To my frequent visitor looking for CRPS treatment in Florida...

To Whomever Keeps Visiting This Blog In Search Of "doctors who treat CRPS with Ketamine in Florida":

You live in the state that has the ONLY treatment and research facility in the United States entirely dedicated to CRPS / RSD, and whose director is one of the leading practitioners and researchers of ketamine therapy!

Please visit Dr. Anthony Kirkpatrick's website: RSD / CRPS Treatment Center and Research Institute

Best of luck to you!





© 2013 L. Ryan

"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

VS.

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

i cannot forget her

Two nights in a row of bitch-slapping is excessive.  But my anger at the leg and arm choppers from last night has been reignited this evening over the renewal of a memory I'd much much rather forget.

When Andrea Gianopoulos died in Mexico after her second ketamine coma treatment, I wrote rashly about it, and I hurt and angered her family.  I cared, and their feelings and anger mattered, but so much was wrong with both the German wing (then suspended) and the Mexican wing of the ketamine coma "trials" that I cared more about getting the word out.

I just ran across another blogger's post from January 2012 that was written with the approval of Andrea's mom Leslie.  It is to be noted that the blogger, Nancy Cotterman, had her attention drawn to Andrea's death by these words of Leslie's posted at my favorite place, Facebook {shudder}:

 "My daughter died from the Ketamine coma treatment"

I don't want to reinvent the wheel, hurt the Gianopoulos family even more.  I have the same intentions to which Ms. Cotterman lays claim:

Andrea, I hope that your story will cause people to stop and think about all of the risks before they make the decision to go to a foreign country with a less sophisticated health care system than that of the US.  Again, I'm not saying that we shouldn't go.  I'm saying that we all need to do our homework and know everything that we can about the treatment, the facility, the doctor, the risks, etc. before going to have the treatment. You need to weigh the quality of life that you currently have against the potential risks of the treatments.  Ultimately it is your decision and it should be an informed decision.

Perhaps when Leslie and Gus are feeling stronger, they can join us in our fight to get all insurance companies... to cover Ketamine here in the US.  Had Andrea's insurance company covered her outpatient follow up Ketamine after her trip to Germany PERHAPS (of course there is no way to be sure) it could have held her coma treatment. If, like Jon Haag, coma treatment were available here in the US PERHAPS (again there is no way to know because people die here in the US too) coma Ketamine would be safer.  At least, we wouldn't have the expense of paying out of pocket, travel and treatment would be available to more people.  The more a procedure is done, the safer it becomes.

There's no claim on my part or anyone's that the liaison folks in Tampa or the "trial" supervisors in Mexico did anything wrong.

There's loads of evidence that it is pure nonsense to call this activity a "clinical trial" or to claim that strict protocols are being observed.  That's where the bitch-slap comes in... again.

Andrea had already had one coma treatment, in 2002.  It failed to work, one supposes, because she had no access, financially, to the booster treatments that are supposed to be so crucial to the continued success of the coma.  Huge,.freaking break in protocol, right there.

That she went on to get so much worse, I regret, and regretfully, understand.  But what continues to freaking escape me is how, after heart surgery for a bad valve -- adding a significant comorbid condition -- she flies to the top of the list again for Germany.  But those "clinical trials" having been shut down due to Laura Becket's MRSA and paralysis (which could have happened anywhere, to anyone), somehow Andrea again rose to the top of the list for Mexico.

There are doctors and administrators who have made a lot of money on this compassionate outreach, and that is why protocols matter, that is why a tragic story should not have put a young woman's life at risk, and that is, perhaps, why this needs to stop.

There is enough evidence now that ketamine helps some handpicked patients (only of Dr. Kirkpatrick? only of Dr. Schwartzman?) that the trials, properly set up, strictly supervised, and sufficiently cold-hearted to be fair in their provision of access need to be brought to the U.S.

People are told there is a two year wait to see these CRPS gurus -- and they are the disease wizards -- but if you happen to also be monied and all that goes with, my how those limits disappear, the other waiting lists for the coma trials magically shrink.

I know this is the way of the world.  I bitch-slap the world, then.

My previous writing -- very raw -- about this topic can be found HERE. But not much has changed since I banged a different keyboard back in 2009:


How dare I intrude on the death of this lovely girl? Why can't I leave it -- her -- alone, in peace? In part, it is because of the evident lack.

There is nothing but silence around this death, hardly anything beyond the barest of acknowledgements.

Or the most private of them. The nearest and the dearest. And to them, I apologize -- no, rather I beg pardon, for this prurient interest -- not in Andrea, but in what happened *to* Andrea.

The ketamine coma trials... that is what we are made to say, you know -- "the trials."

How many other legitimate "trials" cost well over $50-60,000? How many other legitimate trials cost ANYTHING? 

How many other legitimate "trials" suffer a death and allow it to pass into silence, unexplained?
There has also been a high incidence of infection, particularly respiratory -- aspiration pneumonias.

Oh, and how many "trials" make way for someone to repeat the treatment, the benefits of the first time around apparently not having lasted? How was that expressed in the data collection of the second coma? Was the first treatment before the days of the "trials"? You know, back when a person basically only had to produce the money, and be sufficiently young and healthy (beyond having CRPS)? Wait... am I getting it all confused? Because it sure seems like today's requirements are eerily... no, *exactly* the same -- young, otherwise healthy, cash in hand.

My prurient interest has its roots in anger and envy -- as well as in a more legitimate need for information that was not forthcoming from those running the programs.


I cannot forget Andrea.  I cannot forgive the shortcuts that cut her short.  I cannot believe it has been so successfully buried, the truth.

"Can You Help?"

If you have CRPS, you're probably used to having medical types whipping out cameras and photographing your dystrophic beauty.  Believe me, I know what a boost it can be to the ego, and I remember the early days, when the ensuing struggle with vanity was almost a lost cause.

Since then, I've watched a lot of America's Next Top Model, learned all I could from Tyra and
The Jays, and now when a doctor pulls out a camcorder or a smartphone, depending on his specialty, I give him either a Fierce Eye or a full body Smize, then put my worst foot forward.

Yes, I jest, in a way.  It has become rare for me to be interested in "raising awareness for CRPS," even when it's done by art ('cause you know what an art patron I am, particularly of the bad and the grotesque!) because of the huge gaping emptiness that ensues.  I think I once wrote a post asking what came after "awareness."

Ah, but this is precisely where I am at risk of selling my soul to the Hornèd One (I tell you, hanging out at All Poetry has its perks -- Did you catch that?  "Hornèd"?  I added another syllable and set back poetry a hundred years with hardly any effort at all!).  This is when people manage to signal one another behind my back, shaking their heads in pitying sadness.  I hate pitying sadness.

If we're gonna do this, my fellow CRPSers?  We're gonna do it with Fierce Eyes one day, and a slinky Smize the next, and with engaging snark peppered with factoids from the NINDS cheat sheet.  "Yes, my brother, yes, my sister, that factoid is straight from the mouth of the National Institute of Neurological Disorders and Stroke, a major subdivision of the National Institutes of Health... snap..."

Or we can try this other thing that I just heard about on Twitter.  Read about on Twitter.  Since my Twitter experiences are mostly hallucinogenic, I hear, see, read, touch, and taste the flitting, flying 140 characters of stuff before me.  Sometimes, I feel them, too.

So there is this girl.  Her name is Nadia, and she is a Brit.  She is 17 years old and in her second year of studying Art and Design.  Her Dad has CRPS / RSD and she decided to organize her final project for school around the idea of a visual campaign to raise awareness of this disorder, disease, this madness, this... well, this CRPS / RSD thingy.

What she is asking is pretty simple, though it takes a bit of courage to put yourself out there.  Leave it to a smart and talented 17 year old to believe in us -- that we can show the world, or at least whoever sees her art show, what CRPS / RSD can look like.

You are to hold a placard of some sort -- paper, cardboard, whatever doesn't hurt you -- and record on it your name (optional), where you live, the areas of your body afflicted, how long since you've been diagnosed, and then sum up yourself or your experience with the pain of CRPS... in one word.

Nadia requests that you email your photos to NadzaCRPSProject@virginmedia.com and kindly remember that she has a deadline to receive them by 20 May 2013.  Obviously, if you have questions about the project, or formatting, or anything, email her directly.

What won me over was the photo of her Dad.  I expected something artsy-fartsy, maybe in scary black and white (though shooting CRPS in black and white feels like one is almost insulting the disease, you know?) -- maybe he'd sport a top hat and bunny slippers.  Or -- and this is tiresome -- he'd be half-collapsed, hand across his defeated brow, staring death rays at the camera.

Instead, she, or her Mom, or someone, took a snapshot of her Dad, just her Dad, and there's a lot of love in the mere act, and there's a real awareness of what CRPS is doing to that dear Dad.

Oh, boogers.  I am using it without her permission.  Well... hmmm.   She is distributing it on Twitter as an example of what she is looking for, so I'm hoping that I am just extending her own gesture.  I'll shoot a copy of this post over the pond to see if it's okay.  I promise.  I swear.  (Huge sigh of relief.  It's okay.  And Nadia took the picture, and apparently he, as will most of us, struggled with that one-word choice.  Thanks for the permission, and again, it's a great photo.)

I like his face.  I understand his face.

For me, the hard part of participating in Nadia's Project was dealing with the whole "awareness" issue, until that hair was finally so split as to be nonexistent.  The photograph was easy, except that it hurt to do it, but that's nothing.  Making the sign appear legible took three tries and that, too, was a bit hard.  Also hard -- time since diagnosis?  How many people with CRPS had it for years prior to diagnosis {waving::hands::like::a::maniac}?  Also... that ONE word bit.  I went with something that I feel captures the real moi as well as the impact of CRPS pain -- what a word coup!  But it was a difficult moment, deciding whether to tell the truth or to lie.  So I did what I thought Nadia would want, and used her Father for a reference.

This is what I just sent her:

By the way, those are two of the SIX (that's SIX) cotton/linen blend throw pillows that I got for $40 (that's FORTY buckaroos, mis amigos!).  They are a bit matchy-matchy for my taste but make a great clean and nature-oriented background for a shot of my necrotic and nasty feet.

I did not picture my face because I did not want to.  Then I wouldn't be able to see through the tears to type.  Sob.  Sob.  Besides, I love keeping track of my feet on the color wheel of the seasons.  We are in full winter here, and so, my feet are, of course, smaller than you've probably ever seen them, and much more in the blue range than the red.  I remember when Fred and I lived in a half-room cabin up in the hills, no electricity, leaky roof, dirt floor -- but we always had a guitar to play and blessèd free time to watch my feet change color for entertainment.  (We had one of them as-seen-on-TV Olde Brooklyn Lanterns.)

So let's help Nadia, and through Nadia, ourselves, via her final art project.  And here's a big hope and a prayer that her Dad feels better soon.

NOTE: Up top, in the first line "CRPS" is linked to the photographic gallery section of the Clinical Practice Guidelines, first put together by Dr. Anthony Kirkpatrick, now in its Third Edition and overseen by a distinguished Scientific Advisory Committee.  I happen to think it's a great document, and with a little time and work, accessible even to us laypeople.  So should a doctor give you The Shrug, and say something like "well, we're all working in the dark, here!" -- first, buy her an Olde Brooklyn Lantern and then gift him with a printout of the Third Edition of the Clinical Practice Guidelines.

I love Dr. Anthony Kirkpatrick and it turns out that Ochoa is not the only turd in town...

Dr. Anthony Kirkpatrick has pretty much dedicated his life to bettering the lives of people with CRPS / RSD, and having scoped out some of his other interests, he's kind of into bettering life on the planet, in general.

After many years in Anesthesiology and Pain Management at USF in Tampa, he established there the world's only RSD / CRPS Treatment Center and Research Institute.  If I had some bucks, I'd have been there when the doors opened.

[One of the majorly sucky things about CRPS / RSD 's most effective doctors and treatments?  You have to be monied to have access to them.  Oh, I'm sorry.  That's a universal truth!  I try to expunge the obvious from my posts, but it was a long night...]

I'm also not blind to the down side of such fervor as his, but I prefer it to torpor, and I definitely prefer it to doctors practicing CYA medicine or suffering terribly from Dr. God complexes.  I see him as the obvious antithesis to my archenemy Jose Ochoa, known on this blog simply, eloquently, as The Turd.

Anyway, here is a new Dr. Anthony Kirkpatrick video meant to expose, inform, and help:



Part 2 cannot be embedded, but here is the link to it:  Part II: Do doctors torture patients with CRPS?
Part 3 cannot be embedded, either:  Part III: Do Doctors Torture Patients?

The Old Yadda Yadda on CRPS Diagnosis and Treatment Criteria

Here is a commentary in IASP's journal PAIN, titled "The diagnosis of CRPS: Are we there yet?" -- by


R. Norman Harden
Center for Pain Studies,
Rehabilitation Institute of Chicago,
Chicago, IL, USA
Northwestern University,
Department of Physical Medicine and Rehabilitation,
Chicago, IL, USA,
Tel.: +1 312 238 5654; fax: +1 312 238 7624.
E-mail address: nharden@ric.org

The content of the commentary is... predictable, but needs to be said at least a few times a year, so "thank you," Dr. Harden.  He beats the drum for diagnostic criteria with regularity and is the author of COMPLEX REGIONAL PAIN SYNDROME: TREATMENT GUIDELINES.


If you read enough of this blog ("My eyes!  My eyes!"), you'll know that I much prefer Dr. Kirkpatrick's Treatment Guidelines, available HERE.

Making the Case

Prior to my personal experience with medical trickery and fraud, both as agented-actions by individuals and as some sort of weird cosmic confluence of systemic karma (and you thought such phrasing died with Agnew!), I would not have noted or given much weight to the following video.

But then, I know who Dr. Anthony Kirkpatrick is, and have always been impressed by his integrity, his scholarship, and his heart.

I wish I did not know who he was, nor anything about wicked health care. And, of course, the issue of fabricating research brings to mind the Astounding Case of Dr. Scott Reuben. See our previous posts about that medical reprobate HERE.

Dr. Kirkpatrick is at the forefront of treatment, research, and education about CRPS (the decorative leitmotif of our blessed blog...). For many years, he was with USF's Anesthesia and Pain Management Department in Tampa, where, in 2008, he opened The RSD / CRPS Treatment Center and Research Institute, the only institute of its kind in the world.

Anyway, he is one of the few sources of hope for people like me, who have pretty grim cases of CRPS.

As I said, I like his heart. It's an activist's heart and rooted in seeking justice. And, yes, I am a fan of the in-your-face, public-shaming approach to wrongs that are being covered-up... Sadly, it is sometimes the only way to attack a problem.

And, as we like to say here in Marlinspike Hall, deep, deep in Tête de Hergé: Transparency is good!



Uploaded [to YouTube] by dockirkpatrick on Mar 26, 2011

Northwestern University fails to protect patients with complex regional pain syndrome, so called reflex sympathetic dystrophy.


Norman Harden MD used mathematical formula in court to bolster his claim that the patient in the litigation does not need treatment for CRPS.

Helpful reading:

Emails between Dr. Kirkpatrick and Dr. Harden

Complaint to Northwestern

Dr. Harden's Deposition (plus Vol. 1 as Word doc)