Evidence-based Review of Neuromodulaton Treatments in CRPS: A Crisis of Data, A Crisis of Faith

This is an odd and interesting article.  It's honest and, to my understanding of things, a fair assessment of where we are at in available, actual CRPS neuromodulation treatments, of which I am not a fan, awaiting, like many, some evidence.  This is a kind of rubber-meets-the-road piece, beginning and ending with the usual lament of LACK OF EVIDENCE.  Clearly, it's going to be a long while before evidence-based practices will be scientifically established for this God-forsaken disease.  The full text is available in RSDSA.org's excellent research library, and you can access it (and download it) HERE.

Neuromodulation: Technology at the Neural Interface
(onlinelibrary.wiley.com) DOI: 10.1111/j.1525-1403.2012.00531.x

FROM THE EDITOR-IN-CHIEF -- Robert M. Levy, MD, PhD
Evidence-Based Review of
Neuromodulation for Complex
Regional Pain Syndrome:
A Conflict Between Faith
and Science?

While it was more than 20 years ago, I remember well the face of
a 19-year-old woman who presented to me with what was then
called reflex sympathetic dystrophy (RSD). Having sustained an
innocuous injury during gymnastics practice four years earlier,
Susan developed discoloration, swelling, and severe burning pain in
her foot and leg. Aggressive rehabilitation therapy, pharmacotherapy,
and even sympathectomy had failed to improve her symptoms.
A trial of spinal cord stimulation (SCS) was highly successful
and a permanent system was implanted with complete relief of her
pain and resolution of her symptoms. Most memorable to me was
that she returned seven years later, symptom free, requesting that
her stimulator be removed prior to her planned pregnancy. The
smile on her face as she held her newborn child was the only testament
that I needed to convincemyself of the efficacy of SCS for RSD.
Since that time, I have had many successes and more than a few
failures of SCS for what is now known as complex regional pain
syndrome (CRPS). We have developed new stimulation techniques,
including high-frequency and intraspinal nerve root stimulation, to
rescue the therapy in patients who were no longer obtaining relief.
Nonetheless, I remained a strong believer in the value of SCS for
CRPS, both due to my personal anecdotal experience and the
support of at least one randomized, controlled clinical trial (1).
CRPS is characterized by continuous, intense pain out of proportion
to the severity of an injury, if any has been identified, which
tends to get worse over time. Typical features include changes in
color and temperature of the affected limb(s) accompanied by
intense burning pain, skin sensitivity, sweating, and swelling (2).
CRPS type I occurs in the setting of a soft tissue injury, while CRPS
type II develops following nerve injury. Of particular note is that
neuromodulation therapies are widely considered to be valuable
therapies for medically refractory CRPS. In fact, the website of the
National Institute of Neurologic Diseases and Stroke states that
“Spinal cord stimulation. . .appears to help many patients with their
pain” and that “Intrathecal drug pump. . .decreases side effects and
increases drug effectiveness” (Figs. 1 and 2) (2).
It was with this mindset that I approached a recent satellite conference
of the International Association of the Study of Pain (IASP)
Meeting in Milan, Italy. Organized by Drs. Joshua Prager, Michael
Stanton-Hicks, and Candy McCabe, “A Comprehensive Analysis of
CRPS Treatment: The New, The Old,WhatWorks and What Doesn’t—
Updating the Treatment Algorithm” was an IASP Pain and Sympathetic
Nervous System Special Interest Group symposium and CRPS
guidelines update meeting (Figs. 3–5).
With the participation of such august clinicians and neuroscientists
as Ralf Baron, Frank Huygen, Srinivasa Raja, and J.J. Van Hilten,
to name a few, this conference promised to be critically important
for the direction of CRPS research and therapy for many years to
come. I was honored to have been invited to critically review and
present the data supporting neuromodulation therapies for CRPS.
In performing a formal, evidence-based review of the literature, I
expected that an objective and impartial evaluation would fully
support my strongly held personal beliefs of the efficacy of neuromodulation
therapies for CRPS. Suffice it to say that my faith was

seriously challenged.

[He goes on to do an evidence-based review of neuromodulation modalities in treating CRPS, in each case coming up with insufficient, or no, satisfactory studies to support evidence-based conclusions]

PERIPHERAL NERVE FIELD

STIMULATION (PNfS)

PERIPHERAL NERVE STIMULATION (PNS)

SPINAL COLUMN

STIMULATION (SCS)

DEEP BRAIN STIMULATION (DBS)

MOTOR CORTEXT

STIMULATION (MCS)

INTRATHECAL DRUG DELIVERY (ITDD)

NON-NEUROMODULATION THERAPIES

FOR CRPS

CONCLUSIONS
I come back to the subtitle of this article: a conflict between faith
and science. I have great personal faith that in carefully selected
patients, neurostimulation and ITDD can be effective treatments for
the pain and spasticity related to CRPS. To be completely honest, I
also have great faith that in some patients, neuromodulation helps
neither of these CRPS symptoms. However, we are left with a gap
between our faith and our science. I routinely recommend that we
assess our therapies with the same critical eye as those who do not
believe in the effectiveness of neuromodulation therapies. Those of
us immersed in the field of neuromodulation often look askance at
the literature supporting sympathectomy for CRPS; however, we
have seen that the literature support for both interventions is seriously
flawed.
While a lack of evidence is not a lack of effectiveness, it remains
a lack of evidence. When our patients, our society, and our reimbursement
systems all demand evidence-based support of our
clinical practice, we cannot ignore the fact that there is inadequate
evidence to highly recommend most neuromodulation therapies
for CRPS. Some issues cannot be scientifically proven, and in those
cases we must rely upon our faith for guidance. The efficacy of
neuromodulation therapies for CRPS is, however, something that
can be proven or disproven. We have come a long way toward this
goal over the past decade, but we have much more to do. External
funding agencies, including the National Institutes of Health, have
expressed a renewed interest in supporting comparative outcomes
and cost-effectiveness research. By taking advantage of
these opportunities and supporting properly designed, carefully
executed studies, we can finally answer these questions and
improve the effectiveness of chronic pain therapy.
Robert M. Levy, MD, PhD

Editor-in-Chief

Last Stand at Fukushima (Hat tip to TW)

Last Stand at Fukushima

My Brother-Unit TW is doing his damnedest to inform and cajole people into awareness of the Fukushima plant's Number Four Unit and the plans to just kinda yank those spent rods out.  From what this Luddite gathers, the spent rods are sitting somewhat strangely in the water... oh, and that water?   The condition of its all important neutron absorbers is basically unknown.

So maybe this is not another in that famous series of "What, me worry?" scenarios we keep dramatizing in matters concerning our home planet and our nuclear proficiencies.

I'm as ignorant as the next fool, so TW is teaching me lots, and yes, scaring me.  What's a brother for?

No, seriously.  What's a brother for?  [TW and Grader Boob:  Insert one wink, one nod, one finger aside the nose.]

So I pass on to you some of the informative links he's posted over at American Idyll, an amazing place. And as does that blogger, we at Marlinspike Hall, a nuclear free zone, serenade you with "Morning Dew," though we've sinned by replacing the Grateful Dead cover with The Jeff Beck Group (1968).

Not feeling like doing much reading? Here's the steno version, then:

Tepco continues to pour more water onto the proximate site of three melted reactor cores it must somehow keep cool.Steam plumes indicate fission may still be going on somewhere underground. But nobody knows exactly where those cores actually are.
Much of that irradiated water now sits in roughly a thousand huge but fragile tanks that have been quickly assembled and strewn around the site. Many are already leaking. All could shatter in the next earthquake, releasing thousands of tons of permanent poisons into the Pacific.
The water flowing through the site is also undermining the remnant structures at Fukushima, including the one supporting the fuel pool at Unit Four.
More than 6,000 fuel assemblies now sit in a common pool just 50 meters from Unit Four. Some contain plutonium. The pool has no containment over it. It’s vulnerable to loss of coolant, the collapse of a nearby building, another earthquake, another tsunami and more.
Overall, more than 11,000 fuel assemblies are scattered around the Fukushima site. According to long-time expert and former Department of Energy official Robert Alvarez, there is more than 85 times as much lethal cesium on site as was released at Chernobyl. 

 --Harvey Wasserman
Global Research, 9/20/13

Fukushima Forever
Fukushima Daiichi nuclear disaster
Fukushima Fallout Awareness Network (FFAN)
A Letter to All Young Athletes Who Dream of Coming to Tokyo in 2020:  Some Facts You Should Know About Fukushima
Webcast Portal:   ‘The Medical and Ecological Consequences of the Fukushima Nuclear Accident,’ held at the New York Academy of Medicine, NYC, March 11 & 12, 2013, co-sponsored by The Helen Caldicott Foundation and Physicians for Social Responsibility.
MoveOn Petition: The World Community Must Take Charge at Fukushima
Breaking Energy News

MORNING DEW

Walk me out in the morning dew my honey,

Walk me out in the morning dew today.

I can't walk you out in the morning dew my honey,

I can't walk you out in the morning dew today.

I thought I heard a baby cry this morning,

I thought I heard a baby cry this today.

You didn't hear no baby cry this morning,

You didn't hear no baby cry today.

Where have all the people gone my honey,

Where have all the people gone today.

There's no need for you to be worrying about all those people,

You never see those people anyway.

I thought I heard a young man morn this morning,

I thought I heard a young man morn today.

I thought I heard a young man morn this morning,

I can't walk you out in the morning dew today.

Walk me out in the morning dew my honey,

Walk me out in the morning dew today.

Ill walk you out in the morning dew my honey,

I guess it doesnt't't really matter anyway,

I guess it doesnt't't matter anyway,

I guess it doesnt't't matter anyway,

Guess it doesnt't't matter anyway.

Songwriters: DOBSON, BONNIE/ROSE, TIM
(or whoever the hell actually wrote it....)

Let's close, my brethren, with  Laurie Anderson, with balm and condolences to her on the death of her husband, Lou Reed.

["Lou was a tai chi master and spent his last days here being happy and dazzled by the beauty and power and softness of nature," Anderson wrote. "He died on Sunday morning looking at the trees and doing the famous 21 form of tai chi with just his musician hands moving through the air."]

The musical association is again stolen from mi hermano...

Mi hermano y yo... somos.  















© 2013 L. Ryan

Reworked Prose: I Blame Herzl

In January 2009, I wrote a prose post entitled "I blame Herzl." It was a lame attempt to engage.  I decided that I ought to do the same, having advanced so much these past four years, but now in poetry.  Pristine logic, plus, this time, there's food. The remarkable painting is by Erez Vaxman.

Sunday Chowder: I Blame Herzl

 

I made fish chowder

and then we said

these things:

 

"Do the right wing bigots

really think that leftist assholes

cannot distinguish between Hamas

and the deserving

-- overarching --

Question of Palestine?"

 

I wouldn't deign to waste

time proposing an inanity

such as Israel

not having the right

to self-determination,

or to exist.

 

Israel is the King

of de facto

everything,

particularly

of annexation,

so what would be

 

the point?

 

Haddock and cod.

Five Idaho potatoes.

Four celery stalks.

 

Israel is,

de facto.

May Palestine eventually be,

de jure.

 

I blame those peacenik

Ottomans, those opium-toking

he-went-that-a-way Turks.

And the oh-so-benign,

not-to-mention secret

Sykes-Picot

 

incestuous

annexations.

 

I blame the Lame League.

 

A nutty garlic butter roux.

Six carrots.

One huge onion.

 

I would link up 

with some of these right

wing bigoted commentaries,

but then I would have to pretend

to want

to debate. 

 

("Typical left-wing amour propre!"

 

"Yeah, well, still better

than their queer robes

of purple armor.")

 

Beware such winning

and unconsidered repartee!

I gotta stop smoking

that wacky tobacky.

 

Corn, golden, sweet.

Okra, properly done.

Dried slices of poblano peppers.

 

These are tragic times.

 

Those of us not being bombed

or doing the bombing,

let's not subvert the causes

of deserving peoples

because we lack the mental

 

agility to dissect the issues,

 

that is, if we even understand them.

 

I sure don't.

 

Kosher salt.                 (Taste, taste, taste!)

Cayenne.

Huge amounts of fresh ground pepper.

 

I am swayed by the passions

of individual Israelis and Palestinians

and want to planify discrepancy.

 

I belong in a home for the feeble-mindedly optimistic.

 

It should be my job to wash and dress the dead,

then bury them -- in accordance to the prevailing customs.

Winds. Incoming missiles. Available space, and clergy.

 

Fresh dill.

Cream (not much).

Milk.

 

Obviously, competing intransigence

is a waste of the world's time --

backing one or the other

 

purely smacks.

 

We all know the answer lies

in the two-state solution --

in which Hamas can play no role.

So am I to support the occupation

of Gaza in the hopes that when the bullets cease,

Hamas will {poof} be gone?

 

If not Hamas, who will see

to the trapped 1.5 million Gazans? 

 

Your knife skills are key:

Small, even dices.

Be more generous when cubing the fish.

 

The desperation of the Gazans does not resonate in the breast of Mahmoud Abbas.

 

When the League of Nations

had the brilliant idea to divide

 

Palestine,

 

and to screw the Palestinians

by means of that ever-buggering British Rule

 

-- the Mandatory Power that was to be

provisory, transitory,

and every other meaningful -ory --

 

the world chose not to take notice.

 

When we deigned to glance        

around,

we saw Arafat in fatigues,

sporting a weapon

before the United

 

Nations.

 

It was all rather confusing.

 

A light fish stock.

Thai fish sauce (but don't tell anyone).

Organic bitter baby greens at the last minute.

 

And so we have see-sawed back 

and forth through the decades.

The one thing that I have learned

in my in-depth, spirited

study of world

 

conflicts? 

 

There has to be someone to blame.

 

As always, the mise en place is key.

Build the flavors; Do not forget to taste, taste, taste.

Finish with one tablespoon of butter.

 

I blame Theodor Herzl for not having settled on Brazil.

© 2013 L. Ryan

A Day In The Life: Monkey Gland Sauce

Life in a Wheelchair                     

© L. Ryan, All rights reserved

Written July 12, saved for this rainy day.

"this, too, shall pass," opines the man who will ultimately pocket my co-pay.  i want to ask whether i could get some non-biblical, less aphoristic comfort if i paid, say, an extra ten bucks.

"nancy will help you check out and schedule your next appointment," and i steel myself, waiting for it.  it comes, not because i am prescient, but because people in the people-helping killing fields cannot refrain from touching me.  he claps me on the left shoulder.

as most of you know, i don't have a left shoulder, just a mass of infected tissue and the sawed off ends of a clavicle and humerus.

a "clap" differs from a "slap," however, and so he gets a point from me for that bit of restraint. perhaps he remembered as his arm swung down, and he quickly revised the shape of his hand, cupping the palm at the last possible moment.  perhaps he remembered nothing, and that was just the fortuitous highlight of my day.

nancy is efficient.  she does not believe me when i say i do not need an appointment reminder card. my various purses, bags, organizers, and sac-like anythings-with-zippers are littered with reminder cards.  you see "organizers" there in that list, yes?  that's where the appointment goes, should i manage to get my hand to grip a pen, to shuffle the pages of my beloved red moleskine to the correct month and day.

i insult nancy, i am sure, when i leave the card on the counter.  i am equally sure that someone even ruder than myself, will wrench the memory from her mind's grasp within a quarter hour. maybe a dirty old man will ogle her smashed and quivering cleavage.

when you sit in a wheelchair, often times, you go unnoticed because unseen by the persons on the other side of service dividers -- be they counters, or shelves or desks with the added visual obstruction of a computer screen or cash register. however, some locations have customer care and check-out stations situated on an elevated platform, in which case, ironically, their line of sight is positively perfect and people in wheelchairs are no trouble to visualize, no trouble at all.

this is most often the case at a pharmacy window, and the acting party, therefore, a pharmacist.

what fred and i usually witness is a clear visual check, a thought bubble, and then a choice, the choice being to address fred, who is invariably sleepy and biding the time with ill will.  i am the person making the transaction, holding the wallet, the responsible party, but after the visual check, the thought, the choice, i clearly cannot be competent.

once that conclusion is writ in the over-the-head bubble, i used to give in.

fred and i are fans of the absurd, however, being absurdity's familiars.

the chef-jacketed pharmacist asks fred a question. fred asks me the question, loudly. i yell the answer to fred.  fred screams it at the purveyor of goods, who adopts the universal look of offended sensibility -- a slight jut to the chin, a supernatural pinch that actually whitens the bridge of a narrow snoot of a nose.  incredibly, though, the precise professional does not switch, does not become enlightened, but continues to address fred, who is awake now and having fun.

"will she be paying with cash or with a credit card?" spits the pharmacist, teeth either gnashing or clenched, it's hard to say.

"i dunno, let me find out," hollers fred.

"honey," screams fred, "will you be paying with cash or with a credit card?"

"what?" i yell.

and so on and so forth.
 
we savor the moment when the credit card receipt needs signing.  that affords us the opportunity for physical comedy, so that we can expand our vaudeville act.  what usually lessens the tension that otherwise might catapult me through whatever tangible barrier separates me from my pill-pushing sparring partner -- a pane of glass, usually, and a row of neti pots -- are the other customers, because you know that we bring enterprise to a screeching halt.

they're usually laughing like fools.  we try to straighten up and make our transaction as fast as possible while still being true to our principles -- these folks might just want a tube of lip balm or a condom, but one surly teen also might be picking up an antibiotic for her twelve year old kid brother who is at home, wheezing with congestion, propped up on two pillows, eating tater tots. we don't want to leave such an angry pharmacist in our wake that he mistake a sulfa drug with a first generation cephalosporin to which young benjamin is allergic, thereby murdering a mere child, who had his whole life before him.

no way, not on our account.  not on our watch.

we have other routines.   not too many, as i do not get out much.

one i particularly enjoy employs the opposite approach to the skit methods we rely on when appearing together.  fred doesn't often leave my side when we are out.  i've never asked him to stick to me like a velcro-buddy, but he does, and so serves as a buffer zone, keeping me from people who may inadvertently bump into me or touch me in some way.  the few times that we grocery shop together, though, i try to pull my weight and take on half the shopping list, carrying a basket in my lap for the herbs, rices, and dried beans.

let's say i am perusing various prepared broths, deciding just how lazy a cook i want to be, and marveling at the sodium levels in chicken stock, when a shadow looms and a voice booms:

"CAN I HELP YOU REACH ANYTHING, DEAR?"

once my heart regains its normal rhythm, i turn the chair to face them, and whisper in the smallest of all possible whispers, "no thank you, i don't need any help." and then beam at them, making sure my cheeks are as rosy apples but my eyes, crossed.  on a good day, i work up a smidgen of froth that hangs from the corner of my mouth.
sometimes it goes on and on, as they then proceed to decide what it is i want.  no kidding! whatever it is they choose to plunk into my basket, it comes from the tip top shelf, is usually dusty and sports three different pricing labels.

i whisper something, maybe a line from my fair lady:   "I've a right to sell flowers if I keep off the kerb."

my strange helpmate will assume an expression of profound gratitude has slipped through my foaming vocal cords, and continue in the dance of code, proffering a goddamned slap on the shoulder and a screeching, "YOU'RE WELCOME, OF COURSE.  NOW DON'T YOU EVER, EVER GIVE UP BECAUSE GOD LOVES YOU."

a few minutes later, fred will spot me in the aisle, come to consolidate my basket with his full-sized grocery cart, and ask, bemused -- but in a voice of normal volume -- "what exactly, are you planning to do with monkey gland sauce?"

 

Author notes

please excuse my lack of caps, the moments of ear-bursting yowls excepted, of course.

Engineered Toxin in the Pipeline as Treatment for Chronic Neuopathic Pain

Synthetic Self-Assembling Clostridial Chimera for Modulation of Sensory Functions

Enrico Ferrari †‡, Chunjing Gu †, Dhevahi Niranjan†, Laura Restani §, Christine Rasetti-Escargueil ,Ilona Obara #, Sandrine M. Geranton , Jason Arsenault †, Tom A. Goetze ¶, Callista B. Harper □,Tam H. Nguyen □, Elizabeth Maywood †, John O’Brien †, Giampietro Schiavo ●, Daniel W. Wheeler, Frederic A. Meunier □, Michael Hastings †, J. Michael Edwardson ¶, Dorothea Sesardic , Matteo Caleo §, Stephen P. Hunt , and Bazbek Davletov *†

† MRC Laboratory of Molecular Biology, Cambridge,United Kingdom

‡ School of Life Sciences, University of Lincoln, Lincoln, United Kingdom

§ Istituto di Neuroscienze, Consiglio Nazionale delle Ricerche, Pisa, Italy

 National Institute for Biological Standard and Control, Health Protection Agency, Potters Bar, United Kingdom

 Department of Cell and Developmental Biology,University College London, London, United Kingdom

# School of Medicine, Pharmacy and Health, University of Durham, Stockton on Tees, United Kingdom

¶ Department of Pharmacology, University of Cambridge, Cambridge, United Kingdom

□ The Queensland Brain Institute, University of Queensland, St Lucia, Australia

● London Research Institute, Cancer Research U.K., London, United Kingdom

 Department of Anaesthesia, Addenbrooke’s Hospital, Cambridge, United Kingdom

 Department of Biomedical Sciences, University of Sheffield, Sheffield, United Kingdom

Bioconjugate Chem., 2013, 24 (10), pp 1750–1759

DOI: 10.1021/bc4003103

Publication Date (Web): September 6, 2013

Copyright © 2013 American Chemical Society

*E-Mail: b.davletov@sheffield.ac.uk; Tel.: +44-114-2225111.

ABSTRACTClostridial neurotoxins reversibly block neuronal communication for weeks and months. While these proteolytic neurotoxins hold great promise for clinical applications and the investigation of brain function, their paralytic activity at neuromuscular junctions is a stumbling block. To redirect the clostridial activity to neuronal populations other than motor neurons, we used a new self-assembling method to combine the botulinum type A protease with the tetanus binding domain, which natively targets central neurons. The two parts were produced separately and then assembled in a site-specific way using a newly introduced ‘protein stapling’ technology. Atomic force microscopy imaging revealed dumbbell shaped particles which measure 23 nm. The stapled chimera inhibited mechanical hypersensitivity in a rat model of inflammatory pain without causing either flaccid or spastic paralysis. Moreover, the synthetic clostridial molecule was able to block neuronal activity in a defined area of visual cortex. Overall, we provide the first evidence that the protein stapling technology allows assembly of distinct proteins yielding new biomedical properties.

PRESS RELEASE FROM THE UNIVERSITY OF LINCOLN, October 2013

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

A team of 22 scientists from 11 research institutes, including Dr Enrico Ferrari from the University of Lincoln, UK, created and characterised a new molecule that was able to alleviate hypersensitivity to inflammatory pain. 

The work is featured on the cover of the October 2013 issue of the scientific journal Bioconjugate Chemistry.

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 - now at the University of Sheffield.

Now, by separating elements of clostridium botulinum and clostridium tetani neurotoxins, commonly known as Botox and tetanus toxin respectively, the scientists were able to develop a model to re-join the molecule proteins yielding new biomedical properties, without unwanted toxic effects. 

While the Botox element is able to block neuronal communication – and therefore pain signals - for months, the tetanus component targets the engineered toxin to the central nervous system, rather than stopping at exterior neurons that are the normal target of Botox. The combination of the two effects is of great interest for neuroscience and can be applied to the treatment of several neurological disorders, particularly chronic pain conditions.

Botox and tetanus neurotoxins hold great promise for clinical applications, but since they are the most lethal proteins known to man, their paralytic activity was a stumbling block until now.

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.”

Preliminary data on animal models has now been collated at University College London and future clinical trials are expected to fully characterise the new bio-therapeutic.

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, in a similar way that Botox injections for removing wrinkles last for several months. Engineering this kind of toxin has many uses and would be a major improvement in the quality of life for those people who suffer from chronic pain. It is very exciting to know that a protein you made could be one of the future drug treatments.”

The crux of Dr Ferrari’s research is now aimed at creating a method where more than two protein elements can be combined together and their exact order dictated, which will open up further avenues to explore possible medical uses in the future.

Synthetic Self-Assembling Clostridial Chimera for Modulation of Sensory Functions in Bioconjugate Chemistry, DOI: 10.1021/bc4003103


© 2013 L. Ryan

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

Stolen from "Du Tout et Du Rien," who ripped it off from...

Because it was what I needed to read, I found it.  In French.  A closer inspection reveals that it was translated from its original English -- and first published HERE.

Weirdly, I prefer the translation...

and the owl.

I may not like the piece tomorrow...

but I will still like the owl.

Tel-Que-Vous-Êtes

  

Il existe différents niveaux d'éveil. Il est rare que quelqu'un «se secoue» simplement  hors du rêve sans quelques morceaux résiduels de l'ego laissés pour compte. Dernièrement, ma conscience est allée se concentrer sur un morceau auquel beaucoup tiennent, même sans le savoir. La part de moi qui dit, "vous ne devriez pas être ainsi" ou "vous ne devriez pas agir de cette façon". Vous pouvez voir cela partout. Cela fait partie de ce qui crée le drame humain.

La vraie liberté ne peut arriver tant que vous ne donnez pas aux autres la liberté d'être qui ils sont. Laissez leur la place. Acceptez-les pour ce qu'ils sont. Si vous ne leur permettez pas d'être qui ils sont il y a une résistance à ce qui est.

L’éveil complet inclut de sortir de cette résistance. C’est permettre à tout (et tout le monde) d’être ce qu'il est. Cela ne veut pas dire que vous serez toujours d'accord avec eux, ou même que vous les aimerez, mais vous pouvez les accepter. Permettez.

Cela est aussi vrai pour nous-mêmes. Par exemple, peut-être méditez-vous et vous sentez-vous frustré parce que votre esprit ne se calme pas. Qu'arriverait-il si vous en veniez à vous permettre d'être comme vous êtes, l'esprit occupé et tout le reste? Qu'arriverait-il si vous vous acceptiez comme vous êtes, au lieu d'essayer de vous améliorer, vous changer ou vous résister? Au lieu de cela, laissez-vous juste être comme vous êtes. Faites-en votre pratique. Laissez vous-et-eux- être comme vous-et-eux sont. Il s’agit non seulement de  permettre à la réalité d'être comme elle est, mais de vous amener en un lieu de présence.

Un lieu de véritable liberté.

Profitez de la beauté.

Heidi

testing the reanimated flip video camera: sunday nothings

this is truly a nothing day.  there is some relief of responsibility on my one shoulder, as everyone in marlinspike hall seems to have taken a day... off.  lots of snoozing going on, with bad scary movies in the background.

the flip video camera is in halloween mode -- as the reanimated device. i don't trust it.  so i've been filming nonsense to test its seriousness.

first up, we've buddy, dobby, and the fredster, playing with a : tea light he picked up at the dollar store. don't ask me why.  he muttered something about "romance" just before complaining about his ear hurting again, and falling deeply into an oblivious snore. just before his dive into unconsciousness, i was the party pooper, pointing out buddy's proclivity for biting into things, and not being a fan of documenting feline electrocutions.

and a red-glittered flickering light bulb of a "tea light" has never really done it for me.

next we have an exciting visit with dobby from earlier in the day. he's been the object of "territorial" attacks from buddy, so that's why he is looking obsessively to the doorway.  why he suddenly decided to flop down for a belly-rub, i dunno.  the final shot was all his idea, and is his way of getting me to turn off the camera, of which he is always very aware. dobby misses very little.

my deepest apologies to those of you looking for cinematic masterpieces.

i hope your sunday was as unproductive as mine.

oh, the absence of marmy fluffy butt has to do, in part, with the purchase of a new living room rug, to which she is oddly attached.  in the rhetorical sense.  she is also fond of one of the new chenille throws i bought to replace her rattier one.  and then there's the truth... she and buddy can't share the same space, at least not this space (the bed), without the maine coon defending his "territory" with scary ferocity.

it's a problem.



© 2013 L. Ryan

"Systemic Complications of Complex Regional Pain Syndrome": What You Always Wanted to Know...

courtesy of YouTube channel TheDrexelInterview

Robert J. Schwartzman, M.D -- recently retired from his post as Chair of Neurology at Drexel -- published an article last July that will be a gift, I think, to most CRPS patients who deal primarily with an internist as their Primary Care Physician, or whose care is spread out among local specialists.

While I have known for several years that many physical and mental problems seemingly unrelated to CRPS, in its most restricted and precise understanding, were indeed related, I don't have the knowledge base to explain what I know intuitively.  I've known there was a link between CRPS and the way my adrenal insufficiency presents itself.  Indeed, and without hubris (over such as this?!), I think the fact that I "contracted" CRPS while literally in ICU with an Addisonian Crisis had a profound impact on the eventual severity of my disease -- and the almost complete failure of the HPA axis.  There have been recent really bizarre changes in my red blood cells that I could theorize were due to tissue hypoxia but could never find the words or bravery to vocalize.

Well, please, if you have CRPS and an understanding and willing PCP -- like my fabulous go-to-guy -- send them the link to this article, published in its entirety in the research library maintained by RSDSA.org.  Most of this stuff applies to those of us with longstanding CRPS -- you know, the sexy "intractable" sorts.  It goes a long way to explaining the systemic extensions of the syndrome's influence.

Circulating the article also quells an annoying tendency that I've begun to notice, which is the pronouncement by health care professionals who personify "idiots" -- in lieu of investigating systemic aberrations, related to CRPS or not, they wave their hands and say, "It's probably due to that CRPS thing." Yes, the law allows you to sucker punch these purported professionals and to not be charged with assault.

Really.  It does.

Unless you've decided to not overly investigate health changes that aren't life-threatening, a stance I adopted last December/January, it may be helpful to your overall health to understand the mechanisms of change at work in your body.  And then there is that possibility that all changes are not magically subsumed under the rubrique of CRPS!.  Me, I am getting a DNR tattoo, have the POLST paperwork being prepared, and no longer pray for any reason beyond the intercessionary.

Really.  But that's just my usual cheerful way!

So long as CRPS remains an orphan disease, the data that is collected will simply be part of an imaginary perverse Library of Babel à la Borges.  But perhaps there will be a systematized collection of chart data one day -- certainly, Dr. Schwartzman could not have written this article without such hard work going on in his environs, at least.  You could be a part of that important project and help change the rather grim trajectory of long-term CRPS that now exists.

Really.  It could happen.

Enough of my silly stuff, then.  What's important is that you get this article into the hands of any generalist who is treating your CRPS, as well as into the hands of anyone highly (overly?) specialized, as well, so that from their tree they may view your forest.

TITLE: Systemic Complications of Complex Regional Pain Syndrome 

AUTHOR:  Robert J. Schwartzman, M.D

Department of Neurology, Drexel University College of Medicine, Philadelphia, PA, USA
Email: Robert.schwartzman@drexelmed.edu 

JOURNAL:  Neuroscience & Medicine, 2012,  doi:10.4236/nm.2012.

***** Published Online *** 2012 (http://www.scirp.org/journal/nm)

Available for .pdf download at RSDSA.org:  CLICK HERE



© 2013 L. Ryan

Changement de Sujet

Changement de Sujet (adult childish language alert)

© L. Ryan, All rights reserved

MadKiller57speaks

Elle m'emmerde.

 

Et toi, aussi, si tu continues à faire

et à commettre et -- Dieu, seul, sait

pourquoi -- à m'admettre

sans cesse, 

sans aucun remords,

petit sourire aux lèvres,

cet énorme tas de bêtises,

de  promesses rompues

ce grand panier de pommes

pourries, puantes que tu laisses

tomber au beau milieu 

du tapis -- (en plein cœur

de mon cœur) --

 

malheureusement,

je serai obligée de changer le sujet.

 

C'est pas si loin, ce trajet d'elle à toi :

un clin d'oeil,

un bâillement

un de ces moments.

 

(Vas-y, si tu veux,

connard prétentieux

que tu es,

que tu étais,

que tu es devenu, 

moi, je reste ici --

où je suis

toujours restée -- 

chevrotante,

tout à  fait

tranquille,

tremblante.)

 

Malheureusement, on va être

obligé de te licencier,

de te laisser aller.

 

[au revoir! adieu!]

 

J'ai le droit de le dire, 

le droit de le sentir, 

le droit de te faire rappeler

qu'elle m'emmerde, 

et que toi? Tu es 

dans la queue,

le prochain, le suivant

dans cette crapuleuse 

file d'attente si bizarre, 

si immonde.

 

Fous le freaking camp, déjà!

Espèce de bizarrerie:

Une toute petite tranche 

d'une gouttelette de merde. 

 

"Toi, ma putain de salope,

tu me fais chier

avec tes trucs de merde!"

(Ça, c'est la répugnance

dite en français -- soigné --

chez les bien-elevés,

après le cabernet.)

 

"Hostie! Toi, mon tabarnac 

de ciboire de St. Sulpice,

tu me fais chier en christ!"

(Et ça, c'est la traduction

de mes sentiments

les meilleurs connus

et distingués, comme on les dirait

au Québec ou sur les pavés 

de Trois Rivières, familiers,

chez tout le monde,

en famille, quoi!)

 

"Toi, mon christ, t'es complètement fucked up!" 

(Et cela, enfin, c'est le cadeau,

la beauté des Acadiens qui disent

sans pensée antérieure

la vérité, hors toute conception

de classe --

parce que la vérité, c'est la vérité --

expérience bouleversante qu'elle est.)

 

Et bien, c'est fait,

c'est accompli,

mon changement de sujet.

 

Elle? C'était un inconvénient,

une mouche gênante;

mais, toi, ma foi que

 

tu m'emmerdes.

Author notes

The identities of "elle" and "tu" -- even the "moi," here -- are determined anew, day by day, which does not speak well of my maturity these days.  People, in general, are pissing me off, right and left.  Male, female, transgendered, even.  Plumbers, the tax man, lovers, friends, family, animals, contest runners, contest contestants, penis-brains, women who fall down screaming when running from ogres, poets, folklorists, anyone is fair game.  Remember, too, that French, as in most Romance languages, all nouns have gender.  So my inflamed and inflammatory "elle" might refer to the television or the toilet  as easily as Sarah Palin or Hillary Clinton.
My French, especially my cursing, is very rusty, so please feel free to openly and gleefully correct and instruct.

Brown Pride: Congratulations Cain Velasquez!

It's belated... a huge congratulations to Cain Velasquez for his dominating win over Junior dos Santos, a TKO in the fifth round.  That was the definitive rubber match, as evidenced by JDS' face afterward.

I am less of an MMA fan than in years past but my interest has been renewed by this year's TUF, in which the women are putting on a great show and taking many of the guys to school, in terms of aggressiveness, technique, endurance -- perhaps not so much in maturity, but you can't have everything.

Just to let Dana know a few things, as I have the man's ear, dontchaknow?

Please don't put Roy Nelson on the television again.  Until ____________________. You fill in the blank. Clue:  It is not "Until Roy can quiver for the entire 15 minutes."

Is Steve Mazzagatti still on the UFC payroll?

Could you add a "talking" penalty to anything having to do with Frank Mir?

As for Bellator's November match-up of Tito and Rampage? Puh-leeze.  It makes me sad.  It makes me cry. It does not inspire that warm pay-per-view feeling (but then, nothing does...).

To cheer myself up (and Bianca "The Octagon Nightingale" Castafiore), here's a visual of the heavyweight champ.  Ahhhh.

From KONews

For Nils Hulth

Nils, my email bounced back to me as you have apparently gone on medical leave.  I hope you see this and find it of some use.

On Wed, Oct 16, 2013 at 3:16 AM, Nils Hulth wrote:

If you would chose one treatment in the 3-6 month window (outside physical therapy) to fight for to get, which one would you chose?

I do not know if that question is possible to answer, but I thought I could just as well try.

Many, many thanks in advance,

Nils

Hi Nils,

I apologize for not answering immediately.

Please understand that I am a fellow CRPS/RSD patient and not a health care professional.  The very best thing you can do is to find a Swedish neurologist as well as a Pain Management Specialist experienced in treating CRPS.   I know that this is difficult, but I also know that there is more progress being made in Europe than in the United States.

Some possible sources for you to call, who, if they cannot help themselves, can probably tell you where to find what you need:

Frank J.P.M. Huygen MD PhD 

Professor in Anesthesiology 

Director Pain Treatment and Research Centre 

University Hospital Rotterdam 

The Netherlands 

PO Box 2040 3000CA Rotterdam 

Tel +31107034906 

Fax +31107035184 

f.huygen@erasmusmc.nl 

Neuro-Rehabilitation Centre Medical center:

Mats Andersson
Verksamhetschef

Hans Lindsten

Medicinsk chef, Neurologisk klinik

Per-Åke Ridderheim

Medicinsk chef, Neurokirurgisk klinik

************************************************************

You might also consider calling the European Federation of Neurological Societies to ask for a good recommendation.  Their contact information is:

European Federation of 

Neurological Societies

Head Office

Breite Gasse 4/7

1070 Vienna, Austria

Tel.: +43 1 889 05 03

Fax: +43 1 889 05 03 13

E-mail: headoffice@efns.org

They also have branch offices in Florence and Prague.  More specifically, here is some info on their committee that addresses "neuropathic pain":

EFNS Scientist Panel Neuropathic pain/ ENS Sub-Committee Pain

In light of the foundation of the European Academy of Neurology in June 2014, this EFNS Scientist Panel and ENS Sub-committee have already merged and are fulfilling their tasks together.

This panel/ sub-committee is dedicated to promote knowledge on the pathophysiology and treatment of neuropathic pain.

Attal, Nadine (MD)
Department of Pain Treatment
Hôpital Ambroise Paré
9 Avenue Charles de Gaulle
92100 Boulogne-Billancourt, France
Show on map...
nadine.attal@apr.aphp.fr

Schestatsky, Pedro (MD)
Rua Ramiro Barcelos 2350 9th Flo
90035-000 Porto Alegre, Brazil
Show on map...
pedro.schestatsky@gmail.com

As for my personal knowledge of how to treat CRPS at an early stage -- this is when "blocks" can help the patient overcome the pain enough to participate in INTENSIVE physical therapy programs, which have been known to be curative when embarked upon during this window of opportunity.  It means training yourself to work very hard while feeling a lot of pain, but it may very well save you from a lifetime of disability and suffering, so I'd say it is worth it!  It's important that your Physical Therapists be well-trained in CRPS, as some "usual" techniques are contraindicated. Yes, I know you requested "outside Physical Therapy," but at this stage, it truly is your best chance.  You must be in tremendous pain and the thought of pushing the limits of that pain can be terrifying -- that's why you need both the neurologist with experience and an anesthesiologist/pain specialist with experience to help you get through it, while starting on some pharmaceutical treatments, perhaps even ketamine infusions.                                                                                                                                                                                    Above all else!  I would give this reference to anyone treating you, and I would become familiar with it yourself, as I have found it to be the MOST HELPFUL INFORMATION out there!  These are the Clinical Treatment Guidelines written by two of the best CRPS doctors in the United States (Dr. Anthony Kirkpatrick, with assistance of Dr. Robert Schwartzman): http://www.rsdfoundation.org/en/en_clinical_practice_guidelines.html                                                                                                                    I apologize for the weird formatting, I don't know what my email is doing!  I WISH YOU MUCH SUCCESS AND IMPROVED HEALTH!  Until such time as you can get the best care, and make your choices on how to proceed, I CAN advise you to try to keep moving, in spite of the pain, and to try home efforts at "desensitization," such as putting your feet in buckets of rice grains (use your imagination!).  It's important to get your pain levels down to a point where you can manage to use your feet as much as possible -- and I do understand what strength of character and will is required to do that.  I believe in you, and I believe you can do it.  One word of caution: do not use ice on your feet, even though it may feel good, it can be harmful.  Please stay in touch and let me know if I can be of help -- Bianca/profderien