult to treat 

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and few medications are available

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Please donate to RSDSA to support research for neuropathic pain & help those disabled by pain.

 

 

From RSDSA:

 

It’s almost go time!

 

We are only days away from #GivingTuesday 2019! This year, we have a donor who will match our donations up to $5,000! It’s true that it takes a village like our community to work together and raise awareness, educate, and advocate for better treatments.

 

If you haven’t done so already, please make a donation to our #GivingTuesday fundraising page and tell your friends and family about our campaign. Spreading the word gets our voices heard and the donations rolling in! We’re excited to be a part of this worldwide event and providing a chance to give back to our community.

 

Please join our campaign between now

 and Tuesday, December 3, 2019

 

RSDSA’s 2019 Accomplishments

 

  • Co-sponsorship of Courageous Kids Camp for children with CRPS in Kentucky for the 4th year

  • Sponsorship of Young Adults Weekends for young adults with CRPS who are transitioning into the workforce, independent living, and other new situations

  • Sponsorship of an accredited free online course on pediatric CRPS

  • Sponsorship of two Treating the Whole Person conferences; in Houston and Denver

  • And much more!

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Cheers,

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Your Team at RSDSA

 

 

 

 

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We are highlighting a different Warrior’s story on our blog each day!

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Catch up on the posts today!

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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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Comments are welcome.

This site is not for email, not for medical questions, and not for appointments.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please IGNORE THE ADS BELOW. They are not from me.

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Low Dose Naltrexone for Pain


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From NPR: 

In Tiny Doses, An Addiction Medication Moonlights As A Treatment For Chronic Pain

 

Alex Smith

 

Lori Pinkley, a 50-year-old from Kansas City, Mo., has struggled with puzzling chronic pain since she was 15.

 

She’s had endless disappointing visits with doctors. Some said they couldn’t help her. Others diagnosed her with everything from fibromyalgia to lipedema to the rare Ehlers-Danlos syndrome.

 

Pinkley has taken opioids a few times after surgeries but says they never helped her underlying pain.

 

“I hate opioids with a passion,” Pinkley says. “An absolute passion.”

 

Recently, she joined a growing group of patients using an outside-the-box remedy: naltrexone. It is usually used to treat addiction, in a pill form for alcohol and as a pill or a monthly shot for opioids.

 

As the medical establishment tries to do a huge U-turn after two disastrous decades of pushing long-term opioid use for chronic pain, scientists have been struggling to develop safe, effective alternatives.

 

When naltrexone is used to treat addiction in pill form, it’s prescribed at 50 mg, but chronic-pain patients say it helps their pain at doses of less than a tenth of that.

 

Low-dose naltrexone has lurked for years on the fringes of medicine, but its zealous advocates worry that it may be stuck there. Naltrexone, which can be produced generically, is not even manufactured at the low doses that seem to be best for pain patients.

 

Instead, patients go to compounding pharmacies or resort to DIY methods — YouTube videos and online support groups show people how to turn 50 mg pills into a low liquid dose.

 

Some doctors prescribe it off-label even though it’s not FDA-approved for pain.

 

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For discussion of mechanism and case reports of the remarkable efficacy of this anti-inflammatory medication, use search function top left above small photo. Thankfully his insurer is covering the cost of the compounded capsules.

 
 
 
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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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For My Home Page, click here:  

Welcome to my Weblog on Pain Management!

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Please DONATE to RSDSA to Help Patients & Research on Neuropathic Pain






Neuropathic Pain is highly difficult to treat and few medications are available.

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Please donate to RSDSA to support research for neuropathic pain & help those disabled by pain.

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WE CAN NOT DO IT ALONE 

During this holiday season of thankfulness and giving, RSDSA appreciates your commitment to making an impact on the lives of those who struggle with Complex Regional Pain Syndrome (CRPS). Your financial support and kindness have enabled RSDSA to help many individuals with CRPS. This excruciatingly painful and debilitating disorder does not discriminate; it affects the lives of children, teenagers and adults 24 hours a day, 7 days a week. Sadly, each year, 50,000 new cases of CRPS are diagnosed.  We at RSDSA must be prepared to meet their needs. 

BUT WE CAN NOT DO IT ALONE

For more than 34 years, our commitment to provide support, education and hope to all affected by the pain and disability of CRPS remains strong.  We are still determined to drive research to develop better treatments and hopefully a cure.    

Because of your Generosity, in 2018 we:

Co-sponsored 250 children with CRPS (and other pain syndromes) and their families at The Center for Courageous Kids Camp.  The experience allowed the campers to feel like kids again for the first time since the onset of their illness. This is our 4th year.  Wheelchairs welcome!Sponsored Young Adult retreats in Austin, TX and Nashville, TN for 25 young adults (aged 18-25). Many had never met anyone who had CRPS.  

Friendships, ongoing networking and a young adult committee have since developed,Sponsored conferences in San Jose, CA and Charlotte, NC attended by 400 individuals with CRPS, caregivers, and medical professionals; 14 new educational videos were added to our YouTube channel.  

362 individuals with CRPS received emergency funding to pay for heat and other utilities, rent, durable medical equipment, travel expenses to obtain medical care and more, Created a new Advocacy Committee which will explore and promote the interests of the CRPS community. It will create awareness, encourage increased clinical and research funding, and promote changes in the CDC Guidelines, Answered more than 5000 emails and phone calls which poured into our office.

Our compassionate staff answered questions, provided information packets and a list of knowledgeable health professionals who understand and treat CRPS, Mailed 17,725 newsletters to individuals with CRPS, health professionals and caregivers three times a year. The newsletters, filled with the latest updates and inspiring personal stories, were also sent electronically 3 times a year to our online community.

Please make a donation Now! 

Thank you for your kind consideration. 


RSDSA Staff – Sincerely yours,


James Broatch, Tracy Geer, Pamela Kientzler, Jennifer Pincus, 
Endra Newell, Alyce LoweJim, Tracy, Pam, Jennifer, Endra, Alyce







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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

~~

Comments are welcome.

This site is not for email, not for medical questions, and not for appointments.

~~~~~

For My Home Page, click here:  Welcome to my Weblog on Pain Management!

.

Please IGNORE THE ADS BELOW. They are not from me.

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Spinal Cord Stimulators Can Cause Deaths & Injuries


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Washington Post Reports .

Injuries & Deaths from.

Spinal Cord Stimulators

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Excerpts below are from the November 25 report linked above on spinal cord stimulators. Use search function top left for prior several posts on this site:

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…one of the fastest-growing products in the $400 billion medical device industry. Companies and doctors aggressively push them as a safe antidote to the deadly opioid crisis in the U.S. and as a treatment for an aging population in need of chronic pain relief.

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But the stimulators — devices that use electrical currents to block pain signals before they reach the brain — are more dangerous than many patients know, an Associated Press investigation found. They account for the third-highest number of medical device injury reports to the U.S. Food and Drug Administration, with more than 80,000 incidents flagged since 2008.

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Patients report that they have been shocked or burned or have suffered spinal-cord nerve damage ranging from muscle weakness to paraplegia, FDA data shows. Among the 4,000 types of devices tracked by the FDA, only metal hip replacements and insulin pumps have logged more injury reports.

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The FDA data contains more than 500 reports of people with spinal-cord stimulators who died, but details are scant, making it difficult to determine if the deaths were related to the stimulator or implant surgery.

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Medical device manufacturers insist spinal-cord stimulators are safe — some 60,000 are implanted annually — and doctors who specialize in these surgeries say they have helped reduce pain for many of their patients.

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Most of these devices have been approved by the FDA with little clinical testing, however, and the agency’s data shows that spinal-cord stimulators have a disproportionately higher number of injuries compared to hip implants, which are far more plentiful.

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The AP reported on spinal stimulators as part of a nearly yearlong joint investigation of the global medical devices industry that included NBC, the International Consortium of Investigative Journalists and more than 50 other media partners around the world. Reporters collected and analyzed millions of medical records, recall notices and other product safety warnings, in addition to interviewing doctors, patients, researchers and company whistleblowers.

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The media partners found that, across all types of medical devices, more than 1.7 million injuries and nearly 83,000 deaths were reported to the FDA over the last decade.

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The investigation also found that the FDA — considered by other countries to be the gold standard in medical device oversight — puts people at risk by pushing devices through an abbreviated approval process, then responds slowly when it comes to forcing companies to correct sometimes life-threatening products.

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Devices are rarely pulled from the market, even when major problems emerge. And the FDA does not disclose how many devices are implanted in the U.S. each year — critical information that could be used to calculate success and failure rates….

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…The four biggest makers of spinal-cord stimulators are Boston Scientific Corp., based in Marlborough, Massachusetts; Medtronic, with headquarters in Ireland and the U.S.; Nevro, in Redwood City, California; and Illinois-based Abbott, which entered the market after its $23.6 billion purchase of St Jude Medical Inc.

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St. Jude’s application to go to market with its first spinal stimulator contained no original patient data and was based on clinical results from other studies, while Boston Scientific’s application for its Precision spinal-cord stimulator was based largely on older data, though it did include a small, original study of 26 patients who were tracked for as little as two weeks.

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Once approved, medical device companies can use countless supplementary requests to alter their products, even when the changes are substantial.

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For example, there have been only six new spinal-cord stimulator devices approved since 1984, with 835 supplemental changes to those devices given the go-ahead through the middle of this year, the AP found. Medtronic alone has been granted 394 supplemental changes to its stimulator since 1984, covering everything from altering the sterilization process to updating the design.

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“It’s kind of the story of FDA’s regulation of devices, where they’re just putting stuff on the market,” said Diana Zuckerman, president of the National Center for Health Research, who has studied medical devices for nearly 30 years.

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….“These patients are guinea pigs,” she said.

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….Dr. Walter J. Koroshetz, director at the neurological disorders and stroke division at the National Institutes of Health, said trials for medical devices like spinal-cord stimulators are generally small and industry-sponsored, with a “substantial” placebo effect.

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“I don’t know of anyone who is happy with spinal-cord technology as it stands,” Koroshetz said. “I think everybody thinks it can be better.”

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….[Jim] Taft’s stimulator failed soon after it was surgically implanted. After an operation to repair it, he said, the device shocked him so many times that he couldn’t sleep and even fell down a flight of stairs. Today, the 45-year-old Taft is virtually paralyzed, a prisoner in his own bed, barely able to get to the bathroom by himself…..

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Taft said his three-day trial helped reduce his pain so, a few days before his surgery, he began preparing for a new life. He ordered lumber to refurbish a patio and deck for his wife, Renee, as thanks for her years of support.

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In April 2014, Boston Scientific’s Precision stimulator was implanted in Taft by Jason Highsmith, a Charleston, South Carolina, neurosurgeon who has received $181,000 from the company over the past five years in the form of consulting fees and payments for travel and entertainment. A Boston Scientific sales representative was in the operating room — a common practice, the AP found.

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Highsmith would not comment on the payments. Other doctors have defended the practice, saying they do important work that helps the companies — and ultimately patients — and deserve to be compensated for their time.

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From the time Taft was cut open and the device placed inside his body, he had nothing but problems, according to hundreds of pages of medical records reviewed by the AP. The device began randomly shocking him, and the battery burned his skin.

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Taft and his wife complained repeatedly, but said his doctors and a Boston Scientific representative told them that spinal-cord stimulators don’t cause the kind of problems he had.

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That runs counter to Boston Scientific’s own literature, which acknowledges that spinal stimulators and the procedures to implant them carry risks, such as the leads moving, overstimulation, paralysis and infections.

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That also is not reflected in the AP’s analysis of FDA injury reports, which found shocking and burning had been reported for all major models of spinal-cord stimulators. For Boston Scientific devices, infection was the most common complaint over the past decade, mentioned in more than 4,000 injury reports.

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In response to questions, the company called infection “unfortunately a risk in any surgical procedure” that the company works hard to avoid. It added that the FDA’s data “shouldn’t be interpreted as a causal sign of a challenge with our device. In fact, many examples of reportable infections include those that were caused by the surgical procedure or post-operative care.”

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“In our internal quality assessments, over 95 percent of the injury reports were temporary or reversible in nature,” the company added.

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Taft said had he known the devices hurt so many people, he would have reconsidered getting one. A Boston Scientific sales representative tried reprogramming the device, he said, but nothing worked.

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“I told them that it feels like the lead is moving up and down my spine,” Taft said. “They said, ‘It can’t move.’” But in July 2014, X-rays revealed the lead indeed had moved — two inches on one side.

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Highsmith told the AP the electrode broke from “vigorous activity,” though Taft said that would not have been possible due to his condition. Taft said he was in such bad shape after his surgery that he was never able to redo the patio and deck for his wife or do anything else vigorous.

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That October, Highsmith said, he operated on Taft to install a new lead, tested the battery and reinserted it.

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Still, Taft’s medical records show that he continued to report numbness, tingling and pain. During a January 2015 appointment, a physician assistant wrote that the device “seemed to make his pain worse.”

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The stimulator was surgically removed in August 2015. The following June, Taft got a second opinion from a clinic that specializes in spinal injuries, which said he had “significant axial and low back pain due to implantation and explantation” of the stimulator.

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Highsmith said other doctors have documented severe arthritis in Taft and that, while he has not examined Taft in more than three years, it’s “likely his current condition is the result of disease progression and other factors.”

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He did not answer questions about whether he informed Taft of the risks associated with stimulators.

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The doctor said the overwhelming majority of his spinal-cord stimulator patients gain significant pain relief.

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“Unfortunately, in spite of the major medical breakthroughs with devices like these, some patients still suffer from intractable pain,” he said.

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Renee Taft, a paralegal, reached out to Boston Scientific in 2017, but said the company refused to help because her husband’s stimulator had been removed and blamed Taft for his problems, also saying he had engaged in “rigorous physical activity” after surgery.

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In the letter from the company’s legal department, Boston Scientific also noted that federal law shielded manufacturers from personal liability claims involving medical devices approved by the FDA.

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In response to questions from the AP, Boston Scientific again blamed Taft’s “activity level” but didn’t elaborate. The company also said other factors could contribute to his problems such as “hyperalgesia, a phenomenon associated with long-term opioid use which results in patients becoming increasingly sensitive to some stimuli.”

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Brenda Simpson-Davis of Milton, Florida, said Boston Scientific also disregarded her complaints after her husband suffered a life-threatening infection following implant surgery.

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George Davis, 57, had three Medtronic spinal-cord implants between 2003 and 2007 after a car accident mangled his back. They temporarily reduced some of his pain, but he said the non-rechargeable batteries that were supposed to last for years never did and he tired of multiple surgical removals.

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In 2015, his pain management doctor urged him to try Boston Scientific’s Precision Spectra, which he called the best on the market. Unlike Davis’s old models, it had a rechargeable battery.

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Within weeks of his surgery, Davis said, he started feeling pain shooting down his back and legs and a burning sensation at the implant site. After his skin started turning black, the doctor performed emergency surgery to remove the device.

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Months later, Davis reluctantly agreed when his doctor urged him to try another Boston Scientific model but found that device even worse.

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Over the next year, he spent more than 100 days in and out of hospitals battling a life-threatening infection. Today, Davis says he has trouble getting out of bed.

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Boston Scientific said it never received the stimulators that were implanted in Taft and Davis so could not “conclusively identify” the causes of their problems. “Numerous factors can contribute to a patient’s ongoing symptoms, from increased physical activity to the onset of pain in other areas,” the company said.

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Simpson-Davis said she spoke with attorneys around the country, who warned her about the high bar set for a lawsuit . Finally, she found a Texas lawyer who said he will consider taking the case if she can find another two dozen potential plaintiffs.

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“To me, it’s not about the money, It’s about the people. It’s about them knowing what they’re getting themselves into,” she said.

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For years, Valerie McJunkin had been seeking relief from a rare neurological disorder that made her legs and feet feel like they were on fire. So when a medical device company sales representative and her West Virginia pain management doctor recommended what sounded to her like a “miracle device,” she was all in.

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They said a new kind of stimulator — one that targeted a bundle of sensory nerve cells in the lower back — was better than a spinal-cord device. She just needed to undergo a weeklong trial.

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When McJunkin showed up at the pain clinic this January for the trial, the Abbott sales representative was there, along with her doctor and his staff. They explained every detail. This device wasn’t for everyone, but she was the perfect candidate, she recalled them saying.

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Over the next week, they called or texted her nearly every day to see if the stimulator was easing her torment. And since the trial did seem to help, she went ahead with the implant.

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Within days, though, the device began randomly shocking her — a sharp pain that felt like a lightning bolt.

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When McJunkin called her doctor and the Abbott representative, she said they suggested that she was at fault because “stimulators don’t do that.” It wasn’t until she received a certified letter from Abbott in March that she learned it wasn’t all in her head: The company said her device was being recalled due to a glitch that could cause patients some “discomfort.”

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Since 2005, there have been 50 recalls involving spinal stimulators, averaging about four per year in the last five years. Roughly half the recalls involved stimulators made by Medtronic, the world’s largest device manufacturer, though none warned of a risk of serious injury or death.

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In early September, McJunkin invited an AP reporter to accompany her when she met with her doctor and the company sales representative to request the device be removed.

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The Abbott salesman and her doctor both suggested she get another stimulator, saying she had run out of options, especially since her doctor couldn’t write prescriptions for opioids because of a government crackdown. If she didn’t get another stimulator, he said, she faced a lifetime of pain. He did not suggest other options, such as steroid shots or continued physical therapy.

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“I’m not trying to force your mind,” the doctor said. “But for me, would I want to live my life like this?… If I get that new battery and it totally helps, that changes my life 180 degrees, right? But if I don’t I already know what’s going to happen to me: I’ll be suffering for the rest of my life.”

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On the drive home to Martinsburg, West Virginia, McJunkin gripped the steering wheel of her car, her tattoo reading “persevere” visible on her forearm.

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“You trust your doctor. You think he’s going to do the right thing,” she said. She paused, fighting back tears. “I just wanted to live without pain. But now that hope is gone.”

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In late October, her doctor removed the device.

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The experience of nearly all the 40 patients interviewed by the AP mirrored McJunkin’s: Their pain was reduced during the trial but returned once their stimulators were implanted.

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Experts say the answer may be a placebo effect created when expectations are built up during the trial that only the stimulator can offer relief from pain, exacerbated by patients not wanting to disappoint family members, who often have been serving as their caregivers.

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“If patients know this is a last resort, a last hope, of course they will respond well,” said Dr. Michael Gofeld, a Toronto-based anesthesiologist and pain management specialist who has studied and implanted spinal-cord stimulators in both the U.S. and Canada.

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By the time the trial ends, the patient is “flying high, the endorphin levels are high,” Gofeld said.

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Manufacturer representatives are heavily involved during the entire process. Along with often being in the operating room during surgery in case the physician has questions, they meet with patients to program the devices in the weeks following surgery.

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Most of the patients interviewed by the AP said the adjustments to their devices were performed by sales representatives, often with no doctor or nurse present. That includes one patient who was billed for programming as if the doctor was in the room, though he was not.

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“People who are selling the device should not be in charge of maintenance,” Gofeld said. “It’s totally unethical.”

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In a 2015 Texas case, a former Medtronic sales representative filed suit contending she was fired after complaining that the company trained employees to program neurostimulators without physicians present. She also claimed that a Medtronic supervisor snatched surgical gloves away from her when she refused to bandage a patient during a procedure, pushed her aside and then cleaned and dressed the patient’s wound. Medtronic denied the allegations, and the case was settled on undisclosed terms.

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In the Justice Department case involving Medtronic, a salesman who said he earned as much as $600,000 a year selling spinal-cord stimulators claimed sales representatives encouraged physicians to perform unnecessary procedures that drove up the costs for Medicare and other federal health programs.

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“While there have been a few instances where individuals or affiliates did not comply with Medtronic’s policies, we acted to remedy the situation in each case once discovered and to correct any misconduct,” the company said.

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Gofeld said he believes stimulators do work, but that many of the problems usually arise when doctors don’t choose appropriate candidates. And he thinks the stimulators are used too often in the U.S.

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Nevro, one of the four big manufacturers, has cited estimates that there are as many as 4,400 facilities in the U.S where spinal-stimulation devices are implanted by a variety of physicians, including neurosurgeons, psychiatrists and pain specialists.

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It’s a lucrative business . Analysts say stimulators and the surgery to implant them costs between $32,000 and $50,000, with the device itself constituting $20,000 to $25,000 of that amount. If surgery is performed in a hospital, the patient usually stays overnight, and the hospital charges a facility fee for obtaining the device. Costs are typically covered by insurance.

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The AP found that doctors can make more money if they perform the surgery at physician-owned outpatient surgery centers, since the doctor buys the device, marks it up and adds on the facility fee.

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In Canada, where Gofeld now works, he said the surgeries are done only by those who specialize in the procedures. He said spinal-cord stimulators should be used when pain starts and not after failed back surgeries.

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“By then,” he said, “it’s too late.”

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While manufacturers and top FDA officials tout stimulators as a weapon in the battle against opioids, neurosurgeons like Steven Falowski are the front-line evangelists.

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“Chronic pain is one of the largest health-care burdens we have in the U.S. It’s more than heart disease, cancer and diabetes combined,” Falowski said in an interview.

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He referred AP to Corby, as one of his surgical patients who was helped by a spinal-cord stimulator.

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Corby got the device more than two years ago and says that, after some initial adjustments, he hasn’t had any further problems. He says he wouldn’t trade the stimulator for opioids.

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“I was actually buying them on the street … a little like a druggie because I couldn’t get them anymore” from his pain doctor, Corby said.

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Falowski said opioids are good for acute pain, but were never meant to treat long-term chronic pain. For him, that’s where spinal-cord stimulators come in.

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If they’re used early enough for pain, they can prevent people from going on opium-based pain killers, said Falowski, who speaks at neuromodulation conferences and teaches other doctors how to implant stimulators.

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Since 2013, device manufacturers have paid Falowski — or St. Luke’s University Health Network in Fountain Hill, Pennsylvania, where he works — nearly $863,000, including $611,000 from St. Jude or its new parent company, Abbott, according to the Centers for Medicare and Medicaid Services database. The payments range from consulting fees to travel and entertainment expenses.

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.….Another of Falowski’s patients was Lisa Snyder of Kempton, Pennsylvania, who was searching for relief from a painful nerve disorder. By the time she came to Falowski, she had cycled through three spinal-cord stimulators, which were removed for reasons ranging from infection to rejection.

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“Not everybody could do it, but he was confident he could,” she said.

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After her fourth implant this March, “I complained about this battery right away. I knew it was positioned funny. It burned,” Snyder said.

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AP’s analysis showed Abbott products were more likely than other major models to include reports of a hot or burning sensation near the site of the battery, with about 5,600 injury reports since 2008 referring to the words “heat” or “burn.”

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Abbott said that many of the “adverse events” reports in the FDA’s data stemmed from a device that was voluntarily recalled in 2011. The company added that feeling a temperature increase at the implant site “is often a reality for rechargeable spinal-cord stimulation systems,” which is why the company is now concentrating on devices that do not need to be recharged.

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….Snyder said she felt like Falowski’s nurse and physician assistant downplayed the problems and that the reprogramming of her device was conducted by the Abbott sales representative, with no medical staff present. On at least one occasion, she was charged as if the medical staff was there, when she said they weren’t, according to insurance bills reviewed by the AP.

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.Despite insisting nothing was wrong with the unit, Snyder said, Falowski called her one day out of the blue. “He said ‘Under no circumstances are you to turn it on.’ I asked him why and he wouldn’t say,” Snyder recalled..Falowski then scheduled immediate surgery to remove the stimulator, she said..Falowski called Snyder a difficult patient and said she was receiving “100 percent pain relief” when she had the stimulator removed, adding that she “remained very appreciative of her care.” He added that programming is “performed under the direction of a physician.”.“The physician is not present during the entire programming session, but provides oversight and direction..

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…The only time programming sessions are billed is when the physician is actively seeing the patient during a visit which was the case with this patient,” he said..

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.All Snyder ever wanted was to feel better. Today, she often is immobilized by pain..Before the latest stimulator, she could walk, stand and cook meals. Now, she finds it hard to get out of bed and rarely leaves her house. She says the device has ruined her life....

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“My fear is I’ll be like this forever,” she said...

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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

~~

Comments are welcome.

This site is not for email, not for medical questions, and not for appointments.

~~~~~

For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please IGNORE THE ADS BELOW. They are not from me.

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Spinal Cord Stimulators – Shortcomings of Evidence


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Shortcomings of Evidence for

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Spinal Cord Stimulators

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The journal Practical Pain Management has published a presentation of spinal cord stimulators, SCS’s, made at the International Association for Study of Pain, IASP, World Congress. This adds greatly to my concern that they not be trialed for those who have Complex Regional Pain Syndrome, CRPS. About 8,000 visits per year on my website, double any other topic on pain, are about the damage these devices have inflicted, and the comments are gruesome. See search function, top left above small photo.

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John Markman, MD, recounts what’s currently on the table for SCS and how much more is needed for adequate pain relief. A 2018 IASP World Congress on Pain highlight.”

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“In a presentation titled “Yes, We Now Have the Evidence, But..,.” John Markman, MD, professor of neurosurgery at the University of Rochester, outlined some shortcomings of the existing evidence for spinal cord stimulation (SCS) including heterogeneous populations studies.Dr. Markman’s main concern with SCS is the level of uncertainty he has with the procedure—how it works, whom it works for, and the non-specific treatment effects of the procedure. To rectify this, he has begun to conduct crossover studies in his practice to get a better grasp of these questions. “Imagine if, in 2018, the indication for putting in a spinal cord stimulation system were as matched to mechanism as a cardiac pacemaker,” Dr. Markman posed the audience, noting that SCS implementation remains heavily dependent on self-reporting.”

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…snip…

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“Existing Evidence”

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“SCS technology is still evolving, Dr. Markman said. While self-reporting is still prevalent, what has changed in the past five decades is the upgrade from a single case report to prospective, multinational, randomized clinical trials. One landmark trial, for instance, randomized 100 failed back surgery syndrome (FBSS) patients with predominant leg pain of neuropathic radicular origin to receive SCS plus conventional medical management (the SCS group) or conventional medical management alone (the CMM group) for at least 6 months.Compared with the CMM group, the SCS group experienced improved leg and back pain relief, quality of life, and functional capacity, as well as greater treatment satisfaction. Between 6 and 12 months, five SCS patients switched to CMM, and 32 CMM patients switched to SCS. At 12 months, 27 SCS patients (32%) had experienced device-related complications. In selected patients with FBSS, SCS provided better pain relief and improved health-related quality of life and functional capacity compared with CMM alone.”

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“Other significant trials for SCS include North, et al, from 2005,3 and Kemler, et al, from 2008.4 “This is an era marked by open-label studies,” Dr. Markman said. Enormous technical innovation, improvement of clinical trial designs, and larger study populations (prospective, head-to-head), are just some of the factors leading these recent advancements.”

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“Evidence Still Needed”

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“Despite the success in recent years of more trials being applied to SCS, many questions have yet to be addressed. For instance, the totality of study participants to date is only 973, a study population that is “poorly characterized,” according to Dr. Markman. “Chronic pain after spine surgery, that’s an iatrogenic injury, and it’s a very heterogeneous group of patients, some of who have axial-predominant neuropathic pain.” In one study,5 of 97 subjects who completed a trial of HF10 therapy, 90 (92.8%) had significant back pain relief and were eligible for an implant of an SCS system. In comparison, 81 of 92 subjects (88.0%) were successfully trialed with traditional SCS (P = 0.33). “Which is incredibly high in my opinion. Think about in your own practice how many times you’ve tried someone on a therapy for a heterogeneous pain problem, some of which is nociceptive, some of which is neuropathic…and 92% of them get relief? It just doesn’t reflect anything in my practice,” Dr. Markman said.”

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“In addition to this, the lack of blinding in trials, as well as the lack of controls, makes the results weaker by design. External challenges include the regulatory framework for devices being much less rigorous for analgesic drugs, for example. Study sponsorship has also been an issue, as many current studies that are industry-sponsored have a clear publication bias compared to payor studies that are normally negative in nature, Dr. Markman suggested.”

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“Devices are also constantly changing. “It’s a moving target,” he said. “It’s like comparing your phone in 1967 to your phone today. It’s not really a great comparison.” A generation of studies now has emerged that has made comparisons to figure out what the on-target analgesic actions are and what non-specific treatment effects have been seen. “The disruption in technology is changing the stakeholders and how they engage,” Dr. Markman said. He concluded by noting that, due to an impact-style meeting having an enormous accelerant effect on deciding the “rules of the road” for oral analgesic trials, a group is now meeting with representatives from the International Neuromodulation Society and the North American Neuromodulation Society to develop consensus guidelines for spinal cord stimulation.”

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The material on this site is for informational purposes only.

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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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Comments are welcome.

This site is not for email, not for medical questions, and not for appointments.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please IGNORE THE ADS BELOW. They are not from me.

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Medical Marijuana – Cannabis for Pain


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These references include links to peer reviewed journal articles on cannabinoids. They are taken from the Reference Library of the outstanding RSD Association in Connecticut, whose mission is to help relieve pain. They have grouped the articles in helpful folders by subject, and this is one of many folders on the immense subject of pain. Please donate to them as their research helps everyone with pain, not just nerve pain or CRPS. May the references help enrich your lives and help support congress and regulators in legalizing cannabis across the country — the attorney general just now voted in by congress opposes medical marijuana.

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Be aware that states should monitor the plant for bacteria, fungus, pesticides, and heavy metals as discussed in this Smithsonian article:

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“Washington, the second state to legalize recreational marijuana, does require such testing for microbial agents like E. coli, salmonella and yeast mold, and officials there rejected about 13 percent of the marijuana products offered for sale in 2014.”

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Concentrates may be made with toxic butane or heptane. If you have cancer or are immunosuppressed – cancer and autoimmune diseases fall into that category – it is safer not to inhale. Cannabis can be used on the skin or swallowed but be aware when swallowed, it takes 60 to 90 minutes before you feel the effect. It is easy to overdose when swallowed. Check your blood pressure and pulse before use and again while you feel its effect.

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The article also points out that on testing, many of the plants have high THC but no longer have CBD, one of the 86 known cannabinoids, the one that blocks the psychoactive side effects of THC. On its own, CBD has many medical benefits.

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For those who have allodynia, the most intense form of nerve pain, pain that is triggered by a light touch or breath of air:

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Keep in mind that chronic pain is much harder to treat than cancer pain and acute pain. Chronic nerve pain is the hardest of all to treat. We need to be able to prescribe anything that helps. Pain can lead to suicide in these extreme pain conditions.

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Watch out for the munchies – do not get fat.

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O’Shaunessy’s today published articles that may be useful for your Senators, healthcare insurers and states:

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“some additional articles published by cannabis clinicians in O’Shaughnessy’s showing the strength of aggregated case reports. We hope the MBC Marijuana Task Force will give them serious consideration.”

 

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Cannabinoids

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Spinal Cord Stimulators – comment on RSD


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Spinal Cord Stimulators 

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 Craig’s comment

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By no means do I mean to say that I or anyone else has better insight into how to treat pain, but I am against spinal cord stimulators [SCS’s] for treatment of pain due to CRPS, and possibly against use in other situations. I demand that the billions in profit they made be put into a retrospective and prospective study of damage caused by them in order for them to give full informed consent.

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I have 3 goals writing this.

  1. SCS’s

  2. Craig’s experience

  3. The Only Real Answer for severe pain, not damaging the system with opioids

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Informed consent is never given for spinal cord stimulators because it requires truth telling, something our corporations have been reluctant to do. Business ethics are not medical ethics, as we keep being reminded daily in the headlines.

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I enclose, below, a generously expressed and detailed comment by a man who had the patience to sit down and  write the painfully gory details so you can weigh-in on your decision whether to follow your pain specialist’s opinion to give you one. I don’t want anyone to feel suckered into choosing them and if I had pain I’ll admit I’d crave relief too. Anything. I’d be in line before the doors open.

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But if you have CRPS, spinal cord stimulators will create more pain. CRPS evolves unpredictably, by a will of its own. I know some very desperate patients with CRPS everywhere including face, mouth, gums, tongue, organs, trunk, limbs. Spinal cord stimulators will create more pain. Keep in mind, I don’t see the 5 year success stories even for lumbar disc pain. They don’t need me if they are pain free.

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But if you have CRPS and desperate need for pain relief because all else has failed — every known drug in highest possible doses of ketamine, propofol, opioids for weeks in ICU fail to even touch pain— there is one thing, and only one thing to do and I will set it out below. I just sent my recommendation to a patient with CRPS in extreme pain.

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My recommendation, below, is for patients who have nowhere else to turn.

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First I’ll mention the problems Craig encountered with SCS’s. He sent his comment to the opening page of this blog, so I will reproduce below. 

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I am currently undergoing a trial Medtronic SCS. I have had to have it reprogrammed 3 times since it was installed 5 days ago. I have had sensations and issues that I have addressed with my rep and my neurosurgeon. I get a severe headache when the unit is turned on. I get the constant feeling of having to urinate. I have current running through my testicles which they can not seem to program out and I am getting little pain relief. I have had to failed back surgeries, many failed injections and I have CRPS. The leads that were inserted when I was in the table covered my mid back and both legs. After I got to my feet and waited while they programmed the unit in another room. They came in and plugged it in and I no longer had coverage on the right side. My crps is in both legs, my hands, arms and face. The lyrica helped to tamp down some of the burning but I am in pain 24/7 and this was my last resort. I have scar tissue completely surrounding my S1 nerve. By the grace of God, I am on my feet, on crutches. I seem to get a look of disbelief when I tell them the unit is causing these issues or it’s not giving me the relief I was counting on. Relief, only to cause greater issues and pain. Is not relief to me. I can not wait to get this trial out of my back. I believe the leads slipped and that is why I am not getting the full coverage I had on the table. The issues I have had are as follows: severe headache, constant feeling of having to urinate, extreme joint pain, abdominal pain, sleeplessness, involuntary jerking, surges in current even when sitting still. Intense pain around the lead insertion site. Current uncomfortably running through my testicles, regardless of setting. It is my opinion there is still not a lot known about crps and I have read evidence of people have great success with these units. Everyone reacts differently. My body obviously creates a lot of scar tissue and my orthopedic surgeon created a fair amount herself. I can’t imagine even more or being forced into a chair for yet another unlucky decision. The medication helps and I have lived this far without the optimism that it would end soon. I had high hoed for this device but I don’t think it is right for me.

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One of my patients with CRPS was hospitalized for weeks with recurring unusual abscesses and required repeated surgery of hand and forearm. Even before surgery, she had failed opioids, failed ketamine, and was in ICU for weeks and weeks while the same medications were still given along with Propofol and IV Tylenol. Nothing helps her extreme pain.

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Anesthesiologists on staff in ICU threw everything they had at the pain for weeks. Most anesthesia pain doctors would have probably done what they did because that is the limit of tools we have.

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When you have hit the limit of benefit from opioids, ketamine, propofol, we have nothing else that treats pain with one exception: drug holiday.

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Stop all analgesics including Tylenol that destroys the liver as severely as cancer, the severity of which was newly discovered and published yesterday.

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The receptors for these analgesic drugs have up-regulated to such an extent they have caused the situation. Again, I stress, everything that was done during the ICU admissions would be done by any anesthesiology pain specialist. Those are the only tools. They cause the problem. The same for opioid induced hyperalgesia. We used to do it with Parkinson’s drugs in the 80’s.

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The only way to rehabilitate the up-regulation of all those receptors that have now exploded in numbers, immune to anything you throw at them, is stop the drugs.  Stop all of them for weeks, maybe months, years, no one knows, you are all the human guinea pig waiting to happen. But if we restart them, how long do we wait, how quickly will it again lead to this massive hyper-excitable state of pro-inflammatory cytokines that we know have gone wild, flooding the CNS. A flooded engine will not restart.

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Ketamine at least is known to reduce pro-inflammatory cytokines, but the system is too busy exploding, birthing new receptors that take over, and you’ve got a 55 car pile up. Well, more like millions I’d guess. No scientist here. Clnically, when can we resume something after a drug holiday, how soon and which drug? I’d avoid opioids because they create more pro-inflammatory cytokines. Choose ketamine, because they reduce pro-inflammatory cytokines, but if it works at all, stop it at first sign of tolerance, which is the need for increased dose. It becomes less effective. Walk a fine line, endure more pain because unless you do, it will no longer help. Opioids, analgesics of many kinds. 

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How do we get you through a drug holiday because we know withdrawing these drugs will trigger even more pain for possibly weeks until the system settles down?

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Pain storms, hurricanes

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This is complex regional pain syndrome where we see this insanity of pain storms. There is no other condition, unless several neuropathic pains in people with cancer, nowhere I have seen this type of pain in decades except CRPS – comparable to pain of subarrachnoid hemorrhage, blinding pain.

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No one has answers. None. One university does outpatient infusions of ketamine six hours daily for 8 to 12 weeks. Does it help? A small percentage. Outpatient, 6 hours daily, 5 days a week, staying at a hotel, 8 weeks.

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This is CRPS/RSD. No one has answers. It is futile to throw more of the drug in the system. That is my opinion. You have a choice and may choose otherwise. It is your body. You may stay on monthly opioids for decades, until you finally admit how poorly they work. A drug holiday is what we did in the 70s during my ancient training with Parkinson’s patients. They needed full 24-hour support. The American medical system has changed since then and those are not options currently available—cost.

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You need full psychological and psychiatric support.

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The Only Real Answer

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The country needs to invest $10 million to complete the clinical trials needed for an injectable, long-lasting interleukin 10 [IL-10], the anti-inflammatory cytokine. It already has full scientific and animal studies performed by and with the world’s foremost glial scientist at University of Colorado Boulder. Professor Linda Watkins has won awards from many countries. She has been the keynote speaker at the annual academy pain meetings for years. IL-10 can relieve pain for three months in animals that have intractable chronic neuropathic pain. This is not new —–NIH I’m looking at you to fund clinical trials. And those of you who care, do a Kickstarter to fund the clinical trials.

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This is the power of the innate immune system. NIH would rather fund research on the unknowns like stem cells rather than the known. It’s known for decades, NIH does not like to fund pain research. Glia are not all about pain. They are the innate immune system, the key to Alzheimer’s, neurodegenerative diseases, almost all known disease including atherosclerosis. It’s all about inflammation. We need the trials to stop giving drugs that cause inflammation, opioids —–CDC fiats are not as good as a drug that relieves pain, a drug that really works on mechanism. Where will the addicts go if the ER only has IL-10 for pain? That is one way to overspend on ER visits.  And NIH, please get us some real clinical research funding on how to use glia for our benefit. Get us some research on the entourage effect, combining medications to achieve relief especially for neuropathic pain.

Then bring on some crack negotiating teams from insurers to do some negotiation about pharmaceutical prices. Our new president has mentioned that.

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Please bring this to everyone’s attention. One way to get a grip on pain and/or depression is to build hope, help others, and energize behind a goal.

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Kickstarters work to raise tens of millions overnight. 

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IL-10 – animals have been shown to be pain free for three months, already proven in animal studies, by one of the world’s most widely acknowledged pain specialists Professor Linda Watkins, PhD. We need the final steps to fund the clinical trials in humans.

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The material on this site is for informational purposes only.
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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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This site is not for email and not for appointments.

If you wish an appointment, please telephone the office to schedule.

~~~~~

For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please IGNORE THE ADS BELOW. They are not from me.

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Pain Much Better off Opioids


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Patient disabled with CRPS/RSD markedly better after off opioids. The intense nerve pain began in his left ring finger eight years ago, not the dominant hand. Now he has pain everywhere below the neck. He has been bed-ridden for years.  Now his “bones feel like ice, freezing from the inside out and shaking.”

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Had been on Fentanyl patch 100 mcg/hr for years. Dose was lowered to 75 mcg/hr, then his pain specialist did an involuntary taper off in two short weeks. Both of those doses are far higher than the new CDC guidelines from 2016. Fentanyl is 100 times stronger than morphine.
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He says his pain is feeling much better off the opiates. He is quite surprised. On Fentanyl 100 mcg/hr patch, he rates his pain then as 6 to 8 on scale of 10.
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Pain is now  2 to 4 off opioids the last 3 to 4 weeks. Even the hands are not hurting as much..

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Initially after the abrupt taper, he spent 7 days in bed, then says he “started getting out a little bit, now hands are not hurting as much. Neuropathy even isn’t hurting as much.”

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I have seen several patients who said opioids caused pain, all over the body in places they never had pain before or since.

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Yes, clearly many are helped by opioids. But many are simply afraid to taper off. I understand this. The question then is, what will we do to treat pain? Most doctors have nothing else. Patients rightfully fear stopping opioids.

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We need to understand there is outstanding science that demonstrated years ago that opioids cause inflammation in the CNS (brain and spinal cord). Inflammation causes pain.

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Treat pain with glial modulators that relieve inflammation in the brain, neuroinflammation. These are off label and most of them must be compounded. Compounded medications are not covered by your insurance — thanks to pharmaceutical donations to congress.

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Cannabis (medical marijuana) can help some with spasm, pain, insomnia. Also not covered by your insurance — thanks to pharmaceutical donations to congress. But patients in New Mexico were able to get insurers to reimburse them for the cost of their medical cannabis.  Congress should allow dispensaries free access to banking systems and allow insurers to directly pay the cost for medical use. We all know the emperor has no clothes. Lets be real. Pain leads to desperate measures.

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Let me say right now, to all those who will send in comments attacking science, attacking me, attacking my clinical experience (my patient reports) on opioids, I will not post your attacks on these pages. I do prescribe opioids to select patients. I strongly believe all pain should be treated initially by glial modulators that relieve neuroinflammation before we begin causing pain and inflammation by ultimately having nothing else to turn to and then prescribe opioids. There is no better solution because pharma wants you on a drug for life. That’s money in the bank, forever, every single month for decades. It’s awful.

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The material on this site is for informational purposes only.
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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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This site is not for email and not for appointments.

If you wish an appointment, please telephone the office to schedule.

~~~~~

For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please IGNORE THE ADS BELOW. They are not from me.

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PEA Capsules & PEA Cream from Vitalitus – Soothamide


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Palmitoylethanolamide (Pea in the US, PeaPure in Netherlands) is a glial modulator, analgesic, anti-inflammatory, neuroprotective and anticonvulsant  with mechanisms involving the innate immune system and mast cells. It binds to a receptor in the cell nucleus. The major focus of hundreds of publications on it has been inflammation, neuropathic pain states and mast cell related disorders from University of Oxford,  Journal of Arthritis Research and Therapy, Journal of Pain Research, University of Bologna School of Dentistry (a study for TMJD pain), etc.

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It is a food supplement. It is a naturally occurring lipid amide, i.e. the body makes it, plants make it. It is available as a capsule and a cream without prescription. It may take days to weeks to work, but I’ve seen the cream work in two minutes – shock!  The relief is amazing for someone who has failed everything for intractable pain.

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Soothamide Cream is 2% palmitoylethanolamide from Vitalitus in the US.

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It’s been fascinating to see the cream work for so many pain syndromes including severe CRPS/RSD nerve pain! arthritis, muscle and severe ligamentous strain – often in less than two minutes! Not everyone, not every pain benefits but it is well worth trying and very affordable for large amount.

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One senior whose osteoarthritis in finger joints has been painful, very stiff, and prevents him from only very slightly being able to bend four fingers on his right hand. It’s been years since he’s been able to touch tips of the fingers to his palm because of stiffness and pain. They just would not go.

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After applying Soothamide cream, in less than 20 minutes he was able to fully, easily and painlessly bend all four fingers to the palm without any trace of stifness – quite astonishing. And the next day, three of the four fingers still had complete 100% relief 20 hours later, but it did not last for the index finger, even applying it later to that finger over those 20 hours. Twenty hours relief is amazing for three fingers after years of severe stiffness and pain. Relief may have been hours longer, but he took off for the day and data like this is difficult to pay attention to, and then to make a memory note of how long.

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Another with knee pain and significant joint effusion (fluid that creates pressure inside the joint), had relief for 3 hours after one application in the office.

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I have seen the cream relieve low back pain completely in less than two minutes. This was the father of a patient who had tried it in the office and it failed to help that patient, but she had a little left on her hand and schmeared it across her dad’s back. All pain gone in less than two minutes!  I am assuming this was muscle strain, not deep mechanical structures in the spine.

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Another patient with RSD pain on the foot had no benefit, but she then applied the Soothamide to a very severe pain from torn ligament in the arm that was more painful than her RSD. It was gone in less than two minutes, to her shock and delight.

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The cream has only recently been available in the US, and I have seen it help so many patients including those with CRPS/ RSD nerve pain. Most relief from creams is short lived, but if you see 4 hours of relief, or 20 plus hours as the patient above, it is very special.

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The cream has been such fun! Having seen even the severe nerve pain of CRPS/RSD improve or be astonishingly gone -!- in less than two minutes -!- it helps doctors forget the pain of being unable to offer anything more. Here we have capsules and cream that do not require prescription. And even in the most extreme pain syndromes is worthy of a try.

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PEA capsules – open and place powder under tongue for instant relief of breakthrough pain.

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That was a blessing in the middle of last night for one of my patients with RSD who was having a severe flare of pain. In August, she had started PEA capsules 3 twice daily – always take with something fatty (milk, peanut butter, etc) to aid absorption. In 3 weeks it had reduced her lower limb pain from severe to mild-moderate while in bed. Now months later, after reducing another medication briefly due to side effects, pain flared severely. What to do?

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I instructed her to open the PEA capsule and place the powder under tongue to absorb there. She had relief. I don’t have data to relate more as yet but hope to post as I learn from her and hopefully other patients who write in their comments. How much is safe? I will try to find more information. We know the body makes it, plants make it and at doses of 6 capsules daily it causes no side effects.

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The material on this site is for informational purposes only.
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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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This site is not for email and not for appointments.

If you wish an appointment, please telephone the office to schedule.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please IGNORE THE ADS BELOW. They are not from me.

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Medical Marijuana Proven to Save Lives, Science Issue on Pain, November 4, 2016


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The entire issue is devoted to Pain 

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From “Pot and Pain” page 566:

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Analyzing Medicare drug prescription data from 2010 to 2015 in states where medical marijuana is legal, David and Ashley Bradford at University of Georgia in Athens found significant differences in prescription of medications for anxiety and nausea. “But one condition stood out from the rest: ‘The effect for pain was 3 to 4 times larger than all of the others.'”

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“In medical marijuana states, each physician prescribed 1826 fewer doses of conventional pain medicines each year.” The reduction in pain prescriptions is even more dramatic in the younger Medicare Group.  [presumably disabled by pain]

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Marcus Buchhuber, previously at the Veterans Affairs Medical Center in Philadelphia, examined death certificates in all 50 states between 1999 and 2010. In states that permitted marijuana, there were nearly 25% fewer deaths from opioid drug overdose.

In 2010 alone, “that translated into 1729 fewer deaths” from overdose. And the effects grew stronger in the 5 to 6 years after medical marijuana was approved.

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Further information on Marijuana here.

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The material on this site is for informational purposes only.
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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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This site is not for email and not for appointments.

If you wish an appointment, please telephone the office to schedule.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please ignore the ads below. They are not from me.

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Medication Summary for Intractable Pain, CRPS/RSD


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  Medication Summary for

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Intractable Pain, CRPS/RSD

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I spoke only briefly this morning at the RSDSA conference but there is so much to add. Most importantly, thanks to RSDSA for helping so many people with CRPS. They fund pain research, they are starting a free children’s camp, and now offer physicians one hour free CME teaching about CRPS.

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Holistic view, 36 points – that’s how I view caring for brain and nerves, very similar to the details used by UCLA Alzheimers Research Unit. In June 2015, I posted on their work on memory loss, dementia. We know chronic pain means inflammation in the brain, excess of proinflammatory cytokines. CT scans show memory loss and brain atrophy in those with chronic low back pain.  Can this inflammation lead to Alzheimers? Even if it doesn’t, why not maximize what we know we can do to help brain. As I view it, simply be meticulously detailed in giving the central nervous system (CNS) the best chance to relieve or prevent pain or disease.

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Below is a brief list.

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To find detail and sometimes depth, check the alphabetical lists on either side column until you see the category or tag when I first posted on that. Or simply plow through 7.5 years of detail with references. You do the work to check the side columns as I have no time to embed links below, taken from throughout this site.

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For now just a list of medication players that may be strikingly important in trying to bring intractable pain into remission even after 20 years. Yes, even chronic for decades.

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The list applies to intractable pain of all causes. I omitted listing standard interdisciplinary approaches commonly used by every pain specialist around the world. My patients have failed all those.

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Some patients with CRPS combine my medications with ketamine infusions.

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For those who remain on opioids, ultra low dose naltrexone (10 to 60 mcg three times daily) can significantly reduce pain, reduce opioid induced hyperalgesia, reduce windup, and thus reduce the dose of opioid needed to give improved relief.

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Opioids cause pain and trigger pro-inflammatory cytokines that create more pain.

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I strongly recommend slowly, gently tapering off opioid, and remaining off for 3 weeks before the following is trialed:

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 1. Vitamin D is anti-inflammatory. Important. Helps pain, depression. If bone loss is an issue, you will not absorb calcium from food if D is low. Mayo Clinic’s publication in 2012 showed more morphine is needed for pain if D is low. Huge literature of its benefit for depression. First topic I posted on – it is that important.

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2. Vitamin B6 can cause burning pain from scalp to toe, a toxic neuropathy. It can be toxic to brain. It is loaded in tons of soft drinks, “energy” drinks, supplements.

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3. MTHFR mutation may be present. Body cannot process  the B12 and folic acid you are eating or taking in supplement. A simple blood test, costly. Treatment is as simple as buying methyl folate and methyl B12 – no prescription needed. Folic acid in particular is profoundly important for one of the major energy cycles in the body. Can cause multiple conditions, some fatal, all from one single cause.

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4. Minocycline 100 mg/day is the dose I use but higher doses could be given. It is used daily for decades for acne. I may prevent spread of CRPS if given before surgery, dental work, even minor procedures. I start 24 hrs before, and continue for days after full recovery from surgery.

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5. Testosterone  in either male or female is depleted by opioids, it may be depleted by stress. Low T is a risk for depression, weakness and osteoporosis.

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6. Naltrexone low dose (LDN) – profoundly important. A glial modulator. Lifelong use.

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7. Dextromethorphan – reduces hyperexcitable glutamate

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8. Oxytocin

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9. Memantine – double the Alzheimers dose for CRPS. Like ketamine, it blocks the NMDA receptor.

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10. Lamotrigine

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11. Palmitoylethanolamide (PEA, PeaPure) a glial modulator, also acts on mast cells. A food supplement. No Rx. Your body makes it. Plants make it. Capsules & cream

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12. Ketamine via nasal spray, under tongue combined with IV or not, works on glutamate-NMDA receptor. Not an essential drug. Where ketamine has stopped working, patients have become pain free after years of CRPS.

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13. Creams combinations, so many

most of my CRPS pts very much like   Mg++/guai  10% each.

You may or may not trial various combinations lido/keto/keta, etc. Numerous. DMSO 50%.

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14. Medical Marijuana (CBD, THC, terpenes) Marijuana saves lives. Entire issue of Science, November 4, 2016, devoted to pain.

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NAC and alpha lipoic acid are noted by research from the Netherlands.

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Appendicitis

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If it has not burst, treat it like the infection that it is. Surgery may never be needed. I posted details of publications early 2016 with a case report. That young man was being rolled into the OR, instead was discharged 100% better without surgery 2 days later.
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Medications target 3 main systems

as discussed at the conference

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The opioid receptor – opioids create pain. They trigger glia to produce pro-inflammatory cytokines. Opioid induced hyperalgesia may occur. Cannot be used with low dose naltrexone.

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The glutamate NMDA receptor – ketamine, memantine

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Glia, the innate immune system – glial modulators

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Before they see me, my patients have failed all prior therapies even ketamine coma. I view it like football. You have one guy running down the field with one ball. Do you want to win the game? You’ve dealt with this for years. Let’s not prolong it. Hit it with my main choice of meds all at once. Jump on it. What if you get 10% relief – will you even notice 10% after many years of severe pain? But if you get 10% from each of 5 meds, then you are talking 50% relief as a start. Address those 3 main pain systems – even without ketamine – and I have posted a case report after 20 years and 3 suicide attempts before seeing me, she has been pain free for about 4 years as I recall. A surgeon nicked her sciatic nerve when she was 27. Two years ago, pain free, running on her treadmill, she twisted her ankle. She has permanent foot drop from the sciatic nerve injury, but even spraining her ankle did not flare her CRPS. Twenty years of CRPS, pain free for about 4 years. And ultimately, years ago, she was tapered off all the drugs with one exception: LDN lifelong.

 

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Most importantly, I did not have time to relay a very special message from my patient in Brooklyn:

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She had her first 2 or 3 pain free days this week, as she slowly increases doses of medication. She’s not yet at maximal effect and even then there can be increases. Sending love and courage.

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MOVEMENT

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Watch this on the RSDSA video, afternoon speakers, the parents of young ones who had RSD discussed today all the toys and games they had to devise to slowly force yourself to move through the pain, every single day, several times a day, all day, begin to move the body as much as you can. Set goals and slowly, at a pace you set, do the work. Make progress. Go forward. Keep moving. Do whatever you can to keep moving.

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RSD support groups are essential and I am glad to see the RSDSA list of so many throughout the country.

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There is so much more. Indeed, at least 36 points discussed on June 2015.

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The material on this site is for informational purposes only.
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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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This site is not for email and not for appointments.

If you wish an appointment, please telephone the office to schedule.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please ignore the ads below. They are not from me.

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Ketamine Survey for MD’s from RSDSA – Please Help


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Jim Broatch, Executive Director of RSDSA requests help from doctors giving IV Ketamine to treat CRPS. Please ask your doctor to do the survey. 

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 https://www.surveymonkey.com/r/ZPP9BXY

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And remember, if you shop Amazon, you can direct Amazon to contribute a portion to RSDS.org —- many thanks! 

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This site is educational, not for email.

Relevant comments are welcome.

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Complex Regional Pain Syndrome in Remission 6 years


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 Complex Regional Pain Syndrome

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Celebrating six years of complete remission

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Why ketamine should never be used alone

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I first posted her case here. 

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For years, pain below both knees was 8 to 9 on scale of 10, “like I had swallowed a fire burning.”

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She was unable to stand or walk for more than 4 years before seeing me. This week, I again saw this very healthy athletic RN who at almost 70 of age is very youthful, very energetic. She failed IV ketamine given first by Dr. Schwartzman daily for one week, then boosters for 8 months.

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After 8 months of ketamine, then no response at all. None. 

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That’s when I prescribed other glial modulators and rational polypharmacy that brought CRPS into remission. Then very very slowly tapered off all but one, leaving only low dose naltrexone (LDN) for the last 8 years. Zero pain. None. Hiking, working, fully active.

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When used in conditions with known neuro-inflammation, rats or human, LDN is a one of the most powerful, most effective glial modulators I have ever seen clinically in my patients in the last 15 years.

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Until proven otherwise clinically, LDN should be taken lifelong in those cases.

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This website is not for email.

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The advertising is not approved by me and

unrelated to anything on these pages.

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The material on this site is for informational purposes only, and

is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Medicine Costly, Where’s the Gain?


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It’s been seven years since starting this blog April 2009.

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To find information:

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  1. SEARCH – small rectangle, top left above my photo

  2. TAGS – size indicates frequency the topic was posted, bottom left narrow column

     

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Sorry there’s no time to make the site easier for you to find your way around.

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I hope you all have a good summer. Get some much needed rest.

 

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It has been a blessing to have this resource as a way to structure and teach myself the many research publications and ideas I come across in Pain Management, Neurology, Integrative Medicine, Neuroimmunology and, yes, maybe politics of medicine. I only wish I had had this tool decades ago so that I didn’t have to recreate the ones I’ve already reviewed and forgotten in the last 41 years, long before MRI scans and decades before computers in daily medicine. Now we all risk carpal tunnel from repetitive injury, which is why I need to stop posting for awhile.

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This great experience and months of effort has rewarded me, bringing me in touch with the RSD Organization, device manufacturers, editors, publishers, academics, CEO’s, scientists, physicians and patients from around the world. Thank you all!

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The politics of the world is spinning fast, harsh winds are blowing, prices of drugs are beyond belief, beyond beyond — $50,000 to $100,000 a year for new drugs. My own colleagues cannot afford $5,000 insurance deductible for visits and medication. If you are diagnosed with cancer, pray it is January before your $5,000 or $10,000 deductible comes up again at end of year. Medical care in this country is in a down spiral, affordable to the few.

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Until I see something exciting to write about, I’m over and out. What more is there to say?

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Give us some hope in research for pain and major depression. Something more we can use now, something covered by healthcare insurers who seem not to cover much of anything anymore.

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Many insurance companies have not updated reimbursement rates for some specialties for 10 or 20 years. The specialties that had the highest percentage of doctors who accept insurance are cardiology, oncology and orthopedic surgery.

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Only 55% of psychiatrists accept insurance. How sad is that? When people need Mental Health Care more than ever, what do they do but in desperation, some turn to drugs, self treating, while the $3 trillion dollar war on drugs has created and perpetuates the spiral of addiction and endless funding that only serves to enrich the military prison industrial complex.

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War does not work. Medical care works. Instead of war on drugs, war on addiction, we need medical care not war. Medical care for addiction, medical care to prevent pain, to prevent and support mental illness, to prevent addiction.

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While setting writing aside, I shall enjoy turning more of my attention to my patients. It is a privilege to work with so many fine people, striving to put disabling conditions into remission.

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If you find exciting news, please post news below.

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I wish you all a wonderful summer – get some time out!

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For those with CRPS RSD, note a new comment on this site, this past week, on Neridronic Acid.

It was posted in an unrelated section at bottom on my home page.

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 For my Home Page, click here: 

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Welcome to my Weblog on Pain Management!

 

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This site is not for email or medical advice.

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It is not legal for me to give medical advice

unless you are my patient

which means I have done a medical history and examination.

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I generally accept only those

who have failed most or all known treatments,

and only those who I feel I can help.

 

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I interview each patient before accepting.

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Any advertising below is not recommended or condoned by me.

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CRPS – Appendicitis treated with antibiotics can avoid surgery


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For someone who has CRPS/RSD, any trauma including surgery can severely flare CRPS and/or cause it to spread.

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A young man in his mid 20’s was headed for surgery for acute appendicitis last night. He is resolving now, 24 hours later, with IV antibiotics as I suggested. He’s the first in his hospital, a major hospital in Los Angeles.

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Dad called me last night. Mom texted me reports of CT abdomen showing thickened wall of appendix, and all labs consistent with acute bacterial appendicitis: WBC’s elevated 15.1, elevated neutrophils consistent with bacteria rather than virus. Overnight, his generalized abdominal pain is now focal and much reduced, WBC’s are ~8, well within normal range including neutrophils, and he took a good walk in hospital. By day two, WBC count was 5, normal, no elevation in neutrophils indicating brisk response to antibiotics knocking out bacteria. He’ll go home on oral antibiotics probably tomorrow. I asked and was told he has chronic constipation which begs the question if it can trigger infection because of sluggish gut.

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Treatment & References

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1. If you have CRPS, then before any procedure small, large or dental, begin minocycline, a glial modulator. It was found in animal research many years ago to prevent flare or spread of CRPS.

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2. Antibiotics IV for the bowel.

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Below is a list of articles, most from the outstanding library of the Reflex Sympathetic Dystrophy Association. Their vast collection of publications is organized by subject. I strongly recommend donating to them.

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Minocycline inhibits microglia activation and alters spinal Endocannabinoids

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Minocycline Neuroprotective- Johns Hopkins 2010 Archives of Neurology

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CRPS prolonged remission obtained by treatment of intestinal bacterial overgrowth. A multicenter study from Washington University in St. Louis, Stanford, Brown University.

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Effectiveness of Patient Choice in Nonoperative vs Surgical Management of Pediatric Uncomplicated Acute Appendicitis. One year prospective study from Nationwide Children’s Hospital, Columbus, Ohio, JAMA December 2016. IV Antibiotics for at least one day followed by 10 days of oral antibiotics.

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“Conclusions and Relevance  When chosen by the family, nonoperative management is an effective treatment strategy for children with uncomplicated acute appendicitis, incurring less morbidity and lower costs than surgery.”

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Antibiotics alone can be a safe, effective treatment for children with appendicitis. An article from Science Daily about the Nationwide Children’s Hospital study.

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“Families who choose to treat their child’s appendicitis with antibiotics, even those who ended up with an appendectomy because the antibiotics didn’t work, have expressed that for them it was worth it to try antibiotics to avoid surgery,” said Peter C. Minneci, MD, one of the authors.

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The appendix may be an important reservoir of bacteria to populate the gut with good bugs, our healthy microbiome.

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Why don’t we see appendicitis more often in adults?

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Surgery has very real potential dangers that may include infection, abscess, pulmonary emboli, cardiac arrythmias, brain damage from loss of oxygen, death. Years later, there may be chronic abdominal pain from scarring, adhesions of bowel, leading to more surgery to lyse the adhesions. Or acute pain from infarcted bowel when needed oxygen gets choked by adhesions that cause necrosis of segments of bowel, intense pain or perforation, possible death.

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Specific to laparoscopic surgery, I have seen two patients who developed years of intractable abdominal pain from the scope itself and in 2015 there was a recall of scopes across the country that caused death and/or antibiotic resistant infections carried on segments of the scope that could not be sterilized. Another concern, during laparoscopic surgery, they blow up the abdomen under very high pressures to float the organs away from the scope. Very high pressure.

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 Constipation

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Let’s see a study to determine how often chronic constipation is present for years potentially causing the appendix to become inflamed. This young man will be taking a stool softener such as DSS or Colace (same thing), and if that doesn’t work then a prescription for Amitiza is something to consider.

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There are 70,000 surgeries for appendicitis each year in children, usually teens, more often in males. In many cases the appendage is normal and surgery unnecessary.

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Antibiotics for uncomplicated appendicitis could save lives, prevent acute and long term complications, and lower healthcare costs.

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Immune cells make appendix ‘silent hero’ of digestive health

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November 30, 2015. . .Innate lymphoid cells (ILCs) are crucial for protecting against bacterial infection in people with compromised immune systems, report investigators. Their work shows that a network of immune cells helps the appendix to play a pivotal role in maintaining health of the digestive system, supporting the theory that the appendix isn’t redundant.
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The research team, a collaborative partnership between the groups of Professor Gabrielle Belz of Melbourne’s Walter and Eliza Hall Institute, and Professor Eric Vivier at the Centre d’Immunologie de Marseille-Luminy, France, found that innate lymphoid cells (ILCs) are crucial for protecting against bacterial infection in people with compromised immune systems.

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By preventing significant damage and inflammation of the appendix during a bacterial attack, ILCs safeguard the organ and help it to perform an important function in the body, as a natural reservoir for ‘good’ bacteria. The research is published in today’s issue of Nature Immunology.

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Professor Gabrielle Belz, a laboratory head in the institute’s Molecular Immunology division, said the study’s findings show that the appendix deserves more credit than it has historically been given.

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“Popular belief tells us the appendix is a liability,” she said. “Its removal is one of the most common surgical procedures in Australia, with more than 70,000 operations each year. However, we may wish to rethink whether the appendix is so irrelevant for our health.

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“We’ve found that ILCs may help the appendix to potentially reseed ‘good’ bacteria within the microbiome — or community of bacteria — in the body. A balanced microbiome is essential for recovery from bacterial threats to gut health, such as food poisoning.”

Professor Belz said having a healthy appendix might even save people from having to stomach more extreme options for repopulating — or ‘balancing out’ — their microbiomes.

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“In certain cases, people require reseeding of their intestines with healthy bacteria by faecal transplant — a process where intestinal bacteria is transplanted to a sick person from a healthy individual,” Professor Belz said. “Our research suggests ILCs may be able to play this important part in maintaining the integrity of the appendix.

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“We found ILCs are part of a multi-layered protective armoury of immune cells that exist in healthy individuals. So even when one layer is depleted, the body has ‘back ups’ that can fight the infection.

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“In people who have compromised immune systems — such as people undergoing cancer treatment — these cells are vital for fighting bacterial infections in the gastrointestinal system. This is particularly important because ILCs are able to survive in the gut even during these treatments, which typically wipe out other immune cells.”

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Professor Belz has previously shown that diet, such as the proteins in leafy green vegetables, could help produce ILCs. “ILCs are also known to play a role in allergic diseases, such as asthma; inflammatory bowel disease; and psoriasis,” she said. “So it is vital that we better understand their role in the intestine and how we might manipulate this population to treat disease, or promote better health.”

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This site is not for email.

If any questions, please schedule an appointment with my office.

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The material on this site is for informational purposes only.

It is not a substitute for medical advice, diagnosis or treatment

provided by a qualified health care provider.

Relevant comments are welcome.

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For My Home Page, click here: 

Welcome to my Weblog on Pain Management!

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Norway Prioritizes Healthcare for Pain – A Note on Cosmetic Breast Surgery


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Hello Norway! I need an emoji to smile welcome!

Population 5 million – therefore data on pain can be obtained

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534 readers on these pages from Norway in the four years since 2012 got me curious.

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Norway Institute of Public Health is charged to prioritize healthcare for pain.

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Impressive! Very smart.

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“Chronic pain affects about 30 per cent of the adult Norwegian population.”

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In Denmark, “chronic pain patients had four to five times 

more in-patient days in hospital than the general population.”

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Cosmetic breast implants one in five have nerve pain for life.

Implants must be replaced every 10 to 15 years.

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Surprise note from Irish physician on Norway- see below.

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Pain is the most common reason people see a physician. Pain is the most common cause of long term sick leave and disability in Norway, and likely in every first world country. Without doubt every investment in returning people to productive health relieves the burden on the entire country.

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The most common method of treatment is analgesic drugs, and, I would add, the most cost effective.

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Pain is more common in females than males. Cosmetic breast surgery is the most common gift to girls for high school graduation in America. It was of interest to find Norway’s statistics on that:

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In a Norwegian study of young, healthy women who had cosmetic breast surgery, 13 per cent reported spontaneous pain and 20 per cent reported pain when touched one year after surgery (23).” Ahhhh, but implants are a lifetime commitment and depending on style, must be replaced every 10 to 15 years.  Is pain compounded with each overlapping surgery? Scarring? Use of arms? What further issues arise once these women require breast cancer treatment? We know that after breast cancer treatment, chronic neuropathic pain affects between 20% and 50% of women. Obesity has been linked to chronic neuropathic pain developing after breast cancer surgery.


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. 13 per cent had pain after surgery

20 per cent one year later

7 per cent more than they did immediately following surgery –

Is risk compounded when replaced every 10 to 15 years for the next 70 years?

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One in five, 20 per cent with chronic lifelong nerve pain!

Insanity

How can they know? Show them prior to surgery.

 Informed consent: view a video interview of girls who developed nerve pain.

Can it be prevented? Or treat early?

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This is neuropathic pain, the hardest to treat. Miserable.

Light touch elicits intense pain.

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We all routinely underestimate risk of surgery. For true informed consent, it would be essential to show a video interview of girls with postoperative neuropathic pain, explaining the financial cost of chronic neuropathic pain the rest of their lives, how it affects use of the arms and ability to work, how many times they must see an MD every year for pills, how it may get worse over time, what type of pills are required – this educates the surgeons too on how to diagnose and treat nerve pain with sequellae of depression, anxiety, insomnia, and how it affects everyone in their family. Everyone suffers. Many are disabled and agitated by this intense nerve pain.

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How does stress and fear affect risk of cancer and other serious medical diseases?

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We know with rodents, from John Liebeskind’s research with an Israeli team at UCLA in the mid 70’s, pain profoundly increases spread of cancer resulting in quicker death from metastases. Pain kills. He lectured nationwide on this. I posted on his message just weeks ago, December 27. “Pain kills. A malefic force.”  “…pain can accelerate the growth of tumors and increase mortality after tumor challenge.”

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John C. Liebeskind, 1935 – 1997, distinguished scholar and researcher, past president of the American Pain Society, had the radical idea that pain can affect your health.

 

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Twenty percent! Girls don’t know. How could they?

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Does cosmetic breast enlargement at such young age

increase

potential risk of  tumorigenesis, invasiveness, metastasis?

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Trauma (surgery) activates microglia lifelong. Glia never return to baseline.

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Microglia produce inflammatory cytokines –  inflammation.

Inflammation underlies almost all known disease.

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Does breast surgery, any surgery, increase risk of other known disease?

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What does inflammation do to endometriosis and autoimmune risks in this population?

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These are purely speculative thoughts. We cannot know until it is studied longitudinally and prospectively – if ever. Large breasts are very trendy. Obesity is very common; alas it is also pro-inflammatory.

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Postsurgical sequaellae can be extremely challenging. I will try to post two case reports in the near future. They are complex, enlightening, tangled, difficult to diagnose, post-surgical cases. The senior chief of surgery at Mayo Clinic had only seen two prior cases like it in this man who had laparoscopic prostate surgery many years before. Surgical sequaellae cannot be predicted. Large scale surgery in girls for cosmetic reasons have unexpected consequences. What is their cost decades from now?

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Norway Institute of Public Health has very nice data on drugs used, graphed vs time for men and women.  

 

Chronic pain in children and adolescents

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The incidence of chronic pain in children and adolescents is poorly mapped in Norway, but the consumption of analgesics and figures from other countries suggest that chronic pain is also common in adolescence (8). In the Health Interview Survey of 2005, parents reported that 6 per cent of children aged 6-10 years and 12 per cent of adolescents aged 11-15 years had chronic pain symptoms.

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A study of 12-15 year olds in South and North Trøndelag shows that 17 per cent suffered regularly from headaches, abdominal pain, back pain or pain in arms / legs (9). Consumption of analgesic drugs among Norwegian 15-16 year olds is high and has risen considerably since 2001 (10).

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Treatment

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Pain is probably the most common reason for patients to seek health care (26). A Swedish study found that 28 per cent of patients in general practice had one or more medically-defined pain conditions (27) – (my patients have at least 3 or 4). Corresponding figures are found in Denmark (28), where it has also been shown that chronic pain patients had four to five times more in-patient days in hospital than the general population (29). Corresponding figures for Norwegian conditions are unavailable.

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Irish physician comments on Norway

just minutes before writing about Norway! sweet coincidence. He posted on a case report I wrote in 2010 on Complex Regional Pain Syndrome (CRPS) and low dose naltrexone, (LDN).

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Dr Edmond O`Flaherty

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I am a primary care physician in Ireland. I have been prescribing LDN for 9 years and it has utterly changed the lives of hundreds of people. The main conditions I see are fibromyalgia, chronic pain, MS, various cancers, Crohns/UC, chronic fatigue/ME, several other auto-immune diseases and one case of Interstitial Cystitis where a 30-year woman had “a fire in her bladder 24 hours a day” and who was due to have a cystectomy (bladder replaced by a plastic bag!) a month later than when she came to me by chance and soon became well.

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TV2 in Norway made a film about LDN in 2013 which was seen by 10 % of the population. The number using it there went from 300 to 15,000 in a few months. It is now on the website of http://www.lowdosenaltrexone.org in America and I was the only doctor outside Norway who was involved. I agreed to partake if they subtitled it in English which they did.

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Yes. Opioids cause pain. Naltexone relieves, and often resolves pain.

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My comment:

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Based on the work posted on these pages, RSDS.org sent scientists and specialists to my office in 2010. Over two days I introduced them to eight of my patients with years of intractable chronic pain, all of whom responded to low dose naltrexone, four of whom required treatment only one month with sustained pain relief   for years! RSDS is now funding a study on LDN for CRPS at Stanford.

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Norway has well known large cities, UNESCO heritage sites and this absolutely gorgeous small seaport village Reine on an island in the Lofoten archipelago, above the Arctic Circle. It was “selected as the most beautiful village in Norway by the largest weekly magazine in Norway (Allers) in the late 1970’s” and is visited by many thousands annually. “Lofoten is known for a distinctive scenery with dramatic mountains and peaks, open sea and sheltered bays, beaches and untouched lands. Though lying within the Arctic Circle, the archipelago experiences one of the world’s largest elevated temperature anomalies relative to its high latitude. Lowest temperature ranges from 28.4 to 35.6 degrees F.  The warmest recording in Svolvær is 30.4 °C (87 °F).

 

 

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Sequoia wildflower

 

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The material on this site is for informational purposes only.

It is not a substitute for medical advice,

diagnosis or treatment provided by a qualified health care provider.

Relevant comments are welcome.

If any questions, please call the office to schedule an appointment.

This site is not email for personal questions.

~~~~~

For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Please be aware any advertising on this free website is

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Dystonia with CRPS – Intrathecal Baclofen Training Needed


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People with Complex Regional Pain Syndrome (CRPS) may develop dystonia, which is a twisting, perhaps crushing, movement of the hands and feet, spine, muscles. That is called dystonia and there is a specific treatment: Baclofen given into the spinal fluid.

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All too often, people with CRPS encounter pain specialists who have little or no experience with CRPS, but they have been trained to do procedures: blocks, pumps, spinal cord stimulators. Doctors need to be trained how to diagnose dystonia and when to use a different type of pump.

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CRPS is different, and I suspect many doctors must not see enough cases to become familiar. I would plead for special education to train physicians — especially surgeons because trauma or surgery may trigger onset of this poorly understood syndrome. But we must train all PA’s, NP’s, PT’s, RN’s, pharmacists, all healthcare providers about CRPS.  For some, CRPS may be a life ending pain, and deserves early diagnosis and better treatment.

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There should be special centers for treatment of CRPS where patients are more likely to get best care and where research can be done.

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Treatment must be better than what I saw yesterday in a new patient who has been needlessly disabled for five years with crippling dystonia.

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Dystonia is treatable but was not diagnosed, despite many interventions, pumps, stims, blocks, repeated blocks, by teams of pain specialists and rehabilitation centers in Southern California and Georgia. Crippling dystonia was not recognized.

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Without centers for treatment of CRPS,

too many will not get the care needed to return to life.

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DYSTONIA EDUCATION NEEDED

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INTRATHECAL PUMPS

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Dystonia may occur in those with CRPS.

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I don’t follow the literature on pumps, but I have not seen anesthesia pain specialists or neurosurgeons doing intrathecal (IT) pumps since I left MD Anderson Cancer Center in 1994.

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Training to diagnose and treat dystonia should be in medical education programs, especially the interdisciplinary field of pain – a field that should not be left to the interventionists.

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The only treatment for the crippling, twisting movement disorder called dystonia is intrathecal baclofen, not oral. Baclofen must be pumped into the spinal fluid.

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I told my patient the diagnosis on the telephone before I saw him. Next, there is the fight to get insurance to allow referral to the neurosurgeon to co-manage that part of his care. We cannot say if he could have been back to work five years ago, only that twisting and crushing hands and feet can cause an agony on top of the pervasive burning.

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The gift of human life from better research and training in treatment of CRPS would be the best thing for productivity, health, and well being.

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Support better health care in this country so people don’t have to be disabled for decades with treatable conditions.

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And vote for your congressperson to support compounding pharmacies that are invaluable.

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It is an beyond belief that pain management is taught in only 3% of medical schools in 2016. We don’t need training in opioids. We need training in this vast field in every medical school. I’ll bet returning veterans have more CRPS than any other group. How many go unrecognized? How many doctors know what allodynia is?

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The material on this site is for informational purposes only.
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It is not legal for me to provide medical advice without an examination.

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It is not a substitute for medical advice, diagnosis or treatment provided

by a qualified health care provider.

~~
This site is not for email and not for appointments.

If you wish an appointment, please telephone the office to schedule.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Bisphosphonates for Pain – Back Pain, CRPS Pain. Have You Received Pamidronate or Other IV Bisphosphonate for Pain?


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Bisphosphonates have been used for treatment of pain.

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I have reviewed a few studies on pamidronate infusions for pain,  below.

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Based on these small studies, there is a growing rationale for use of I.V. pamidronate in the setting of selected chronic intractable pain syndromes.

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Have you received IV Pamidronate or Reclast or any bisphosphonate

for treatment of pain caused by any condition?

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Bisphosphonates are effective for reducing bone loss and, separate from that mechanism, they have been used to reduce pain in persons with various conditions including Complex Regional Pain Syndrome, ankylosing spondylitis, rheumatoid arthritis, chronic back pain, and other conditions.

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After you vote, if you wish to see results, click on the words “View results.” You do not need to sign in or give your email. Simply view results.

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If you have any experience with bisphosphonates even if for osteoporosis, please comment below. Do you know which academic centers are giving IV bisphosphonates for pain?

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The mechanism of pain relief is not clear and there are no standardized protocols for the use of bisphosphonates for pain, but relief of pain is believed to be separate from mechanisms related to bone.

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Many patients have no other options for treatment. There are no large randomized controlled studies – where is NIH funding for pain?

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Many medical treatments do not work for some patients with Complex Regional Pain Syndrome or for chronic low back pain. When all else has failed, pamidronate may be given IV, often in a series of infusions that take up to four hours. There may be some flu-like symptoms for 1 to 3 days after.

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For reasons unknown to us, Complex Regional Pain Syndrome is often associated with bone loss in the area of pain. It is more marked and prolonged than in immobilized trauma patients.

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What dose should be used, how often should it be given? Few studies have been published.

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MEDICATIONS for OSTEOPOROSIS

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Bisphosphonate therapy is commonly used for diseases of bone such as osteoporosis or Paget’s Disease, multiple myeloma, bone metastasis, osteogenesis imperfecta, fibrous dysplasia. For example alendronate (Fosamax) or residronate (Actonel) tablets,  pamidronate infusions,  or others.  Zoledronic acid (Reclast) is given IV, usually only once each year. One form of ibandronate (Boniva) is also given IV, usually every 3 months.

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Other medications that are not bisphosphonates are used for osteoporosis such as calcitonin-salmon (Miacalcin) SC or IM injections, Forteo (rhPTH ) SC injections, or estrogen.

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MECHANISM of BISPHOSPHONATES

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Bisphosphonates slow the rate of bone loss, they do not actually build bone. Bone requires a balance of osteoblasts that form new bone, and osteoclasts that resorb bone. Osteoporosis occurs with age and especially with loss of estrogen that dramatically increases loss of bone. Other factors that lead to bone loss are lack of exercise, hormonal, nutritional and genetic predispositions.

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RISKS of OSTEOPOROSIS

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Some of the worst pain I have seen in my career is pain due to fractures of fragile osteoporotic bones. It may be impossible to treat. With osteoporosis, you may simply roll over in bed and 7 rib fractures occur. One woman developed hundreds of fractures throughout her pelvis and was bedridden for years after a very minor incident. Bone stimulators did not help and she could not walk or stand without help. Years later there was a 1-1/2 inch gap between the fractures in her pelvis and of course being inactive and bedridden can only make osteoporosis worse.

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RISK of MEDICATION for OSTEOPOROSIS

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Osteoporosis is more dangerous by far than any medication used to treat it. As with any drug, the benefit must outweigh side effects. Bisphosphonates increase bone thickness and reduce risk of fractures. Osteoporosis medications causes less than 1% risk of bone fractures. Fractures from the medications may be seen in the midshaft of the femur which is the mid thigh; and they may cause osteonecrosis of the TMJ, the jaw bone. Serious problems with bone healing after dental surgery may occur in those who take bisphosphonates. But the risk of osteoporosis is far greater than this small risk.

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Non-bisphosphonates also have dangers: Calcitonin may increase risk of cancer. PTH is the only one that can actually build bone – an anabolic agent that induces bone formation, not just prevent resorption of bone, but abrupt termination leads to rapid loss of bone density. Estrogen increases risk of clotting, thromboembolism that is a risk for stroke.

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Neridronate is a new bisphosphonate available so far only in Europe the last few years. They are making claims that a series of neridronate infusions can reduce pain 100% in persons with Complex Regional Pain Syndrome. That seems highly unlikely:  100% effective? Really? Oh, and so far no reports of necrosis of bone. But it has not been available as long as pamidronate, so it may be years before we get a better assessment of this drug that is confirmed by other laboratories.

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PUBLICATIONS

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Dr. Pappagallo published three of the studies below. He is one of the foremost scientist-pain specialists in the world.

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A pilot trial of intravenous pamidronate for chronic low back pain

PAIN, Volume 155, Issue 1 , Pages 108-117, January 2014,  Pappagallo et al, found no serious adverse events.

They tested four groups of 11 subjects (7 active, 4 placebo) at differing doses. They conclude:

i.v. pamidronate, administered as two 90 mg infusions four weeks apart, decreased pain intensity for 6 months in subjects with CLBP.

[Pain was decreased by > 4 points. They showed no relationship between bone density and analgesic response, but did find a relationship between PTH, vitamin D status and pain response.]

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Bisphosphonates are known to have significant analgesic activity in addition to their well-characterized role in inhibiting bone resorption. For example, pamidronate (Aredia®, Novartis), an aminobisphosphonate, demonstrates clinically significant pain relief when administered intravenously for the treatment of Paget’s disease, metastatic breast cancer and osteolytic lesions of multiple myeloma [5], [24], [51]. In addition, i.v. pamidronate has been shown to have analgesic activity in a wide variety of painful conditions, including complex regional pain syndrome [12], [44], [53], fibrous dysplasia [10], recurrent multifocal osteomyelitis [22], [35], ankylosing spondylitis [33], rheumatoid arthritis [31], and others (for review, see [49]). The mechanism(s) of this analgesic effect is not fully known, but antinociceptive effects of pamidronate and other bisphosphonates have been reported in animal models of pain [7], [8], [25], [52]. Inhibition of osteoclast proton secretion and other cellular and molecular mechanisms may contribute to the analgesic effect [37], [54].

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The molecular mechanisms of pamidronate’s analgesic effects are not fully understood. Bisphosphonates are known to inhibit the activity and/or cause apoptosis of osteoclasts [20], [46], which remodel bone by creating an acidic microenvironment via the release of protons through vacuolar H+-ATPase [6], [45]. Osteoclast-induced high concentrations of protons may activate acid-sensing ion channels and transient receptor potential vanilloid type 1 channels expressed by small nerve fibers involved in pain signal transmission [37], [42], [54]. Osteoclasts appear to have a role in inflammatory pain adjacent to bone and in the hyperalgesia observed in type IX collagen-deficient mice [2], [37]. Of interest, inhibition of osteoclasts by bisphosphonates in a rat model of degenerative joint disease has recently been found to prevent subchondral bone resorption and cartilage loss, and decrease pain [50]. Clinical findings may also suggest a role for subchondral bone changes in the early development of painful osteoarthritis [13], [36]. Furthermore, the anatomical core structure of the spine is made of bone tissue, and immunohistochemical studies have revealed the presence of a widespread network of peptidergic small sensory fibers throughout the bone marrow, mineralized bone, and periosteum [28], [32]. Thus it is conceivable that: a) nonspecific low back pain (associated with degenerative disk disease or spondylotic disease as in our study population) may be related to sensitization of bone nociceptors, plausibly in the context of subchondral bone resorption (eg, at the vertebral endplates and/or facet joints) and b) inhibition of subchondral osteoclasts (and possibly of other phagocytic or inflammatory bone resident cells) by i.v. pamidronate might be clinically relevant to the treatment of CLBP.

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The responder rate for pamidronate 180 mg increased from 50% at 24 hours after the second infusion to 100% at month 2; the 100% responder rate was maintained at all subsequent time points. [There were 7 patients in each group of this small study.]

(Fig. 3) illustrates that all subjects receiving 180 mg pamidronate had at least 50% pain relief at both 3 and 6 months postinfusion, and approximately 80% of subjects receiving 180 mg pamidronate had 100% pain relief at 6 months.

Fig. 3. Continuous responder analysis. Blue solid line, placebo; red dashed line, 30 mg pamidronate; green dashed/dotted line, 60 mg pamidronate; brown dashed line, 90 mg pamidronate; purple dashed/dotted line, 180 mg pamidronate.

 

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Pamidronate treatment in rheumatology practice: a comprehensive review

Clinical Rheumatology, Volume 28, Issue 12, pp 1359-1364, December 2009, Slobodin et al. from Israel.

The efficacy of pamidronate in patients with spondyloarthropathies; synovitis, acne, pustulosis, hyperostosis, and osteitis syndrome; hypertrophic osteoarthropathy; osteoporotic vertebral fractures; chronic back pain due to disk disease or spinal stenosis; Charcot arthropathy; transient osteoporosis; and complex regional pain syndrome-I, has been demonstrated in more than 40 reports, the majority of which, however, were not controlled studies. In some of reviewed conditions, aside from providing analgesic relief, pamidronate may also have disease-modifying properties. While used in different doses in a variety of rheumatic disorders, pamidronate was generally reported to be well tolerated with an overall good safety profile. Pamidronate may represent an effective and safe choice for a spectrum of rheumatic patients, suffering from intractable musculoskeletal pain, unresponsive to traditionally recommended therapies. Large randomized, controlled studies examining the efficacy of pamidronate in the rheumatic conditions are urgently needed.

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Complex regional pain syndrome (CRPS/RSD) and neuropathic pain: role of intravenous bisphosphonates as analgesics. ScientificWorldJournal. 2008;8:229–236Yanow J, Pappagallo M, Pillai L.  They review multiple studies for pain of CRPS.

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Efficacy of pamidronate in complex regional pain syndrome type I. Pain Med. 2004;5:276–280, Robinson JN, Sandom J, Chapman PT from New Zealand.

Pamidronate 60 mg iv was given only one time to 14 patients, 13 placebo controls.

Overall improvements in pain score, patient’s global assessment of disease severity score, and physical function (SF-36) score were noted in the pamidronate group at 3 months, and improvements in role physical (SF-36) score were noted at 1 and 3 months. There was variability in pamidronate response among individuals. CONCLUSIONS: Pamidronate may be a useful treatment option in the management of patients with CRPS Type I. Although treatment response was variable, the majority of patients improved.

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Treatment of chronic mechanical spinal pain with intravenous pamidronate: a review of medical records. J Pain Symptom Manage. 2003;26:678–683, Pappagallo M, Breuer B, Schneider A, Sperber K.

[They] reviewed the charts of 25 patients who had experienced disabling spinal pain for several years, and whom we treated with [iv] pamidronate. None had a history of osteoporotic vertebral fractures or metastatic disease. Pain rating scores decreased in 91% of patients: on a 0–10 numeric rating scale, the mean pain change was 3.6 points and mean percentage change was 41% (P <0.0001).

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Treatment of severe, recalcitrant reflex sympathetic dystrophy: assessment of efficacy and safety of the second generation bisphosphonate pamidronate. Clin Rheumatol. 1997;16:51–56, Cortet B, et al. from France infused 14 patients 1 to 3 days, followed 3 months and in one case for 9 months. “results suggest an efficacy” and they recommended double blind placebo controlled studies.

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The material on this site is for informational purposes only.

It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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Please understand that it is illegal for me to give medical advice

without seeing you in office for history and examination.

I cannot respond to your medical questions unless you schedule an evaluation.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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PEA Palmitoylethanolamide – “Glia & Mast Cells as Target, An Anti-Inflammatory & Neuroprotective Lipid Mediator”


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Another oustanding article on palmitoylethanolamide “PEA.” I have seen profound results with it relieving intractable neuropathic pain in a woman with CRPS for years, and I suspect it may help Major Depressive Disorder but that remains to be tested.

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I need to add that opioids create pain. One mechanism by which that occurs is that opioids create pro-inflammatory cytokines, which creates more pain. Patients may see no response to essential pain relieving medications untill they taper off all opioids and allow the system to stabilize. Otherwise, they will have pain forever and it may increase.

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Glia and mast cells as targets for palmitoylethanolamide,

an anti-inflammatory and neuroprotective lipid mediator

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Authors  Skaper SD, Facci L, Giusti P.

Mol Neurobiol. 2013 Oct;48(2):340-52.  Epub 2013 Jun 28.

Abstract

Glia are key players in a number of nervous system disorders. Besides releasing glial and neuronal signaling molecules directed to cellular homeostasis, glia respond also to pro-inflammatory signals released from immune-related cells, with the mast cell being of particular interest. A proposed mast cell-glia communication may open new perspectives for designing therapies to target neuroinflammation by differentially modulating activation of non-neuronal cells normally controlling neuronal sensitization-both peripherally and centrally. Mast cells and glia possess endogenous homeostatic mechanisms/molecules that can be upregulated as a result of tissue damage or stimulation of inflammatory responses. Such molecules include the N-acylethanolamines, whose principal family members are the endocannabinoid N-arachidonoylethanolamine (anandamide), and its congeners N-stearoylethanolamine, N-oleoylethanolamine, and N-palmitoylethanolamine (PEA). A key role of PEA may be to maintain cellular homeostasis when faced with external stressors provoking, for example, inflammation: PEA is produced and hydrolyzed by microglia, it downmodulates mast cell activation, it increases in glutamate-treated neocortical neurons ex vivo and in injured cortex, and PEA levels increase in the spinal cord of mice with chronic relapsing experimental allergic encephalomyelitis. Applied exogenously, PEA has proven efficacious in mast cell-mediated experimental models of acute and neurogenic inflammation. This fatty acid amide possesses also neuroprotective effects, for example, in a model of spinal cord trauma, in a delayed post-glutamate paradigm of excitotoxic death, and against amyloid β-peptide-induced learning and memory impairment in mice. These actions may be mediated by PEA acting through “receptor pleiotropism,” i.e., both direct and indirect interactions of PEA with different receptor targets, e.g., cannabinoid CB2 and peroxisome proliferator-activated receptor-alpha.

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The material on this site is for informational purposes only.

It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Treatment for Pain Could Last Months: Botox & Tetanus Chimera Injection


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Professor Bazbek Davletov now at Sheffield University, UK, reports his research that is featured on the cover of the October 2013 journal Bioconjugate Chemistry. He hopes the drug will cost around £1,000 a year, making it cheap enough for use on the NHS. It is authored by a 22-person team from 11 research institutes, including Lincoln University UK based Dr Enrico Ferrari.

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Dr Ferrari joined the School of Life Sciences in October last year from the Medical Research Council’s Laboratory of Molecular Biology in Cambridge, where he took part in the development of a new way of joining and rebuilding molecules in the research group of Professor Bazbek Davletov who was then at the MRC.

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Taking components of clostridium botulinum and clostridium tetani neurotoxins – known as Botox and tetanus toxin – they re-joined the molecule proteins using a ‘protein stapling’ technology targeting central neurons without unwanted toxic effects.

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Science Daily announcement:

‘Chimera’ Protein Could Lead to Drug Treatments for Chronic Pain

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Lincoln University, UK, heralds this promising discovery:

Scientists synthesise new ‘chimera’ protein which could herald future drug treatments for chronic pain

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“Scientists have manufactured a new bio-therapeutic molecule that could be used to treat neurological disorders such as chronic pain and epilepsy.”

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The molecule was able to alleviate hypersensitivity to inflammatory pain.

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“Dr Ferrari, who is one of the lead authors of the study, said: “The toxins were split into parts so they were unable to function. Then later they were reassembled using a ‘zipping’ system so they can operate in a safe way. The re-engineered chimera toxin has very similar characteristics to Botox and is still able to block neurotransmission release, but the paralytic effect is a lot less. We then added a tetanus molecule which targets the chimera to where the pain signals travel towards the central nervous system.””

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“Dr Ferrari added: “Many painkillers relieve the pain temporarily and have various side effects. The selling point of this molecule is that the pain relief could last up to seven months….””

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The material on this site is for informational purposes only.

It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

~~~~~

Please understand that it is not legal for me

to give medical advice without a consultation.

If you wish an appointment, please telephone my office.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Complex Regional Pain Syndrome – Review of Inflammation & Meta-analysis


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Neurology, the journal of the Academy of Neurology, has published “Inflammation in Complex Regional Pain Syndrome, a systematic review and meta-analysis” on July 1, 2013.

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The study was supported by grants from the Australian National Health and Medical Research Council, the Canadian Institute of Health Research, the Dutch consortium on CRPS and the Dutch Ministry of Economic Affairs.

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They found “a proinflammatory state in blood, blister fluid, and CSF.” Profiles differed in acute and chronic cases.

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Levels of neuropeptides in blood and blister fluids were not higher in CRPS than in controls.

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The inflammatory profile reflected a generic chronic pain state. There was no signature specific to CRPS. Chronic pain is associated with higher levels of proinflammatory activity.

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Acute cases did differ from chronic. But affected limbs did not show higher levels of inflammation than limbs that were not affected.

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Of interest, they found significant variability in concentrations of inflammatory factors which may suggest the data reflects methodological errors. Or it may suggest that CRPS is not a distinct disorder but is a collection of disorders that appear similar clinically, or the inflammatory response is not consistent, or that important clinical subgroups exist, for example hot vs cold CRPS or variations that present with significant autonomic disorders or systemic involvement.

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They noted a recent review of treatments that found little evidence that prednisolone improves symptoms of CRPS. And they note conflicting evidence for free-radical scavengers (dimethyl sulfoxide and N-acetylcysteine). They point out the latter trials were small and of mixed quality, however I have personally seen patients who respond to those treatments.

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They recommended formal, large, high quality studies to assess the efficacy of cytokine inhibitors (TNFα inhibitors) or immunosuppressive medication. They recommended more in vivo work on the immunomodulatory effects of analgesic medications such as morphine that has, in vitro, been shown to decrease the anti-inflammatory cytokine IL-10 and increase the proinflammatory IL-12 thus predisposing to more pain.

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The material on this site is for informational purposes only.

It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

~~~~~

Please understand that it is not legal for me

to give medical advice without a consultation.

If you wish an appointment, please telephone my office.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

.

PeaPure – Palmitoylethanolamide for Nerve Pain or Migraine


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PeaPure is a glial modulator. It is available in Italy and the Netherlands as a food supplement and has been studied in multicenter clinical trials in Europe for several years. It is well tolerated with no side effects and is very helpful for neuropathic pain, headache, and osteoarthritis. It is anti-inflammatory and neuroprotective.

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Because it inhibits astrocyte activation and the over-expression of pro-inflammatory molecules and signals, it is being investigated in Alzheimer’s Disease.

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The mechanism of action of PEA was discovered in 1993 by Nobel laureate Rita Levi-Montalcini in her work on nerve growth factors. She found it is involved in metabolism of mast cells and published a series of papers on its self-healing effect of the body in response to inflammation and pain. Two recent publications from Jan M Keppel Hesselink, MD, PhD, and his colleagues at the Institute for Neuropathic Pain, Amsterdam, The Netherlands, describe case reports, one of which is the case of a woman with CRPS.

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The purpose of this post is to clarify dosing of PeaPure and how to take it for a sudden flare of pain. My apologies for failing to recall the source of these instructions which I believe was from the manufacturer and from here and here. The latter includes an excellent review of its mechanism.

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Description of PeaPure® 400 mg capsules
PeaPure® is a food supplement based on a natural and fatty-acid like compound.
The substance palmitoylethanolamide (PEA) is a physiologically active molecule that the body produces naturally.
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What the user should know prior to ingestion:
•    There are no known significant side effects.
•    PeaPure® can be taken simultaneously with other medicine. In case of doubt, it is recommended to first consult your doctor or a pharmacist.
•    Use during pregnancy is NOT recommended.
•    PeaPure® does not contain sugar, yeast, allergens, sorbitol, magnesium stearate, povidone or other ingredients.

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Dosage and administration – please refer to the manufacturer.

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UPDATE SEPTEMBER 2014

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It is with a heavy heart that I report this news:

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Palmitoylethanolamide is

now available only from the Netherlands,

sold as PeaPure, a food supplement.

  It is no longer able to be imported by a pharmacy, but we are hoping

that may change if we can interest a supplement manufacturer to make it available for the US.

Patent rights, attorneys are far beyond the resources of my local pharmacy.

 

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I have published this year, 2014, on the treatment of

vulvodynia and proctodynia with PeaPure and a topical cream.

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There are no studies to show us how often it may relieve nerve pain, but it is astonishing when it works. No toxicity, no side effects. Your brain makes it, plants make it. There is a growing literature on it and I have posted on some of its mechanisms. And in particular, its Anti-inflammatory, Analgesic, Neuroprotective Mechanisms.

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The material on this site is for informational purposes only, and is not a substitute for

medical advice, diagnosis or treatment provided by a qualified health care provider.

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Please understand that it is not legal for me to give medical advice without a consultation.

If you wish an appointment, please telephone my office or contact your local psychiatrist.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Spinal Cord Stimulators


For some reason my two browsers do not show the comments sent to this post, below, and therefore I am posting them now. I would emphasize the last comment by a very experienced nurse who has seen many complications of spinal cord stimulators. For persons with CRPS/RSD, I have seen many others. The saddest are those who had stimulators inserted and now the pain of CRPS is worst at the site of the “stim.” If the leads are ripped out from under the skin, the track of those leads may forever be the worst pain on the body.

10 Responses to “RSD – CRPS – Complex Regional Pain Syndrome – Long Distance Patients”

  1. Robyn H Says:
    08/04/2010 at 8:16 am  
    I broke my hip and wrist during a fall at a local skating rink in my hometown in Georgia. The hip healed fine after surgery and two weeks later, surgery was performed on my right wrist. Immediately after surgery, the pain was different. I was soon diagnosed with RSD and put on several medications and therapy three times a week. After many weeks of oxycontin, oxycodone, neurotin, topamax, klonopin, robaxin and paxil and four nerve blocks (SGB), it was suggested I receive the spinal cord stimulator. Through research on the internet, I found Jim Broatch with the RSDSA organizaton who advised me there were other alternatives in treating RSD. I discovered Dr. Nancy Sajben in San Diego. She has been treating RSD with oral ketamine and naltrexone. I saw Dr. Sajben in her office July 19th and began treatment. Since beginning treatment, I have been able to go off the opiods and have had a 70% improvement in my range of movement of fingers and arm and decreased pain levels to the extent that I can now tolerate physical therapy. I have had no “flare ups” since beginning treatment. Dr. Sajben has changed my life for the better and given me hope for the future. Thank you, Dr. Sajben!

    • Nancy Sajben MD Says:
      08/04/2010 at 6:00 pm   Remarkably, in one and one-half days, she no longer needed high dose oxycodone which she decreased 95% on her own as pain was 40% better. That was before ketamine reached a dose where it began to have an effect and before naltrexone was prescribed. The later addition of those two helped even more. By the start of week two, she was able to discontinue the last 5% of oxycodone and is 70% better off opioids. She was started on a few other medications than mentioned in her comments: rational polypharmacy. Since January, she was unable to move her fingers, unable to write or pick up anything with the right hand. Less than ten days after we started treatment, the fingers had regained modest motion. She could hold a pen, write, pick things up with the fingers, fold laundry, pack luggage, and best of all her seven year old daughter said: “Mommy, I can hold your hand for real now.” Allodynia and hypersensitivity of the hand is so much better that she is likely to be able now to make progress in physical and occupational therapy. It was too painful prior to her visit. There has not been one flare of CRPS since day one on July 19, 2010, despite using the hand in ways not possible for seven months.

  2. Lori Morris Says:
    01/11/2011 at 6:45 pm   I would first like to thank you for your specialization in CRPS. My husband was diagnosed with CRPS in March 2010. He suffers in his lower left extremity (left foot/ankle) with all the signs of CRPS. He has gone through extensive pain management since that time. He has used oral meds, morphine, oxycontin, and now methadone, and also takes lyrica and nortriptylene along with lortab as needed. He has had no relief with these meds. He has had one nerve block with no relief, so a second block was not attempted. On Friday Jan. 7th the SCS trial was done and today Jan. 10th removed due to it causing pain in his lower back and side. The jolting the SCS caused in these areas could not be over come with reprogramming the SCS. Today, his pain management doctor discussed the Drug Delivery Therapy, which is not crazy about doing and after reading your information regarding SCS and Pumps I too am having second thoughts. However, the doctor did mention that there were 2 clinics that specialized in CRPS. One at John Hopkins and the other at UCLA. His doctor recommends the UCLA clinic and that is how I got to your page. I have been doing my research on CRPS since my husband was first diagnosed and am always looking for anything new in the medical field. I have read all your information regarding the Ketamine and Naltroxene treatments your patients have received and will be discussing these with his local pain management doctor. So, again I just want to thank you in advance for your specialization and your web page. Who knows, we just may meet some day.

    • Nancy Sajben MD Says:
      01/15/2011 at 6:17 pm   CRPS is unlike any other pain syndrome because it can be spontaneous or triggered by something very slight. Pain can involve the entire body. There is a high incidence of suicide. Despite that, there is a hope that it may be entirely reversible or, at least, put into remission. What a joy to see that happen and to share in the recovery!!!

  3. Traci Says:
    03/29/2011 at 6:01 am I posted on your main blog, but haven’t heard back. I know you wanted information regarding issues or problems with Spinal Cord Stimulators, so here is some information that you can add to your file. I can also be contacted for additional information because this issue continue to date.

    In one of your posts you asked for input from patients that currently have a SCS. I currently have a Medtronic SCS it was implanted early 2010 and I ended up having swelling in my Lt (affected) foot/ankle every time I would charge the “re-chargeable battery”. No one at Medtronic could figure out the issue. I turned into their “human lab rat”. After several months of this I was told to switch from a rechargeable battery to a non-rechargeable batter. Thus another operation… which I did. After this surgery (I have a paddle with 16 electrodes) all 8 electrodes on the Lt side that used to supply stimulation to my Lt foot/ankle now hit my pelvic area – thus I can no longer utilize these electrodes. And out of the 8 electrodes on the Rt 2 are providing stimulation to my Lt foot and the other 6 are hitting the wrong areas. In addition to this I have had continual instances where I am getting a very sharp pain/ sharp twinge (like a jolt) around where the electrodes area. When this happens if I turn off the SCS the pain immediately stops. I’ve been on a conference call with a Senior Engineer of Medtronic and a local Rep in person with me to do reprogramming… The Engineer only wanted to know if the electrodes were putting out stimulation. He didn’t want to know what the amperage was at before I could feel it or in what part of the body the stimulation was felt. These should have been critical pieces of information. All he wanted to state was that the electrodes were working. As for the Sharp Pain / Sharp Twinges that continue to occur in the electrode area their Senior Engineer has no idea what is causing this. He asked me to run an experiment the next time it happened – I did exactly what he wanted and reported back the findings. I have yet to hear back from Medtronic. They do not want to back up their product and they are not willing to admit that their is a problem. Although I have 2 doctors including a Neurosurgeon that feel there is some type of fault in their product or that it is faulty. Hopefully this gives you some additional information you were seeking. Please feel free to email me if you would like to discuss further. I am continuing my uphill battle with Medtronic.

    I have spoke with Medtronic as recently as yesterday and they can not explain the continual sharp pain/sharp twinge that I continue to get where the paddle that holds the electrodes is placed. The “Patient Relations Rep” that has been assigned to me, (at one point she tried to tell me she was from their “Legal Department” and she was later introduced by a team member as a “Patient Relations Representative”), doesn’t feel this is a big issue. She told me yesterday that this is “just medicine” and sometime they can get it right and other times it just doesn’t work out… The Senior Engineer at their company can not figure out what the problem is, so he just wants to reset the “INS”. I asked exactly what the “INS” was and the Patient Relations Rep couldn’t answer that question. I have already had my system reset numerous times (too many to count) and reprogrammed numerous times.

    The trial was aproximately $25,000; the hospital expenses alone and cost for the SCS implant were over $150,000 and the secondary surgery to replace the rechargeable battery with a non-rechargeable battery was aproximately $53,000. This is all for a system the now has 2 out of 16 electrodes that hit the correct area, creates an intermitent sharp pain/sharp twinge in the spinal area where the electrodes/paddle is placed, and they aren’t sure how to resolve this issue. But I was told yesterday that their system was working properly by their rep.

    • Nancy Sajben MD Says:
      04/01/2011 at 2:48 am  Traci, thank you for your comments and for placing your second comment in this section where others with CRPS may be more likely to see it.

      One of the simplest ways to respond to the issues you pose is to say that a renowned pain specialist colleague, trained in Anesthesia Pain at Harvard 40 years ago, does not put in spinal cord stimulators, does not recommend them and does not refer patients for them. He trained in how to use them when they came out, just as he trained for morphine pumps. He has never placed either in a patient.

      The common sense question is: Show us the data. Five year long term data with complications. Invasive procedures do have potential risks.

      The body tissue of a person with CRPS is very volatile, very different than any other condition I know. Any surgery, any procedure in that person is a risk not to be taken lightly. Just a needle stick for blood draw or vaccine can trigger CRPS.

      There is no question it is a big money maker. Several can be placed in many patients in a few hours. In no time at all, it has become an industry. And that kind of wealth can control the way pain management is practiced in this country. It doesn’t pay to do anything else. NIH doesn’t try. Show us the research.

      Nothing interests me more than the neuropharmacology approach I use for CRPS and “intractable” pain from the many conditions my patients have. I wish you lived nearby.

  4. Maureen Says:
    01/22/2012 at 5:57 am   
    I just had the scs implanted two weeks ago. I am getting that sharp pain and burning near the battery site. It happens with the scs on or off. I really am wishing I never got it. I feel that the small relief that I am getting is not worth it. Are you telling me that the leads can never come out and no MRI ever? I do believe they can be removed.

    • Nancy Sajben MD Says:
      01/24/2012 at 4:41 pm   
      I believe they can be removed, but they may become tethered to the spinal cord itself. I presume that may occur when they have been in for some time. I do not implant these, but one of the foremost anesthesiology pain specialist in the country, Harvard trained in pain management, will not put these in and will not refer patients for them.

    • Nancy Sajben MD Says:
      01/24/2012 at 4:43 pm   editAgain, specifically, if tethered to the spinal cord, or some other complication, they cannot be removed.

  5. Barb Fosdick Says:
    06/07/2012 at 11:25 pm   editI have been a surgerical nurse for 40 years and have seen many patients receive SCS…and many, many fail, or return to surgery for fractured electrode wires, misplaced wires, or infected battery pockets, besides complicated problems, or “lack of positive results, or battery revisions, or electrode repositionings.” Some patients have even developed spinal fluid leaks when the spinal dura layer has been torn during implanting the electrode wires, and they develop severe headaches, and have to return to surgery for the leak to be repaired. Many pain management doctors are convincing patients that this is a great way to treat their pain, and they find out in 2-6 months that they wish they never had agreed to it. Sure, there are some patients that get some relief, but this procedure has been pushed on the population of chronic pain patients, when they are at their worse condition, and willing to try anything….at any expense, and the companies and implanting doctors are getting the money. More patients need to learn the truth about these devices! Anomymous…. and never allowed them to put one of those things in me…but many tried!

RSD/CRPS, Multiple Sclerosis, LDN & Ketamine


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It is rare for me to see a patient who is not complex.

They have failed so many treatments for so many years before they call.

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This is the report of a lovely woman in her early 70’s with progressive Multiple Sclerosis for 30 years and paraplegia that has forced her to use an electric scooter the last 5 years, and power wheelchair the last 2o years. Because of total paralysis of the right lower limb, she fell and shattered her femur, the thigh bone, in August 2009. Tragically, and all too often, the surgeon failed to diagnose Complex Regional Pain Syndrome [CRPS], even failed to visit her in the hospital. CRPS increased the fatigue she had already had from Multiple Sclerosis.

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Thankfully a physical therapist suggested the diagnosis.

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Why is pain management not a required subject for physicians?

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I have written elsewhere that the American Pain Society discovered that our National Institute of Health, NIH, devotes less than half of 1% of their research dollar to pain research. Of 28 NIH institutes, none for pain, three for addiction. This will not change soon. The only hope is that RSDSA.org will succeed in collaborating with all pain organizations, groups with dystonia, chronic fatigue in order to give a voice and research dollar to advances.

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Before seeing me in September, she had 11 sympathetic blocks with no benefit.

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Does it make you wonder why 11 were done?

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How does insurance authorize 11 when 10 had no benefit? I have just learned that a doctor must indicate at least 50% relief before another will be authorized. That explains it.

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Then she was given opioids including tramadal and Butrans patch which rendered her a “zombie,” sedated, poor memory, unable to function. She tried 4 or 5 treatments of Calmare with no benefit but was advised she needed a clear neural pathway for it to work. That was not possible due to the Multiple Sclerosis.
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Lyrica caused severe edema. Gabapentin 1400 mg/day caused weight gain, increased her appetite  more than usual, but she remained on it. She craves sweets more than usual, at times uncontrollably. Perhaps it can be slowly tapered now. Advil 600 mg gave some benefit but caused ulcers that required Nexium.

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Since her initial visit a few weeks ago, she became 60% better during her two week stay.

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I will highlight only two of the new medications started.

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It may also be said that opioids are not the answer.

Opioids may perpetuate pain.
They may produce paradoxical pain or opioid induced hyperalgesia or windup.

They may block the effect of ketamine and other adjuvants that would otherwise lower pain.

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Of importance is that she was not able to tolerate clothing on her right lower limb for three years, not even a sheet, and now she is able to sleep through the night without pain for the first time in three years and able to wear a skirt. This allows her to go out with family to restaurants and even to enjoy shopping with her daughter. Her dose of ketamine is very small relative to most of my patients and she uses it only once or twice a day since most of the new medications have brought her pain down.

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At her first visit one month ago, she rated pain from 6 to 8 on a scale of 10, average 7/10. Now 60% better, ranging from zero to 7, average 4. Yes zero pain, sleeping through the night without pain and waking without pain. She had not been able to tolerate touch to the right thigh or foot and would pull her skirt above the thigh, removing her shoe.

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Now she indicates pain continues to improve.

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Of interest, despite an abundance of concern that low dose naltrexone [LDN] may flare her Multiple Sclerosis, we were easily able to increase the dose to triple what is usually called “LDN.” This did not flare her condition and may be one of the most effective medications she is taking for pain.

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What is LDN?

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The FDA has sanctioned its use in the USA only in doses of 50 to 400 mg for addiction to opioids and alcohol.

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Low dose naltrexone [LDN] is a fascinating medication. It has been used in low dose in persons with Multiple Sclerosis since 1985 when a Harvard trained neurologist in New York City, Dr. Bihari, first discovered that it relieved all disability in some patients with Multiple Sclerosis and prevented recurrent attacks. Since then, doctors in Scotland, where they have the highest incidence of Multiple Sclerosis, find that one of the earliest signs of recovery in this population is relief of neurogenic bladder. It is said that persons with Multiple Sclerosis must remain on LDN for 1.5 years before they might fully assess its value.

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 Multiple Sclerosis may be flared unless very small doses of LDN are used.

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Many with Mulitple Sclerosis cannot tolerate more than 2 or 3 mg, perhaps due to spasticity. There is a great deal of dogma on the web about its mechanism, dosing and timing for off label use. Use the search function on this site to review the prior discussions I posted on LDN, MS, CRPS.

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Naltrexone is a glial modulator.

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What’s that?!

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By serendipity, four years ago I discovered naltrexone in low dose may relieve chronic intractable pain. I had been using it for perhaps eight years in microgram doses but I found in milligram doses it is even more profound.

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The mechanism of naltrexone and a wee bit of glial research is discussed here. The Nobel Prize was awarded last year for the discovery that these glia are your innate immune system. They are profoundly important in many diseases including chronic pain, Major Depression, Multiple Sclerosis, Alzheimers, Parkinsons Disease, ALS, Autism. They produce inflammatory cytokines that lead to inflammation.

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Now that she has been home for two weeks, on a number of medications that I started, not just the ketamine and LDN, I hope she will comment on her experience and her progress since flying back to the east coast after her brief visit here.

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It is often essential to taper off opioids to allow other medication to work.

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I feel she was able to benefit from these low doses of medication because she tapered off all opioid medication prior to her visit, thus allowing her system to recover and respond to these medications. We will know more in the next few months as she slowly titrates up on some of the medications that were started.

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Next year on her return, we may be able to withdraw some of the medications depending on how well she is doing.

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Finally, ketamine does cause her to have brief side effects. Her husband likens the effect the same as half a glass of wine: “She’s really cute.” Thankfully, most people have no side effects and if they do, they rarely last more than 20 minutes.

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She sends an update below, 80 to 90% better. Hopefully this will continue to improve over the next months as she slowly increases the medication we started. And ketamine has an additive effect in some. It is anti-inflammatory.

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The material on this site is for informational purposes only.

It is not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider.

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Please understand that it is not legal for me to give medical advice without a consultation.

If you wish an appointment, please telephone my office or contact your local psychiatrist.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!

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Ketamine IV vs Nasal Spray or Sublingual


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Patients ask me to compare IV ketamine to other routes of administration such as intranasal or sublingual. No one has done comparisons. Even if they had, every person is different and may have several pain syndromes.

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I have outlined one case below. One disadvantage of IV ketamine is the cost and the need to schedule for an IV treatment with your physician often weeks in advance. For some, this may mean setting aside two weeks to travel and make other arrangements. The alternative is carrying this low cost medication in your pocket and using as needed to relieve pain when you have pain, or to prevent pain when you know your activity will flare it.

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Ketamine is an important medication for pain.  It is considered a third line choice for pain relief, but it is almost a first line choice for Complex Regional Pain Syndrome, CRPS  – the old term is RSD. And I prescribe it for other conditions that have been refractory to treatment. But, far more than any other pain syndrome, pain from CRPS can be flared by emotional stress or minor injury and it can spread to other areas.

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Ketamine is a short acting medication. It is both analgesic and anti-inflammatory.

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Opioids create pain; ketamine not only relieves pain, it also relieves inflammation. In fact, opioids may prevent ketamine from helping at all.

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A small number of pain specialists in the USA, most at university centers, provide IV ketamine for CRPS. Not all people respond. A lucky few may get months of pain relief, but may require monthly boosters, i.e. it may be a short acting medication only during the infusion or it may offer relief for weeks or months but not years. I do not believe anyone has published comparisons showing duration of effect.

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I view ketamine as a short acting medication that requires other combination medications to “clamp” the relief and prevent pain from recurring.

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Here is a case report posted a few years ago of my patient who had 8 months of relief from IV ketamine. It was given 24 hours/day for 5 days in May 2007, followed by four hour IV boosters two days every month. Unfortunately all ketamine stopped having any effect after 8 months. I then added multiple medications that were selected because of specific mechanisms — no opioids, no ketamine — and she has been pain free since December 2009 on a single drug.

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CASE REPORT

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Today was the 5th visit in the last two weeks with an out of state patient who has had CRPS since 1999. She also has sciatic neuropathy, chronic lumbar pain after 360 degree spinal fusion, shoulder pain, and two types of headache. Medications are now significantly helping all pain syndromes.

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Before seeing me, she had had a total of 9 infusions of IV ketamine most of them given at doses of 300mg/hr — a very high dose. She had no side effects from ketamine. One of those infusions was given for 6 days over 4 hours each day. She had failed a lidocaine infusion at high dose. A spinal cord stimulator was reprogrammed 10 times, but only made pain worse.

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I then started her on a combination of medications. With addition of the first new medication, she had 50% improvement in the first 24 to 36 hours, that lasted beyond the relief from nasal ketamine that was also started. Unfortunately, on day 8, she and another family member, came down with a virus that causes headache and severe vertigo. Nevertheless, all pain is markedly better.

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With ketamine she is able to reduce pain down to 1 on a scale of 10 for a few hours. Best of all she can carry it with her and use it as needed. She no longer needs to take two weeks out of her life to schedule IV ketamine infusions.

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It will take almost 3 months to slowly increase the other medications we started. Hopefully this combination will “clamp” the pain and prevent it from increasing so that she may become pain free without needing ketamine.

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After that, if she is able to become pain free, the plan is that we will then be able to slowly remove most of the new medications we started this week and still maintain relief of pain. I will see her again in the future.

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Sierra wildflowers

Click to embiggen

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The material on this site is for informational purposes only,

and is not a substitute for medical advice,

diagnosis or treatment provided by a qualified health care provider.

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Please understand that it is not legal for me to give medical advice without a consultation.

If you wish an appointment, please telephone my office.

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For My Home Page, click here: 

Welcome to my Weblog on Pain Management!

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RSD, Complex Regional Pain Syndrome – a case report


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Severe Pain for Three Years,

 80% better in 10 days

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“This has been life altering.”

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This is a very bright young woman who was an all state volleyball player until onset of Complex Regional Pain Syndrome three years ago in the right hand and wrist. It began after blood was drawn from the hand for a chemistry study and, one week later, the fingers turned black, lost blood flow, followed by emergency surgery for removal of a blood clot from the back of her hand. She woke after surgery, tearing the sheet off due to intense pain on light touch — that is called allodynia — and then developed severe edema from the hand to the shoulder.

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It was four excruciating weeks before the diagnosis of complex regional pain syndrome was made.

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CRPS or RSD is a diagnosis that every MD,

every surgeon, every ER doctor,

every psychiatrist and psychologist, every nurse and therapist should know how to diagnose.

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Because she was a minor, they would not do nerve blocks.

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She developed contractures of the fingers and hand,

was unable to move the fingers.

  A major university hospital diagnosed Munchausen Syndrome;

mom was diagnosed with Munchausen’s by proxy.

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This happens so often. This is 2012.

If it’s not the doctors,

it’s the insurance companies

creating roadblocks to diagnosis or treatment or both.

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Why is pain management not taught at medical schools?

Only 3% of schools today give 30 hours instruction in four years, Yale most recently.

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At a major university hospital two hours away, she failed to respond to 14 stellate and brachial plexus blocks. But the wound reopened by itself, the stitch fell out. The psychiatry department evaluated her after she was so drugged with methadone, she does not even recall the interview. They diagnosed Munchausen Syndrome. That changed everything. Relationship went sour. Distrust of MD’s began and was confirmed many times in many places along the northeastern corridor and Texas.

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That fall, she became a student at the university of her dreams. The diagnosis of CRPS was confirmed at their university medical center hospital where they wanted to continue the same blocks that had failed. Elsewhere, the chief of a renowned ivy league university pain service wanted to talk to her only about spinal cord stimulators, declined by the family.

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In May 2010, she qualified for an NIH study of neurotropin double blind 6 weeks on, 6 weeks placebo. Failed.

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She was seen by Dr. Schwartzman in Philadelphia October 2011, and sent from there to NYC to rule out neuroma dorsum right hand, negative.

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On Lyrica, she gained 20 lbs, then back to 130 lbs baseline when off of Lyrica. Intolerance to Morphine – hives, Duragesic – total body itching. Ambien – hallucinations, Lunesta – hyper. Benadryl helped somewhat. Detoxing from Nucynta – lips were bright red.

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Her weight dropped from 130 to 115. Many medications were trialed and failed. Marinol helps pain slightly and gives the best sleep in years, better appetite. It does cause anxiety, but she had not slept in three years, and it gives 4 to 6 hours of good sleep. She developed sharp bitemporal headaches. I advised headache is a side effect of Pristiq —- now thankfully discontinued and better.

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Since August 2011, she has had CRPS pain in the right leg, worse walking, weight bearing.  There is discoloration of the dorsum hand usually, at times along proximal forearm, recently at right foot and leg. She had edema up to the shoulder measuring 30 cm. Nails growth faster at the right hand, possibly less hair growth right hand. Temperature usually cooler on the right hand, at times at night the hand and foot become hotter. No change in sweating noted.

The first year, she had almost total loss of function in the hand with pain and contractures —and forced herself to move the fingers with OT and PT, then home exercise. She still has days when the fingers remain flexed, but 98% of the time there is full movement as she continually tries to use the hand/fingers to write and type. Nose may become ice cold and tingly since CRPS spread to right side of face and right lower limb. At times tingling fingers. She struggles with memory when pain is severe and with lack of sleep.

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Pain ranges 7 to 10, average 8. Edema was significant for one year, now comes and goes. Allodynia is present hands and feet, now a different scale than before when she could not even be in the car.

However, with weight bearing and walking, pain of the right lower limb became most intense.  She will be 21 in July, but on a bad day was unable to leave her bedroom to walk downstairs as pain was too severe. She would communicate with family by loudly calling or texting. It was unthinkable to make plans for the next week due to severe pain. She has osteoporosis with atrophy of the right upper limb, and has had color changes and edema of the hand.

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She lives in an eastern state inland, two hours away from the mid Atlantic seaboard and major medical center. She failed ketamine infusion at a major university medical center on the east coast. The cost and inconvenience was significant and the family did not know that ketamine may fail to have any effect if taking opioid analgesics. Once mom discovered that, she was able to wean off the opioid medication. Ultimately, after many more interventions, much later, in crisis, she did benefit from IV ketamine infusion, and was able to regain some movement of her fingers on the right hand, but there was no lasting relief. It was a struggle to obtain approval through her insurance.

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She has been spending a great deal of time in bed for months. Morning stiffness is widespread for one to two hours. Bending is difficult, feels as if “hit by a bus,” but she does stretching, moving, distraction and Yoga when able.

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Much better in 10 days

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Day one: pain of the entire right side, face, trunk, limbs, rated 7 to 10 on a scale of 10, average 8. She guards the dominant right hand and the signature is difficult. Atrophy of the right upper limb is present, nails longer on the right hand, dusky dark erythema and long jagged scar over the dorsum right hand, mild erythema of the right upper and right lower limbs.

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On the first day, in the office, she tried the first dose of ketamine nasal spray and after a repeat dose, she was puzzled, thinking to herself, then let us know she realized she was able to concentrate. A small dose is not enough to relieve severe pain, but even major depression can vanish at that dose. Two sprays relieved the brain fog of depression; pain was still 8 on a scale of 10. Blood pressure and pulse did not change before and after doses. She felt hopeful.

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In the next few days she was able to do the unthinkable: make plans with friends, walk 45 minutes, become active, and remain active in a way that had not been possible. She was far more active with much less pain.  Over the weekend, six days after she arrived, after we had sequentially added several new medications, she found the dosage of nasal and sublingual ketamine that worked for her. She has actually had times when she was pain free. As noted during prior ketamine infusions, she requires a far higher dose than most patients to achieve effect. The plan now is to use higher doses at home when time permits for best effect, and booster sprays of nasal ketamine as needed when away from home. She can carry it in her pocket. There is no need for ICU infusions and the fight to get insurance coverage for those stays.

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Of great significance, she has even made plans for the entire summer.

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More details of her case will be added, as time permits. For now, this page is here to allow the patient and family and others to send comments. She will continue slow titration of other medications that will take three months before reaching the target dose, before we can assess efficacy. Based on my experience treating chronic intractable neuropathic pain including CRPS, it is possible these medications will be able to stabilize and relieve pain without ketamine.

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See other case reports of treatment of CRPS here, here, and here.

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You can read some of the science of pain, glia and inflammation. Ketamine is significantly anti-inflammatory. Three of her new medications are glial modulators. Treatment of severe chronic pain usually involves rational polypharmacy, not one medication and not medication alone. It requires a holistic approach to heal: P.T., O.T., massage, cognitive behavioral therapy, guided imagery, visualization, positive thinking, remaining active, and other modalities that depend upon the underlying cause: physical, emotional, spiritual, and financial. The treatment for CRPS is not specific for that condition alone, but the gains can be possible with tremendous discipline, effort, single minded determination and the loving support of friends and family.

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Be cautious of spinal cord stimulators. Try everything else first.

They can create pain and scarring or tether the spinal cord.

Be proactive.

Remember that guidelines and strategies for diagnosis and treatment are outdated.

Support RSDSA.org if you can.

They support high quality pain research.

You can go directly to their site or donate to them (not me)

using the link at the top of my site here.

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Patients and doctors do not understand that opioids create pain.

A 2006 publication from Vanderbilt shows how much better pain can be to taper off.

The abstract:

Significant pain reduction in chronic pain patients after detoxification from high-dose opioids.

The article:

Significant pain reduction in chronic pain patients after detoxification from high-dose opioids.

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More on this young woman’s journey coming.

It’s been busy!

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The material on this site is for informational purposes only,

and is not a substitute for medical advice,

diagnosis or treatment provided by a qualified health care provider.

~

Please understand that it is not legal for me to give medical advice without a consultation.

If you wish an appointment, you will need to telephone my office.

~

~

For My Home Page, click here: 

Welcome to my Weblog on Pain Management!

.

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CRPS Two Years, Pain Free on Low Dose Naltrexone


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Girl with CRPS cold type two years, pain free on naltrexone 3 mg

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KR, 17 year old seen 11/4/11, with Complex Regional Pain Syndrome [CRPS] involving left lower limb from foot to hip, onset 3/09. She has nonspecific immune system abnormalities and many food sensitivities that caused leaky gut syndrome and 30 lb weight loss with certain foods causing the stomach to be rock hard and vomit. Elimination diet allowed her to regain 30 lbs.

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CRPS diagnosed February 2011, two years after first symptoms. The leg was cold, purple, mottled with allodynia. Pain had been 9 on scale of 10 for weeks prior to my visit when she was started on prednisone 60 mg x 1 week, 40 mg 1 week, and a few days on 20 mg, dropping her average pain to 4/10. Pain at my visit 11/4/11, ranged from 4 to 9, average 5, that was 40% better after prednisone. She takes a wheelchair to school and for distance, is able to walk short distances with cane, and without cane she concentrates walking slowly to avoid limp. She is very bright, highly motivated and described the limb as cold, aching, throbbing, shooting, stabbing, sharp, tender, burning, exhausting, tiring, miserable, unbearable. Pain severely interfered with walking, work, sleep, enjoyment of life, general activity, and relations with others. At rare times, the limb would jump. Numbness was present posteriorly off and on, especially when sitting, not present when standing.

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She had good health until mononucleosis at age 13 in October 2007. A few weeks later irritable bowel syndrome began (IBS-C), then CRPS began after injury March 2009, reinjury July 2009, then no problems until February 2011. The initial injury occurred when roughhousing with a friend, and her foot pulled her toes in a dorsiflexed position. The next day it was swollen and purple with bruising pain after the first injury. She was in a boot for several weeks. CRPS improved, she went to Peru climbing Machu Pichu when she was reinjured again. The foot was swollen, burning with allodynia. She was taken to a hospital in Chile where they wrapped the foot, advised to take Advil. Once home, she went to physical therapy. It resolved in 6 weeks.

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February 2011, fulfilling PE for high school, she tried out for swim team. Day two, she had pain from kicking in the water and was never able to get back into the water. She was in crutches the next 2.5 months and began physical therapy three times weekly since then. Pain began in the sole of the foot, but a slip and fall in the rain caused pain to spread to the hip. A flare in the past month caused pain much more in the left knee after prolonged sitting for tests. She now takes her wheelchair to school which she began to use early October 2011. She was in the chair consistently two weeks, now only as needed, and never uses it at home. She has used a cane since later April when she got off her crutches. In hot weather, the cold left lower limb sweats profusely. No hair changes. On prednisone, toes nails grow faster. She has used warm and cold compresses to relieve pain. She failed gabapentin when it caused her to be nonfunctional on 900 mg/day with no relief. Lyrica caused hives. Nortriptyline caused personality change, becoming very mean, an Atilla the Hun, opposite her usual good nature. Cymbalta 20 mg – severe dry throat, thick mucous, medications lodged in esophagus. Tried Tramadol 25 mg TID and Naproxen 500 bid.

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Incidentally, she saw a neurologist at Children’s Hospital in 2009 due to sudden onset of diplopia that was found due to allergy to contacts, and resolved with new contacts. She saw an allergist in 2010, and tested positive for nonspecific autoimmune disorder: ANA 1:160 speckled, positive for food sensitivities, and after four months of stopping certain foods, ANA was negative: gluten, dairy, garlic, broccoli, lima beans, banana, asparagus, pineapple, oyster, mushroom. While eating those foods she had IBS-C, stomach would harden, causing vomiting, and she lost 30 lbs, was 120 before —- it is part of the leaky gut syndrome that prevented her to absorb certain nutrients. She has regained weight and all symptoms resolved. She does not have dry mouth or dry eyes. She is sensitive to normal doses of medications like her grandmother.

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Exam: Toes are cold on the left. At the moment, no changes in hair, skin color, temperature, sweating. Stretch reflexes symmetrical, brisk in both lower limbs. She uses a cane but is able to walk slowly without limp, carefully, holding both arms stiffly at her side as she concentrates on walking. Sensory examination was not detailed due to patient discomfort and long trip from home that was very tiring.

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Treatment: Prednisone was rapidly tapered off. Begin 1 mg low dose naltrexone [LDN]. Begin N-acetyl cysteine [NAC] 600 mg x 3/day for “cold” CRPS – it is reported to take 3 or 4 months to help.

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Reponse: Mom wrote a few days later, “On the way home from our visit in La Jolla, K started to experience sensation in her leg. You had asked her at the appointment if she had numbness and she could feel some in the back of her leg. She didn’t realize the extent of it. The Naltrexone [1 mg] seems to be awakening areas of her leg. She has felt more muscle pain as well. She feels this may be because she is able to use more muscles in her leg with the increased feeling. She also had her foot stepped on the next day (Saturday). In the past, she would have been incapacitated with the pain for a couple weeks. With the Naltrexone, she felt very little pain at all. We were both very excited to see these changes. 🙂 She is at about a level 3 to 4 in pain.”

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Encouraged mom to continue increasing LDN as tolerated.

11/16/11, ” K is pain free at 3 mg of Naltrexone. We are not sure of any side effects at that level as she has a cold/flu and has had nausea and headaches. She does not have any sleep issues so far. K thought the Delsym was making her lightheaded. She will start it again as soon as she is feeling better.…

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Needless to say, it makes me very happy to know I am able to help someone in pain, especially a child.

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11/21/11: “We are thrilled too! The only things she is taking is the NAC and the naltrexone. When she tried 2mgs the pain receded to just the upper back of the leg. She also noticed the minor cut she had that day burned a lot. At 3mg all pain just vanished. I can’t tell you how excited we are. Her muscles are a bit sore in the leg as she is exerting herself more in physical therapy…. I am interested to see K’s next autoimmune text results in 6 months. I am wondering whether her Autoimmune test results will be negative from taking the naltrexone.”

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1/15/12, “K has been using the LDN at 4 mg and it is working better for her….Once K has recovered from the mononucleosis and is back on her feet again she will know for sure whether her leg pain is gone when standing in one position. If not, she will try the dose at 5 mg and let you know how that goes.”

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The material on this site is for informational purposes only, and is not a substitute for medical advice,
diagnosis or treatment provided by a qualified health care provider.
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For My Home Page, click here:  
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Ketamine Intranasal for Rapid Relief of Pain and Depression


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Poorly managed pain can evolve into chronic disease of the nervous system

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Ketamine is an important analgesic, more important than opioids. It can dramatically reduce pain, and rapidly relieve depression and PTSD.  Please read my earlier posts here and here. And the NPR report here just after I posted this (skip to their last section). Yes, it is FDA approved and legal. One woman said:

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 ‘It was almost immediate, the sense of calmness and relaxation.

‘No more fogginess. No more heaviness. I feel like I’m a clean slate right now. I want to go home and see friends or, you know, go to the grocery store and cook the family dinner.’

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NPR again reports ketamine’s rapid relief of depression. A 28 year old man whose refractory depression began at age 15, after ketamine, says:

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‘I Wanted To Live Life’

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Stephens himself has vivid memories of the day he got ketamine. It was a Monday morning and he woke up feeling really bad, he says. His mood was still dark when doctors put in an IV and delivered the drug.”Monday afternoon I felt like a completely different person,” he says. “I woke up Tuesday morning and I said, ‘Wow, there’s stuff I want to do today.’ And I woke up Wednesday morning and Thursday morning and I actually wanted to do things. I wanted to live life.”.
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Since then, they treated him with Riluzole that is FDA approved for ALS and has one of the dirtiest side effect profiles I have ever seen in medicine with serious organ toxicity. Ketamine rarely causes mild transient side effects, usually none. It appears the concern is how ketamine is used on the street with potential for abuse. I do not see ketamine abuse in my patients, some of whom are on opioids for pain or Valium family medicines from their psychiatrist. All of those have a greater potential for abuse, also not occurring in my patients. Pain and/or depression can lead to suicide.
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About 18 months ago, researchers at Yale found a possible explanation for ketamine’s effectiveness. It seems to affect the glutamate system in a way that causes brain cells to form new connections.
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Researchers have long suspected that stress and depression weaken some connections among brain cells. Ketamine appears to reverse the process.

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It would be of interest to see a case report of the bladder problems they mention. Is this in a single drug addict who used many unknown medications on the street? Several physicians have infused IV ketamine for persons with pain for many years, in far higher doses than I prescribe, with no report of any but transient minor symptoms.

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David Barsook’s 2009 review, reference below, describes changes that cause memory loss and brain atrophy with chronic pain, in particular, Complex Regional Pain Syndrome (CRPS), and they also occur with chronic depression:

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With the onset of chronic pain (including CRPS) a number of changes in brain function occur in the human brain including but not limited to: (1) central sensitization ; (2) functional plasticity in chronic pain and in CRPS; (3) gray matter volume loss in CRPS ; (4) chemical alterations; and (5) altered modulatory controls. Such changes are thought to be in part a result of excitatory amino acid release in chronic pain. Excitatory amino acids are present throughout the brain and are normally involved in neural transmission but may contribute to altered function with excessive release producing increased influx of calcium and potentially neural death.

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Brain atrophy and memory loss has also been shown in chronic low back pain as well as in chronic depression.

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Barriers to management of chronic pain are many:

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Although opioids are effective for acute pain, effective treatment of chronic pain is often daunting, particularly neuropathic pain.

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Opioids have been shown to create pain causing imbalance in the glial cytokines that favor pain rather than relief of pain. Opioids carry the risk of opioid-induced hyperalgesia which is a severe pain sensitivity. They affect the brain and endocrine system. Opioids may fail to offer significant relief, fail to improve function, and risk misuse, abuse, diversion and death. Their costs are astronomic, insurance coverage is increasingly limited, the potential for complications may be life threatening in a hectic medical setting, side effects can be lethal, lack of physician training in use of opioids and alternatives to pain control lead to increasing deaths, addiction and diversion. It has become a national emergency and a trillion dollar war on drugs.

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Complications can be greatly reduced through use of a scrupulous history and physical examination, but reimbursement is directly proportional to the shortest time spent with a patient. Will that help assessment and care?

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Individuals may have dramatically different responses to opioid therapy; some may not tolerate any, and relief must be balanced with side effects that increase as the dose increases. Patient status may change and require IV, rectal or tube delivery instead of oral formulas; drug-drug interactions may require rapid changes, and disease of kidney, liver or brain may require modifications or stopping altogether. They may increase risk of falls and cause central sleep apnea with drop in oxygen because the brain fails to give a signal to breathe.

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Chronic pain can lead to loss of sleep, hopelessness, depression, anger and other mood disorders such as panic, anxiety, hypochondriasis and post traumatic stress disorder [PTSD]. Treatment of mood disorders are shown to profoundly reduce pain perception and/or ability to cope with pain.

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Ketamine is anti-inflammatory and can reduce the need for opioid use, thus reducing the pain and side effects caused by opioids.

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Nasal ketamine is more effective than oral ketamine for pain relief; oral dosing has no effect on depression.

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Nasal delivery of ketamine is now possible due to advances in metered nasal sprayers that deliver a precise dose. No needle is required, no IV access, no travel to a specialist needed.

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You can carry pain relief with you and use it as directed when it is needed.

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Ketamine is an NMDA antagonist: it antagonizes the NMDA receptor which plays a profound role in pain systems and centralization of pain.

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Ketamine is neuroprotective and it can help other disease states as noted by Barsook, 2009:

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Besides improvement in pain, “there may be lessons from other diseases that affect the brain; it is noteworthy that acute ketamine doses seem to reverse depression and ketamine decreased prevalence of post-traumatic stress disorder (PTSD) in soldiers receiving ketamine during their surgery for treatment of their burns. In addition ketamine attenuates post-operative cognitive dysfunction following cardiac surgery that has been known to produce significant changes in cognition. [emphasis mine] The data suggest that the drug can alter or prevent other conditions based on its NMDAR activity where other drugs NMDA receptor antagonists are perhaps not as effective in these or pain conditions. Lastly, NMDA antagonists have been used in degenerative disease (and pain may be considered a degenerative disease as defined by loss of gray matter volume, see above) with mixed effects perhaps relating to how they act on specific NMDA subtypes. Taken together, ketamine may act not only on sensory systems affecting pain intensity, but also on a constellation of brain regions that are involved in the pain phentype. [sic, phenotype]”

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Side Effects

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Ketamine is more frequently used in babies and children than in adults because high doses of ketamine can induce hallucinations in the adult. Importantly, it is used in high dose in adults for treatment of Complex Regional Pain Syndrome.

Low doses, cause little or no side effects in adults. If present, they are transient and often resolve in 20 minutes. Patient who respond to ketamine report good acceptance as they find the relief of pain and/or depression far outweighs any short term minimal discomfort.

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Pain care reform is urgently needed.

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Research funding for pain is less than half of one percent of the NIH budget. More research is needed, but research on low dose ketamine for treatment of pain and depression has gone on for twenty years.

The public health crisis of untreated pain, which often results in disability, parallels the country’s struggle to halt the cost of health care. The longer a person remains with untreated pain, the less likely they are to return to work or to be employable.

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Conclusion

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Pain control requires urgent attention. It is past time to put into practice the use of this valuable medication so people can get on with life instead of being mired in chronic pain that for many risks suicide and ensures continuing decades of disability. Academic studies are usually limited by defining a predetermined dose rather than clinically titrating to effect. Thus no surprise, they find no effect as every patient will have no response until they reach their dose. And that dose, in my experience, falls into a bell shaped curve. One size does not fit all. Some respond at very low dose, others require much more, and the majority fall between.

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In my experience prescribing ketamine for ten years, only a rare person has problems. Almost all find it has returned function or significantly relieved pain. Some have been able to entirely eliminate opioids that did nothing for their pain for decades, though they dutifully returned to the MD every month to chronicle that pain. Pain continued to be rated ten on a scale of ten; patient always compliant despite side effects of constipation and often depression. My patients find the benefits of nasal ketamine far outweigh the relief of oral ketamine and at much lower doses with fewer side effects.

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Further, while the pain relief may be short lived, some find it gets better with repeat dosing, and relief of depression may last one to two weeks with a single dose.

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References

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http://www.wjgnet.com/1007-9327/10/1028.asp  Ketamine suppresses intestinal NF-kappa B activation and proinflammatory cytokine in endotoxic rats.

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CONCLUSION: Ketamine can suppress endotoxin-induced production of proinflammatory cytokines such as TNF-a and IL-6 production in the intestine. This suppressive effect may act through inhibiting NF-kappa B.

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http://informahealthcare.com/doi/abs/10.1080/J354v16n03_03  Ketamine as an Analgesic Parenteral, Oral, Rectal, Subcutaneous, Transdermal and Intranasal Administration

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Ketamine is a parenteral anesthetic agent that provides analgesic activity at sub-anesthetic doses. It is an N-methyl-D-aspartate (NMDA) receptor antagonist with opioid receptor activity. Controlled studies and case reports on ketamine demonstrate efficacy in neuropathic and nociceptive pain. Because ketamine is a phencyclidine analogue, it has some of the psychological adverse effects found with that hallucinogen, especially in adults. Therefore, ketamine is not routinely used as an anesthetic in adult patients. It is a frequently used veterinary anesthetic, and is used more frequently in children than in adults. The psychotomimetic effects have prompted the DEA to classify ketamine as a Schedule III Controlled Substance. A review of the literature documents the analgesic use of ketamine by anesthesiologists and pain specialists in patients who have been refractory to standard analgesic medication regimens. Most reports demonstrate no or mild psychotomimetic effects when ketamine is dosed at sub-anesthetic doses. Patients who respond to ketamine tend to demonstrate dramatic pain relief that obviates the desire to stop treatment due to psychotomimetic effects (including hallucinations and extracorporeal experiences). Ketamine is approved by the FDA for intravenous and intramuscular administration. Use of this drug by the oral, intranasal, transdermal, rectal, and subcutaneous routes has been reported with analgesic efficacy in treating nociceptive and neuropathic pain.
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http://www.ncbi.nlm.nih.gov/pubmed/15109503  Safety and efficacy of intranasal ketamine for the treatment of breakthrough pain in patients with chronic pain: a randomized, double-blind, placebo-controlled, crossover study  Daniel Carr, et al, 2004
Crossover, 20 patients. Ketamine reduced breakthrough pain within 10min of dosing, lasting up to 60min
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http://www.ncbi.nlm.nih.gov/pubmed/15288418  Safety and efficacy of intranasal ketamine in a mixed population with chronic pain
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The intranasal route for ketamine administration has been applied only for pain of dressing changes in a single case study (Kulbe, 1998). In this patient, oxycodone and acetaminophen were ineffective to control pain during burn dressing changes in a 96-year-old woman cared for at home. She tolerated the burn dressing changes after three intranasal sprays of 0.1 ml each, in rapid succession, each containing 5 mg ketamine (15 mg total) (Kulbe, 1998).
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http://www.acutepainjournal.com/article/S1366-0071%2807%2900167-2/abstract  Safety and efficacy of intranasal ketamine for acute postoperative pain
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Ketamine delivered intranasally was well tolerated. Statistically significant analgesia, superior to placebo, was observed with the highest dose tested, 50 mg, over a 3 h period. Rapid onset of analgesia was reported (<10 min), and meaningful pain relief was achieved within 15 min of the 50 mg dose. The majority of adverse events were mild/weak and transient. No untoward effects were observed on vital signs, pulse oximetry, and nasal examination. At the doses tested, no significant dissociative effects were evident using the Side Effects Rating Scale for Dissociative Anaesthetics.
The safety profile following treatment with ketamine was comparable to that seen with placebo.
Although patients did report side effects of fatigue, dizziness and feelings of unreality more often following treatment with ketamine than following treatment with placebo, no patient reported hallucinations and the side effects were generally reported to be of mild or moderate severity, and transient. No serious adverse events were reported and the incidences of associated adverse events were comparable for ketamine and placebo. Although study medication was administered intranasally, nasal signs and symptoms were few and inconsequential. A distinctive taste, however, was reported more often following treatment with ketamine than following treatment with placebo.In conclusion this randomized, placebo-controlled, double-blind study, in 20 patients, has demonstrated that intranasal ketamine is safe and effective for BTP [breakthrough pain]. Our findings augment an early but promising literature documenting the effectiveness of nasal administration of a variety of opioids for pain management in adults (Dale et al., 2002) .
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~http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2875542/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2875542/  Ketamine and chronic pain – Going the distance, David Barsook, 2009

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This important paper covers essential points not mentioned by many, thus quoted at length below:

“Ketamine, brain function and therapeutic effect – neuroprotective or neurotoxic

With the onset of chronic pain (including CRPS) a number of changes in brain function occur in the human brain including but not limited to: (1) central sensitization ; (2) functional plasticity in chronic pain and in CRPS; (3) gray matter volume loss in CRPS ; (4) chemical alterations ; and (5) altered modulatory controls. Such changes are thought to be in part a result of excitatory amino acid release in chronic pain. Excitatory amino acids are present throughout the brain and are normally involved in neural transmission but may contribute to altered function with excessive release producing increased influx of calcium and potentially neural death. Here lies the conundrum the use of an agent that potentially deleteriously affect neurons that may already be compromised but may also have neuroprotective properties by mechanisms that include reducing phosphorylation of glutamate receptors resulting in decreased glutamatergic synaptic transmission and reduced potential excitotoxicity . Alternatively, ketamine may affect glia regulation of glutamate and inhibit glutamate release within glia. However, by whatever mechanism ketamine acts on CRPS pain, there does seem to be a dose/duration effect in that longer doses at levels tolerated by patients seem to prove more effective in terms of the duration of effects.

So what could be happening in the brain and what is required to alter brain systems and reverse the symptomatic state? Ketamine may diminish glutamate transmission and “resets” brain circuits, but it seems that a minimal dose and/or duration of treatment is required. Alternatively, ketamine may produce neurotoxicity and damage or produce a chemical lesion of affected neurons. These two issues are important to be understood in future trials. Reports from patients who have had anesthetic doses have included prolonged pain relief for many months. While the authors did not address issues such as the effect of dosing duration or repetitive dosing at say 6weeks, they did show a level of efficacy based on NNT that equals or betters most drug trials for this condition.”

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“Conclusions

As a community we have a major opportunity to define the efficacy and use of a drug that may offer more to CRPS (and perhaps other) patients than is currently available. This is clearly an opportunity that needs urgent attention and a number of questions remain to be answered. For example, is ketamine more effective in early stage disease? How does ketamine provide long-term effects? Further controlled trials evaluating dose, duration, anesthetic vs. non-anesthetic dosing are needed. Few of us really understand what it is like to suffer from a chronic pain condition such as CRPS. Ketamine therapy may be a way forward that can be brought into our clinical practice through further controlled studies that will allow for appropriate standards for use in patients.”

 

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The material on this site is for informational purposes only, and is not a substitute for medical advice,
diagnosis or treatment provided by a qualified health care provider.
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Please understand that it is not legal for me to give medical advice without a consultation.

If you wish an appointment, please telephone my office or contact your local psychiatrist.

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For My Home Page, click here:  Welcome to my Weblog on Pain Management!
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