Friday, September 27, 2013

"Testimonials don't lie," and Other Lying Lies

For those people who keep contacting me in hopes of converting me to being a believer in the "testimonial" method of explaining the miracle of CALMARE / Scrambler Therapy for CRPS, I would like to share with you the type of "testimonial" video that does, but still only to a degree, have an impact on me.

This is Dr. Anthony Kirkpatrick, director of the only CRPS / RSD research center in the world so uniquely dedicated (The Reflex Sympathetic Dystrophy Treatment Center and Research Institute in Tampa, Florida) and his post 3-day continuous subanesthetic ketamine treatment interview with a patient with longstanding CRPS as well as sciatic nerve injury.

Subanesthetic ketamine treatments did not work for me, but I do not then go out and give negative "testimonial" diatribes about it.  I understand the science behind it, and knew going in that my protocol was not the optimum one (I couldn't reach the desired dose; I was fighting a very active osteomyelitis; I was going through a period of severe spasticity; plus, success in longterm sufferers is harder to achieve).

My insurance covered the treatments, something they won't do for CALMARE.  I did outpatient treatments, roughly 3-4 times a week.  At the end of this several month-long effort, we attempted to approximate Dr. Schwartzman's famed protocol, which he was kind enough to send me.  I even weaned myself off of methadone and percocet -- fast and by myself (not the recommended way, but I wanted to afford myself every chance of success, and Dr. Schwartzman wants all those glial cell endings available for reprogramming!).

My point is that the CALMARE snake oil pitches are vague and full of, frankly, nonsensical statements. Compare this video by Dr. Kirkpatrick with what is offered by Dr. D'Amato.  Then try and tell me, as a recent reader did in a comment, that "Testimonials don't lie."*  Puh-leeze.

3-Day Ketamine Treatment for Complex Regional Pain Syndrome
uploaded to YouTube by dockirkpatrick


Calmar Pain Relief Therapy - Nancy's Testimonial
uploaded to YouTube by CalmarPainReliefcpr·

*****     ***     *****     ***     *****     ***    *****     ***     *****     ***     ***** 
* Kelly Ann Sipes (Phillips) said...Actually Bianca, there is evidence that supports the Calmare/ST, and the workings of the "non pain" signals that are emmitted from the machine replacing the "painful" nerve signals(which is CRPS). All of this nerve pain and mis information of signals to the brain then trigger the autonomic response and wind up leading to the swelling and color changes, hair/nail growth and microvascular issues that cause the osteopenia. My daughter had the severe color changes and dystonia and when she was hooked up, after he found the correct placement of the leads and the correct "non pain signals", her color returned to normal and her toes are starting to become less dystonic. I have been in the medical profession for over 20 years and have never witnessed anything like it before.
There is no cure to CRPS only treatment and all the other therapies are for the most part invasive, have side effects and for our situation did not work. The blocks, the ketamine, the SCS, the medications....The negative far outweighted the slight amount of relief if any that she would get. You need to get to the root of the problem and that is the nerve pain and how the brain is "mis-interpreting" these terrible signals and causing the myriad of other issues. Dr. D has 2 books of testimonials of before and after treatment and gets permission from his patients to record their progress. He has had some patients that were bad, they looked as if they were going to loose a limb. It is hard to discount that 90% of his patients have improvement. That is a huge number, and scientific research or not clinical trials or not it is a moot point. It works. Testimonials don't lie. Not everyone will respond but 9/10 are not bad odds. I would reconsider and look into it. And before you go and bash someone and call people names and accuse them of something that they are not guilty of you should have your "research" done and done correctly. It would be ashame if someone was to base their treatment choices on your lack of personal experience.
Best of luck. [emphasis mine]
          *****     ***     *****     ***     *****     ***    *****     ***     *****     ***     *****

This is where I am supposed to blithely slough off a remark like... "different strokes for different folks" or even, I dunno, "beauty is in the eye of the beholder." Or "a TENS unit by any other name would smell as fishy."

Instead, I think I'll post this cool graphic I stole from Daily Kos yesterday. I knew I'd want to use it one day but didn't think I'd be prodded to do so this soon!

© 2013 L. Ryan

"Outside of a Small Circle of Friends"

good evening, i am going insane.  would you like to come with?

my eye surgeon opined, last week, that i was having an unusual inflammatory reaction in my post-op right eye.  this was no news to moi, as i experienced schizophrenic weeping:  one happy, bright eye;  one red, upset, hysterical eye leaking in much the same manner as my brain.

she got all scientific and crap, actually visualizing with her many shiny toys the aforementioned inflammatory cells.

[i make them nervous.  all of that ocular equipment is expensive, fragile, and often hanging around the exam rooms in odd and unexpected places and ways.  so in i come in a wheelchair, wielding a cane, doing wheelies, waving my shoulderless arms around like a spastic spastic person, losing my balance and reaching out to grab stuff -- anything, even expensive, fragile ocular equipment -- to avoid falling...  okay, so it's not anywhere near that bad -- but you should see their eyes, the fluttering of their hands.  they actually end up more on the twitchy end of the continuum than i am.  it's a gas.]

so... tuesday, we careened back over there, really giving them the heebie-jeebies because in addition to my usual ineptitudes, i was either having an extended asthma attack or developing a rapid pneumonia.  my pressures were elevated, which any layperson could have explained was the result of the hacking and wheezing with which i had replaced normal respiration.  i had called good old doctor go-to-guy and his supernurse, and arrangements were made for me to head over to get a chest film after getting my eye pressures and breaking the priceless ophthalmologic doodads.

no pneumonia, no asthma, just a rapid onset bronchitis, also right-sided, for which an equally rapid antibiotic was added to my collection of jewel-toned pills and capsules.

however, starting yesterday, the joys of hacking and one-sided weeping were augmented by the left eye kicking in, majorly.

i'm sure the surgeries were successful and that i can see again.

it's just that i can't see.

too busy dealing with bugged-out sclera and fuzzy, burning TEARS.  i asked tuesday whether any of the eye drops could actually get into an eye that is forever weeping, and got a throat-clearing sort of answer. doctors need to stand in front of a mirror and practice saying, in a normal, confident voice, "i don't know." who would think any less of them?  not me!

so i religiously apply the medications, and they all immediately join the downstream flow of salty goodness. they'd have a better chance of making it to mine eyeballs if i put them in mine ears.

in the realm of "too much information," phlegm chromatics have shifted from yellows to greens, and i can't remember, or care, whether that means something good or bad.

in other news, i played plumber's helper today as sven labored under one of the manor's thirty-two kitchen sinks.  it was a case of the doohickey not functioning and the plumber's clay or goo or whatever it's called having dried up.  a small leak.  but small plumbing problems still mean having to take apart major bits of pipes and whatnot.  i held the flashlight and turned water on and off when so instructed.  believe it or not, i actually made several small suggestions that were helpful, too.  sven was good-humored, my hand was steady, i felt like a wheezing, histrionic rock star doing community service.

i did a lot of reading, which clearly was stupid, but -- i ask you -- was it worse than spending the day curled up under a quilt listening to music?  there are many chores waiting but my body wasn't having that today. helping sven quell the drip-drip-drip was my best effort.

anyway -- my favorite segue -- one of the things i read was about how the online version of popular science magazine -- something i actually do read -- had reached an editorial decision to no longer allow online comments to their articles.

oh, i bet you think you know me.

"hmm," thought i, in a perfectly reasonable fashion, as i dabbed at my crimson orbs with a fresh kleenex.  "i wonder what brought that about."

knowing it to be a reasonable publication, knowing it, by deduction alone, to be science-based, i figured they had a good reason.  no, i did not phone, email, text, tweet or holler for the ACLU to come defend trampled free speech.  there was no wailing -- couldn't if i'd have wanted to -- about "big brother" coming home to roost, yet again, among my favorite chickens.  [i dunno, i just wrote it, i don't know what it means.]

the reason is sad, and it is one that all of us will understand:

A politically motivated, decades-long war on expertise has eroded the popular consensus on a wide variety of scientifically validated topics. Everything, from evolution to the origins of climate change, is mistakenly up for grabs again. Scientific certainty is just another thing for two people to "debate" on television. And because comments sections tend to be a grotesque reflection of the media culture surrounding them, the cynical work of undermining bedrock scientific doctrine is now being done beneath our own stories, within a website devoted to championing science.

for me, as an always correct progressive sort, this was a prophetic ringing of the bell.  i've been driven to distraction by otherwise intelligent people who want to so manipulate archaeological, botanical, geological facts, and other forms of substantiated historical record so that jesus had the opportunity to forgive the dinosaurs while lunching with sinful neanderthals -- just before the start of world war two and that whole charade of a story about the holocaust...

these same people can be shown facts about the frightening sang froid of the bush-cheney-wolfowitz-rumsfeld invasion of iraq by means of deliberate, repeated lying and manipulation of a grieving citizenry and a watchful but essentially trusting group of allied nations... and within minutes, these folks are parroting the lies again, but now they're also impugning your patriotism as an added lying lie.

i could start on the political right and the same process of regurgitating lies about obamacare, the economy, the ecology of the planet, or the overt racism of their entire endeavor -- how dare that smartass, dumb kenyan jigaboo socialist claim the right to try and govern the greatest country on god's formerly green earth?

and i think popular science magazine has it right.  this is grotesque aping of a very sick media culture that feeds jacked-up pop rocks to the brains of already slightly-twisted thinkers.  there's this woman whose tweets i read (because i generally care for her well-being) who grows apoplectic but also eerily HAPPY when she explains how obamacare puts the control of patient care under the devious thumb of insurance companies. you see, before now, her doctor rang up the insurance company and told them how he wanted things done, and the insurance company said, "yes, doctor... of course, doctor."  she thinks obamacare is behind insurance companies' drug formularies -- that they never existed before this black man dreamed it all up.

she is, of course, an isolationist and a fan of us/them constructions, but especially of "not me" verbiage.

her grasp of foreign affairs ends at the end of shock jocks' thought organs and smarmy rants,  and she's simply orgasmic over anything amenable to a conspiratorial story line.

facts, proof, science -- forget about it!  being a lying liar with no responsibility to transmit truth is just plain more fun.

she's not the best example, and far from influential -- i just sometimes despair over the death of common sense, science, critical (and original) thinking in ordinary people.  you know, the salt of the earth.

it makes me want to weep, except that i'd do most anything right now to stop crying a river.

i love political back-and-forth and am guilty of over-the-top yapping just to keep the shuttlecock flying until closing time... but i am, in truth, fiscally conservative, naive about political intentions, a slave to history and yet a poor student of it, and, oh, i could confess my own knee-jerk sins for far too long.  but i research the "other" side of issues as much as i can, and question my self and my opinions sans cesse.

there is also a guilt that i think only a prof, a teacher, can feel -- a sense of truly having failed at one's job, even if that job amounted to nothing but foreign language skills and the literature of "different" people.  every prof, every teacher knows that the mastery of critical thinking and stuff like logic, communication, and learning skills (for a forever plastic mind that forever thrives at learning) are the real objects of our labor, be we football coaches, french profs, or charged with special education.

by the way (another fan-freaking-tastic segue) -- did any of you follow the story of the 80-something year old adjunct french professor who dropped dead from the accumulated effects of lifelong systematic abuse and relentless poverty?  hmm?

[see "The Sad Death Of An Adjunct Professor Sparks A Labor Debate."  you'll be mumble-humming the refrain to "The Lonesome Death of Hattie Carroll" before the end of the third paragraph. I've seen estimates ranging from 45 to 75% as the rate at which adjuncts are bearing the undergraduate teaching load at universities these days.  When I taught at UC-Berkeley in the haze of a far distant past, the number was already abominable.  This is why Brother-Unit Grader Boob breaks into frightening bizarro laughter when an angry student throws the ultimate retort his way upon receiving a bad grade:  "yeah, well, i guess you're just in this for the money..."]

if i had any voice at all, i'd be singing some dear old pete seeger piece.

or phil ochs. lately, i've picked up that old fascinator again.  not that i'm calling phil ochs an odd bit of millinery.

why not... let's finish this evenings weeping and coughing up of lung with... "outside of a small circle of friends"?  it has just the odd divergent lightness of tinny piano and tone with the rock-in-the-stomach ring of truth that this whole post has been struggling so to convey.

© 2013 L. Ryan

Sunday, September 22, 2013

"Above all else, stay in life."

These were my feet, or as I call them "the things at the end of my legs," back
in 2011, which partially explains my reticence to update their current loveliness.  This is just to give
those who are unfamiliar with advanced CRPS an idea of what it can look like.  What it
feels like is in the realm of "difficult to describe without obscenities."  I have it in both arms and legs and
in the lower portion of my face.

If you sometimes feel the not-so-subtle pull of bias as you research articles and studies about CRPS, you may appreciate the work of the Cochrane Collaboration:

The Cochrane Collaboration is named after Archie Cochrane (1909-1988), a British epidemiologist, who advocated the use of randomised controlled trials as a means of reliably informing healthcare practice. We are an independent, not-for-profit organisation, funded by a variety of sources including governments, universities, hospital trusts, charities and personal donations.
In essence, they've assembled teams of researchers, possibly more diverse than most such teams, but no less qualified, that are guided by "what works." They review scholarly publications with effectiveness in mind, based on the evidence before them.

It is the kind of plain speaking that comes from thorough analysis, and that many of us need, especially when we are being offered and counseled all sorts of doom and gloom or wild therapies.  Sadly, some of these well-intentioned offers and counsels are motivated by an underlying greed.  Or so I hear...

So visit Cochrane Reviews --

Cochrane Reviews are systematic reviews of primary research in human health care and health policy, and are internationally recognised as the highest standard in evidence-based health care. They investigate the effects of interventions for prevention, treatment and rehabilitation. They also assess the accuracy of a diagnostic test for a given condition in a specific patient group and setting. They are published online in The Cochrane Library. 
Each systematic review addresses a clearly formulated question; for example: Can antibiotics help in alleviating the symptoms of a sore throat? All the existing primary research on a topic that meets certain criteria is searched for and collated, and then assessed using stringent guidelines, to establish whether or not there is conclusive evidence about a specific treatment. The reviews are updated regularly, ensuring that treatment decisions can be based on the most up-to-date and reliable evidence.
For everyone who already knows that regional or sympathetic blocks are largely ineffective and are still used mainly as a money-maker, this kind of evidence-based review can ease your mind.  And it is something you can cite when the procedure-oriented pain management clinics schedule your 200th block without any evidence of success the first 199 tries!

On the other hand, it is gloomy news, but not unexpected.  There is no magic bullet, no cure, no one therapy that has had overwhelming success, or even what most people would consider any success at all.  We patients with CRPS tend to look at one person who responds well out of a cohort of thirty as phenomenally good news!  There is much that is, as they say, "in the pipeline," but until those treatments come rolling out the medical assembly line and into the arsenal of our own local physicians, we are stuck with the "throw everything at it" approach.  

This is a frustrating way to deal with a horrific disease that not only debilitates the body, but the mind and one's social body, as well.  It empties our pockets and it empties our date books of most everything except medical appointments.  Even my dear Fred says, from time to time, that he cannot stand seeing and hearing about so much pain day in, day out.  (That's where we get our strangely grim smiling faces and gravely laughter from! The effort of suppressing the expression of what we have to feel is also debilitating.)

So take your cues from the "best evidence," rely on "what works" for you, and be vigilant about following research.

I don't mention it often, but think of it daily:  Back in the beginning years of coming to terms with this disorder, about which my doctors only offered confusion and pessimism (two of them cried), I kept running into the name of Drexel University Chair of Neurology, Dr. Schwartzman.  This was years before he offered me an "expedited appointment," which turned out to actually mean "over two years" away.  This was in the days of "What the heck is happening to me?  When will this pain stop?  Where are my legs!? What's wrong with my hands?"  I emailed him in the middle of the night, as the middle of the night is when most CRPSers are up.  In later years, he and his staff would send his research papers, making me break out dictionaries and strain my brain to understand.  Back then, however?  He gave me some summary information, was very kind, but the greatest thing he gave me was this gift of advice --

 "Above all else, stay in life."
-- Dr. Robert Schwartzman
(recently retired, just discovered! a well-deserved rest to him!)

It took me years to peel the layers of that onion... and I am peeling, still.  My appointment will never happen, and would be pointless now, but that bit of wisdom can be salvation in a rough moment.  Use it yourself, if you need it.  I don't think he'd mind...

I return you now to the Cochrane Review!

Which treatments are effective for the treatment of complex regional pain syndrome in adults?

O'Connell NE, Wand BM, McAuley J, Marston L, Moseley GL
Published Online: April 30, 2013


There is currently no strong consensus regarding the optimal management of complex regional pain syndrome although a multitude of interventions have been described and are commonly used.

To summarise the evidence from Cochrane and non-Cochrane systematic reviews of the effectiveness of any therapeutic intervention used to reduce pain, disability or both in adults with complex regional pain syndrome (CRPS).

Main results
We included six Cochrane reviews and 13 non-Cochrane systematic reviews. Cochrane reviews demonstrated better methodological quality than non-Cochrane reviews. Trials were typically small and the quality variable.

There is moderate quality evidence that intravenous regional blockade with guanethidine is not effective in CRPS and that the procedure appears to be associated with the risk of significant adverse events.

There is low quality evidence that bisphosphonates, calcitonin or a daily course of intravenous ketamine may be effective for pain when compared with placebo; graded motor imagery may be effective for pain and function when compared with usual care; and that mirror therapy may be effective for pain in post-stroke CRPS compared with a 'covered mirror' control. This evidence should be interpreted with caution. There is low quality evidence that local anaesthetic sympathetic blockade is not effective. Low quality evidence suggests that physiotherapy or occupational therapy are associated with small positive effects that are unlikely to be clinically important at one year follow up when compared with a social work passive attention control.

For a wide range of other interventions, there is either no evidence or very low quality evidence available from which no conclusions should be drawn.

Authors' conclusions: 
There is a critical lack of high quality evidence for the effectiveness of most therapies for CRPS. Until further larger trials are undertaken, formulating an evidence-based approach to managing CRPS will remain difficult.

This record should be cited as: O'Connell NE, Wand BM, McAuley J, Marston L, Moseley GL. Interventions for treating pain and disability in adults with complex regional pain syndrome. Cochrane Database of Systematic Reviews 2013, Issue 4. Art. No.: CD009416. DOI: 10.1002/14651858.CD009416.pub2

Assessed as up to date: March 1, 2013
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