List of Doctors/Organizations Providing Ketamine Treatments for CRPS / RSD

This list was current as of April 2011, when it was originally published. Please help me update it by leaving a message detailing new clinics, hospitals, and doctors who are providing subanesthetic Ketamine treatments for CRPS / RSD -- also let me know, s'il vous plaît, about any errors in the current listing.  Thank you, Sweet Readers!


Doctors/Institutions Providing (Subanesthetic) Ketamine Treatment for CRPS / RSD
STATE   CITY   DOCTOR   ORGANIZATION   PHONE   WEBSITE/EMAIL

CA Los Angeles Thomas Leverone 310-209-6500 ketaminetherapy@gmail.com
CA Los Angeles Joshua Prager Center for Pain Rehabilitation 310-264-7246 paindoc@ucla.edu
CA Los Angeles Linda Rever USC Pain Center 323-442-6202 rever@usc.edu
CA La Jolla Nancy Sajben Scripps Memorial 858-622-0500 oral Ketamine
CA Santa Anna Lawrence Miller 1450 17th St, STE 200 714-953-6000
CA San Francisco SF Kaiser 415-833-0095
CO Univ. of CO Alan Brewer 720-848-1970
DC Dr. Chin Geo. Washington Hosp. 202-715-4599
FL Hollywood Dr. Kaufmann Joe DiMaggio Children's Hospital 954 360 6383
FL Sarasota Doanld Erb, DO Institute for Advanced Medicine 941-917-5111
FL Tampa Anthony Kirkpatrick 813-435-8206 www.rsdhealthcare.org
GA Atlanta Erik Shaw, D.O. Shepard Pain Institute http://www.shepherd.org
IA Des Moines Steven Quam,DO Metro Anesthesia and Pain Management 515-221-9222
IL Palos Park Renata Variakojis 708-631-5550
IL Chicago Timothy Lubinow Rush Univ. Med Cntr 312-942-6631
IL Rockford Medical Pain Mang. Serv 815-397-8400
KY Louisville Christopher Nelson Bluegrass Pain Cons. 502-423-1021
Kas Leawood Dr. Simon Mid-America Physiatrists 913-599-2440
MA Boston Arnold Pain Center 617-278-8000
MA Boston Christine Peeters-Asdouria Beth Israel 317-278-8000
MS Jackson Kenneth Oswalt University Pain Management 601-984-5950
NC Winston-Salem James North Carolina Pain Institute 336-765-6181
NE Hastings Mark Brosnihan/John Dungan Manny Lanning Mem. Hosp. 402-463-4521
NJ Marlton Philip Getson 856-983-7246
NJ Morristown Edward Zampella Atlantic Neurosurgical Specialists 973-285-7800
NJ Camden Pain Management 856-983-7246
NV Carson City John Di Murro 775-841-4057
NY NYC Vadim Kushnerik Downtown Hospital 212-312-5247
NY Dr. Durkin 631-638-0800
NY NYC Seth Waldman Hosp. for Special Surgery 212-606-1015
NY/DC/VA Nameer R. Haider, MD see website www.killpain.com
NY NYC Ron Hertz Roosevelt Hosp. 212-523-6357
NY Syosset Northshore Hosp. 516-496-6506
NY Stony Brook Brian Durkin, DO Stony Brook Hospital 631-638-0800
OH Mayfield Hgts. Teresa Dews Hillcrest Hosp 440-312-8599
OH Centerville Amol Soin, MD Ohio Pain Clinic 937-434-2226
OK OK City Jack Marshall 405-775-9355
PA Bryn Mawr Matthew Kline Center for Pain 610-527-9500
RI Pawtucket Pradeep Chopra, MD Interventional Pain Mang, Ctr 401-7294985
TX Houston Everton Edmondson Interventional Neurology 713-797-1180
TX San Antonio Kaleb Shaw, MD Univ. of Texas, San Antonio 210-450-9850
UT Salt Lake City Andrew Tallbutt Life Tree Pain Clinic 801-261-4988
WY Casper Tuenis Zondag Neuroscience Center 307-265-7246
WA Yakima Waters Edge Pain Relief Institute 509-574-3805
New Zealand Aukland Greenlane Hospital (09) 638-9909

4/25/2014 addendum:  Please remember that the textual stuff below was painstakingly typed wayyy back in April 2011, hence some oddity.  For instance, Dr. Schwartzman has [alas!] retired...

*I cannot vouch for what you'll discover upon contacting the individual doctors and institutions listed above.  I can verify that this list is NOT complete -- for which we should all be more than a little bit grateful!  I say that because I know of several exclusions from my area -- exclusions that are completely warranted by the less than impressive approach being taken by those excluded!  For instance?  Well... the local doctor whose approach to the ketamine infusion is to LEASE an infusion machine to the patient, toss in an i.v. or PICC line, and send the patient home with bags of ketamine... That's right, you can do your ketamine treatments in the privacy of your own bedroom!  Oh, and the cost is as attractive as the "protocol" -- beyond the insertion of a line and the leasing of a pump -- it's...
FIFTY DOLLARS. 

Personally, by excluding that particular physician from this list, the list maker proved his bona fides!

You'll note some more obvious things, like the absence of Dr. Schwartzman of Philadelphia (Neurology Chair at Drexel). I can think of numerous reasons why that might be so, first and foremost that he has more patients and potential patients than your average bear, and second, that he may wear more the mantle of researcher and academic at this point. Mostly, though, I don't know. He is easy enough to find, as are the details of his protocol.

A word about the Schwartzman protocol: It is a research protocol, and therefore is not subject to any adjustment. The results need to proceed from a process that is double-blind and placebo controlled -- reproducible, ethical, heavily monitored and so on.

Uh-oh.  I feel a sensation of mounting bile.  Perhaps a moderate rant...
I am fed up with the CRPS / RSD patient culture -- online, at least. I should not have strayed from my neurologist's longstanding advice not to join online CRPS/RSD "support" groups. A few weeks ago, I found a group fairly experienced with ketamine, joined, shared my "story" (de rigueur), but mentioned prominently, and twice, that I did not wish to debate ketamine protocols, as I am in the position of using what is available to me. That I am unable to swoop into Philly on a private ambulance plane, "Dr. S" having dropped whatever insignificant thing he was doing to meet and escort me around his facility, does not mean that I am not invested in getting well. That I am no longer pursuing inclusion in the "coma" treatment studies does not mean that my efforts to beat "the monster" are either half-assed or half-hearted. (I am pretty sure, as are others, that it would kill me.)

Yes, despite declaring the ketamine protocol debate off limits -- that's all most people came back at me with... Not to say that there weren't any who attentively read my post and responded thoughtfully and with a clear intent of being... you know, *supportive* -- there were. Two. Two people. One is about as frazzled as I am, and we are enjoying behind the scene banter. It's a case of instant recognition of one's self in the other -- I'm very comfortable with her.

And it occurs to me that I pulled on her exactly that with which I am charging the Protocol Protectorate!  The difference was time and place -- we had at least perfunctorily "met," and we were communicating privately. She wanted to pursue a treatment for whom the only known advocate is a very shady doctor (*cough* *sniff* dr. H *achoo* in Florida *sneeze*), now retired but still in the business via an equally shady website and -- I innocently and unknowingly surmise -- some longstanding system of kickbacks. If folks will do just a bit of due diligence, they'll discover that *cough* *sniff* dr. H *achoo* in Florida *sneeze* did time for Medicare fraud. In a different state, a bit more to the north. Starts with a V.

So I spoke up and posed some rhetorical doubt.

It turned out that, in the interim of our communications, she had stumbled on some less than savory details on her own. She was doing what needed doing and I felt relieved. God only knows how many desperate people have fallen through the cracks, lost to these assholes armed with medical licenses.

But I have been through this process -- constant guarding against people with no aim other than fleecing patients so desperate for relief that they will believe the most amazing crap -- and it is tedious. Mind- and heart- numbing.

What did I expect from the group? What help could they realistically have been?

I wanted to know what, if anything, I could do to optimize the benefits of my treatments. There was only one clear response and it was buried in a bunch of condescending advice for the neophyte, and full of "Dr. S" this, and "Dr. S" that... In order to participate in his studies, Dr. Schwartzman requires that patients be off most meds, and all opiates. That makes sense to me... but mostly, it makes sense in his intensive research protocol.

Crud. Let me chat about something else for a moment. I am not completely sure of this -- I saw a video by Dr. Prager of L.A. from about a year ago in which he said the German arm of the coma studies had been shut down. That makes me sad even though I understand the forces at work.

It has to do with what happened to Laura Beckett, I believe, and while her situation is tragic, I don't see how "blame" can realistically be assigned or why the study had to be punished as a result. MRSA is everywhere, and I have some experience with contracting it, even in an ICU environment where standards are high. It strikes me as odd, as well, that the work in Mexico continues unabated with barely even a mention of the patient death that occurred there.  The implication in Prager's video is that her inclusion was on a compassionate-use basis, not as part of the research cohort.

It's a darned good thing that I recognize the dangers of knowing-a-little-but-not-much. What would be even better? If I could find more medical professionals to trust, with whom to share the burden of worry. I have a group of trusted doctors but none of them are, or will ever be, CRPS experts. When you have an orphan disease that is not at all sexy in its promise for monetary reward, you also have a disease that doesn't/cannot interest many mainstream treating professionals or fire up research consortia (Big Pharma) with burning passion. CRPS just doesn't have that special cachet that comes from infusions, not of ketamine, but of cash.

On the occasions when I pray, it is almost always in the form of intercessionary prayers -- perhaps the prayer of the pompous, definitely the prayer of the dilettante.

Self-interest is never absent, never far from my lips.

I pray for my local, real, available, and wonderful doctors and nurses. But I also pray for Dr. Schwartzman, Dr. Kirkpatrick, Dr. Prager. I pray for Laura Beckett and for the family and friends of Andrea Gianopoulos. They each own, somehow, a little bit of my wayward soul by virtue of their bravery and by the evidence of their faith. 

It's a rough weekend. I hit a pain cycle starting -- roughly -- Wednesday morning. If you noted my previous erudite discussion of the term and concept of "flare," let me say that I seem to be in the midst of shifting pain types, not just some sort of eastern purification of the pain -- *snort*! Some of it may be due to Buddy the Kitten's claws but I don't see that I can blame it all on the Wee One. Ask me again in a few days.

My anxiety levels hit their peak around 4 am last night. All I seem able to think of is how Monday's ketamine treatment is likely to be my last.



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3 years ago today: Subanesthetic Ketamine Infusion #2

originally published 3/22/2011 -- republished to honor fred


I'm pretty blue, pretty exhausted.  Can't think of a reason why yesterday's treatment should be behind either of those states, but heck... who knows?

They upped the dose to 90 mg and infused it in about 2.5 hours.  It was not pleasant but I apparently did a good job hiding that from Fred.  The nurse somehow knew I wasn't having the time of my life, and gave me a pep talk at discharge about how finding the right dose takes time and then several treatments at that dose, or higher.  Monique, her name was Monique.

Without saying much, she said a lot.  Like how this may be pissing into the wind because I am starting so long after onset.  Nine years.  Nine years.  Nine years of this.

She wouldn't use the port (that's right -- after all we went through to get it in before the second infusion -- the doctor having said he would refuse to treat me if I showed up without one...) because it was so new, the site very... raw.  It's swollen, bruised, and just not healed at the "edges."  I could see Fred eating his outrage before bending to his book.

Instead of sitting by my side, he sat in the wheelchair at the foot of the guerny, so as to stay out of the way of the nurse and tech, who do vital signs frequently -- like every 15 minutes.  He was beautiful to behold, at least in my tripping mind -- standing out against the bleak fluorescence of the hallway, a silhouette I've come to love, a faithfulness I surely do not merit.

I remember crying. My legs spasming, relentless.  The i.v. tubing, the blood pressure cuff, the oxygen monitor --each thing assumed terrible proportions just by tapping against my skin, each tap scathingly painful. I remember thinking that so long as I didn't open my eyes, I'd be fine.  That's probably why Fred thought all was well, thought I was sleeping through it.  Not so.  Not even close.

I asked for my purse there toward the end.  I had wanted to take a clip of the statue in front of the hospital.  Instead, while completely out of my mind on ketamine, I took a video of the ceiling in my cubicle, the curtains surrounding my cubicle, the empty hall near my cubicle, and...

...the most comforting of comforts, perched in the wheelchair there at the end of everything, my sentinel, my guard -- the best argument, the best reason I know for opening the eyes...

Next week, an even higher dose.  Then, the following Monday, an assessment and decisions.



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A Year Ago: Bed 5, Round 4

first published on 4/12/2011

I had my first opportunity to serve as Ambassador of Ketamine yesterday, a duty that I discharged with vigor, if not honesty.

About a half hour before being escorted to the treatment area, ketamine patients are instructed to stop by the outpatient pharmacy, sidle nonchalantly on up to the counter and hit the pharmacist up for 10 mg of Valium.

I think nonchalant sidling is akin to the skedaddle of the detritus loving Fiddler Crab.

You ask for your Valium out of the side of your mouth;  You cover your purchase with a bag of sour Skittles and maybe some Milk Duds;  You pay your dollar, pop your pill, and go wait to be called for treatment.

So I'm in line, humming, fondling the candy.  There is a guy in a wheelchair taking up a lot of time -- like, they tell him it will be a few minutes before his medication is ready, and he says okay, I'll just wait *here*... but, like, I can't get to the counter because he is entrenched, waiting *there*... 

Jeez, people in wheelchairs think they own the world.

Fred does his clear-the-throat routine.  That doesn't work because, heck, we're in the middle of a hospital where half the population has tubes running down their throats and the sound of raspy retching is the sound of normal.

I finally just call out over the guy's shoulder -- "Yo!  I'm here to get my one-buckValium and to pay for these Skittles and maybe some Milk Duds before I go fall in my K-hole, yo, y'all."

At which point the guy in front of me practically does a wheelie.

"You, too, huh?  This is my first time.  I'm really nervous.  Does it really work?  What are you getting it for?"

Aw, fudge.

I'm nervous, myself, and this is my fourth treatment.  And I am not feeling chatty, or excited, or even vaguely benevolent.

Nonetheless, I proceed to be a fine ambassador of subanesthetic ketamine infusion therapy for intractable pain.  My routine is peppered (and salted) with plenty of "it varies from patient to patient..."

"Is it working for you?  How long does it take before it works?  Is it scary?" And so on, and so forth.  I meet his Blessed Mother, who has blue helmet hair and clearly thinks I might be one of them "drug atticks."  He rolls up his pants to show me his red lobster legs, trying to convince me that his pain is horrible, that he cannot sleep, that he's tried everything.  I tell him he is obviously a cry baby, signal the money-grubbing pharmacist tech, peel off wide, and catch my neatly packaged diazepam on the fly.  Fred tucks the candy into his backpack, I leave an IOU tucked in the Bowel Program For High Quadriplegia aisle (next to the cards and magazine rack), promise to settle accounts "next time," and we leave that big old cry baby and his helmet-headed mama with mouths hanging open, sucking in our dust.

When I am assigned an area back in the treatment room -- Bed 5 -- guess who is put in Bed 4?  You guessed it!  And his mama, too.

Big fat paralyzed cry baby seems to know every doctor and nurse who strolls by... and for some reason, people seemed to be taking their lunch-break power promenades down Ketamine Alley, peeking in at us weirdos and our wheelchairs, canes, catheters, ports, and world-weary loved ones valiantly trying to stay awake as lights and sounds dim, then mute. Fred and I listen to my neighbor bitch and moan as a namby pamby, softspoken, I-think-I-can-help-you type doctor attempts to tweek his spinal cord stimulator so that the cry baby can sleep long enough to have a wet dream. The doctor leaves him with several programs to try and some inspirational thoughts by Jack Handey.

I am the last person to be hooked up, even though I have the largest dose to be given.  As usual, when I start the infusion, ketamine greets me with one of its more dependable effects -- a kind of sepia treatment, a brownish, sometimes greenish, tint or wash that rubs out details and crosses soft edges.  That, and hearing so acute that I perceive Fred thinking of ducking out to grab a sandwich -- and his loud, booming hope for a kosher dill on the side.

Big fat paralyzed red-legged mama's boy cry baby, like many of us, has brought music to listen to in the form of an MP3 player.  In fact, I had spent a fair amount of time during the night making a playlist specifically for the Ketamine Experience, hoping to avoid Jimi Hendrix and the Banner, "Knockin' On Heaven's Door" and stuff like the giggle-inspiring "Illegal Smile."  Me and my 54 songs were ready for Round 4, all negativity purged, insipid pop privileged over mind-bending instrumentals, rock classics, and Mozart.

But now, in the cozy environs of Bed 5, there was this competing roar that I couldn't at first locate and never managed to silence.  That's right -- the cry baby's music (if it can be called that! sniff:sniff) vibrated all over the damned place, bleeding from his earbuds.  His taste in songs seemed to be limited to groups formed by cousins.

I apparently don't rise above a whisper during ketamine infusions.  Fred has to lean in close to hear me and says that I perpetually inquire as to whether or not I am being too loud, and seek reassurances that I am not, in fact, shouting. 

So there was that to contend with -- supersensitive hearing and leaky earbuds.

And yes, once again, I became hyperconcerned about a little old lady who was stashed in the last bed on Ketamine Row.  She was moaning so, and weeping.  Would these people never shut the hell up?

Part of the reason I was late getting started was that they accessed my portacath for the first time. Thankfully, that went fine, despite the nurse's contention that it was still too "infected" to use.  The problem is now relegated to one tiny area of the incision, through which pokes this recalcitrant little stitch that refuses to "dissolve" and be absorbed by my body.  Every few days or so, I clip the ends, and to keep things free of pus, crusty critters, and squishy maggots, first thing every morning and last thing at night, I douse the area with cognac and smear bacon grease over the wound, concentrating on that problematic corner.

Sorry.  That's what I felt like telling the nurse every time she inquired whether or not I was applying neomycin, keeping it clean and covered, etcetera.  It seemed she asked a hundred times and that was before the pharmacy even delivered the right dose of ketamine -- they had prepared a bag of 50 mg when I had graduated to 125, and the time required to correct the error was sufficient for her to worry enough about my site to page the doctor for "clearance" to use the port.

Clearly peeved at having been pulled from his clinic patients, he glared at me (not her, mind you, but me), poked at it meaningfully with an ungloved index finger, and declared it "perfect."  Before dashing back to the crowded exam rooms and stacks of charts, he gave me a short pep talk, even using the word "miraculous" to describe the relief that would be coming my way any day now.  Fred had a sneezing fit in the middle of the doctor's testimony, and I thought I saw the word bullshit fly out of his delicate aquiline nose and dance in the air before diving into his fine linen handkerchief.

If you are dying to know whether I got any pain relief from Round 4 of subanesthetic ketamine, you're not alone.  So am I.

At 4:10 pm, I had no pain in my feet, no pain below my knees.  I laughed, I smiled.  I announced it.  And then it was gone.  No one reacted to my news, so I am not sure whether I actually said it out loud.  Even when I retold the tale on the ride home, Fred didn't think I was serious.

When people describe how heartbreaking it is to have pain relieved only to have it return?  There is no melodrama there.  It really does tear the heart asunder -- bundles of ischemic cardiac muscle fall apart, shred, and twitch in extremis.

To answer the question, then, I don't know.  I might have dreamed it, I might have hallucinated it, but at 4:10 pm, I had no pain in my feet, no pain below my knees.

All I can conclude is that maybe we are nearing the right dose of ketamine... I heard the nurse and the doctor discussing something about adjusting the rate but not the dose, but I am not sure they were talking about me.

 The big fat paralyzed red-legged mama's boy cry baby next to me?  When they inquired about his pain level following the infusion, he crowed -- "Zero!  Zero, man, zero!"

His little blue-haired mama looked confused, but pleased, and announced that they were gonna go get them some Taco Bell.

My next treatment is set for next Wednesday at which time the dose will be 150 mg.




"cocorosie K-hole {independent} music video" uploaded to YouTube by ensnyggflicka on Dec 4, 2006

Tiny spirit in a k-hole

Bloated like soggy cereal

God will come and wash away

Our tattoos and all the cocaine

And all of the aborted babies

Will turn into little bambies

Wounded river push along

Searching for that desert song

And mozart's requiem will play

On tiny spearkers made of clay

Tell my mother that i love her

Martin luther you're an angel

Charming monkey saunter swagger

Drunken donkey limbs disjointed

Your chest is a petting zoo

Mexican pony fucked up shoes

I dreamt one thousand basketball courts

Nothing holier than sports

Dragonfly kiss your tail

Precious robot built so frail

Universe of milk and ember

Your hot kiss in mid december

What's god name i can't remember

Trough the crack eye lovely weather

What's After Awareness?

"On a scale of 1-to-10, my pain was a 15”: No offense, but if people with CRPS don't stop saying crap like this, I am going to assist them in the discovery a new World of Hurt.

It's the declaration of Akron, Ohio native Bob Harris, and I know he means it. I even understand what he is trying to say. But in a highly unUSAmerican move, I do not support his right to say it, much less wish to defend said right with anything remotely similar to my life (such as it is).

See? My cute and sardonic little parenthetical remark is infinitely more expressive of the devastation caused by CRPS / RSD pain than Bob's tired quip. Keep an eye out, I'll probably pull some other extraordinary rhetorical device out of my bag of tricks before this blog post ends.

Harris has been an integral part of the effort in Ohio to pass a bill promoting education and awareness about CRPS / RSD. Sponsored by Senator Eric H. Kearney, Ohio SB 40 was introduced in the legislature in February 2011 and a hearing on the bill was held last Wednesday.

Before you know it, November will be famous as Complex Regional Pain Syndrome Awareness Month in the Buckeye State. There will be festivals, official foods, corporate sponsors, and ribbons, lots and lots of ribbons. Having been through the beginnings of this sort of thing many times here at Marlinspike Hall in Tête de Hergé, may we suggest the following as great ways to start this worthy campaign -- without Bob hemorrhaging from the expense. (In Ohio, People-With-Diseases who spearhead awareness legislation are required to pay all promotional awareness costs for the first year of enactment.)

As a baby festival, but one that will knock your soft, thick, woolly socks off, nothing beats a CRPS Cotillion. Ohioans love a good "patterned social dance" and why not exploit pre-existing manias that also emphasize decorum and aerobic exercise? And proč ne? Why not team up with a group like Sokol Greater Cleveland, which sponsors an annual cotillion to showcase debutantes of Czech and Slovak descent from northeastern Ohio? They've presented over 200 debutantes at their Cotillion Balls -- every Spring since 1972! -- until there was an unexpected dearth (much like the disappearance of the bees. See Colony Collapse Disorder [CCD]) in Czech and Slovak heritaged young women in 2010. Bob can raise awareness in the underserved Czech - Slovak CRPS community and help them move their young ladies at the same time.

NOTE to Bob: You may need to post prominent notices attesting to the Separation of Church and Cotillion, else future CRPS Cotillions may not receive their due in terms of federal and state funding. While no one has anything against Evangelical Christian Cotillions, imagine the modesty issues and gender inequities in, say, a Muslim Cotillion, or the refusal of Jewish Hora dancers to form a square. The CRPSers in Utah have been unable to enjoy Cotillion as a means of raising disease awareness and research funds due to the well-known gush by Prophet Joseph in his journal entry of January 23, 1844: "There was a cotillion party in the evening at the Nauvoo Mansion. The night was clear and cold."

In Cleveland, there is such religious fervor over the quadrille, that we suggest a good-natured embargo of such events in that urban center.

During the past year, debutantes and ambassadors, representing Holy Trinity and other churches in the Cleveland Metropolitan area, were required to attend two-hour weekly sessions where the primary focus was Bible study and spiritual awareness and development. Participants also attended etiquette classes and countless cotillion rehearsals.... In 1982, Holy Trinity became the first church in the city of Cleveland to present a cotillion where both young ladies and gentlemen prepared themselves to be brides and grooms of Christ. As in the past, the highlight of the cotillion was the Bow of Grace and Humility and the Walk of Faith Promenade which was beautifully staged by Actor/Choreographer Michael Burns.

Anyway, yeah, give the CRPS Cotillion a try, and don't forget to use the Cash Bar as a fundraiser -- another reason to push the secular angle. People get good and thirsty after just a few minutes of complicated dancing.

Official Foods: Here in Tête de Hergé, we have a tradition of spelling things out with our novelty food items, but have noted that "CRPS" can sometimes create some furrowed brows among our monogram munchers. And Bob, since it is important to marry a region with its food preferences, at least in the beginning of food-based disease-awareness campaigns, you'll want to do some careful research with the assistance of your best Foodie friends.

I've learned a few things that might help. Tomato juice is the official state beverage. (I love that!) Lycopene, bay-bee! Vitamin A! Chromium! Maybe plan an event in Troy, Ohio's Strawberry Capital. "Only blackberries and walnuts scored higher in total antioxidant capacity"!

The strawberry is also one of the wonder foods included in the anti-inflammatory diet, and if I am about anything, I am about anti-inflammation. What is your C-reactive protein (CRP) level? Hmm? The great thing about the anti-inflammatory diet is that I happen to love the menu, its freshness, and even if my CRP doesn't budge, I know I'm doing good things for myself as I chow down.

Officially, though, I think the only detail proven beneficial (through studies on the Mediterranean Diet) is the strongly suggested increase in omega-3 fatty acids, as they decrease levels of cytokines. So chill with the omega-6 prepared food junk, and invest in cold-water fish, canola oil and flax, or supplements. !

Having read the text of the Ohio CRPS Awareness Bill, I am really impressed by its up-to-date nature, and that's why I am pretty sure you'll have a winning proposition, Bob, if you focus your food efforts on some aspect of inflammation. It'll be the single most expensive outlay during your year of personal financial support of the CRPS Awareness provisions. Are you a farmer, Bob?

For corporate sponsorship suggestions, we always look to RSDSA for guidance. The organization does not accept advertising on its website but does recognize its corporate friends, such as Cephalon, Endo Pharmaceuticals, Purdue,  Medtronic, and TREND (part of EMGO).

As for ribbons, Bob, they are the bane of my CRPS Awareness existence. Back in the heyday of the AIDS red ribbon, I sported, instead, a small lovely button that read: Fuck the Red Ribbons. Find a Cure. My attitude is remarkably similar in this instance.

Anyway, I *think* that CRPS is officially some sort of orange. Because, I *think*, of all the burning pain, and the association with flame -- so it's gotta be in the orange, red, hot category.

If THIS website is to be believed, then, yes, CRPS is represented by the orange ribbon, which also serves "Self Injury, Leukemia, Multiple Sclerosis (MS), Hunger, and Addiction Recovery."

The latest thing on the scene? Silicone awareness bracelets. Maybe you can slip in a better color, and move CRPS fashion up the A-List, hmm?

One of the articles I read that featured Bob Harris stated bluntly that "[h]is life has devolved into a living hell." How I hate to read that; How I understand that. What brought me so low, so pitiable, the other day (though maybe you did not notice my regression?) was that exact realization. I ceased moving forward years ago, ceased digging in my heels not long after that, as resisting the steady, unceasing pull of the ebbing tide only exhausts and demoralizes.

Instead, I make counter-offers to the universe.

"Okay, Universe, I'll cede You this half-inch of skin, bone, muscle, nerve, and vascular bundles here on my left forearm, plus that whole new section of my scalp. In return, though, You Vicious Bitch, I am going to demand an excellent recipe for eggplant that doesn't reduce itself to an oily mashy mess AND two hours uninterrupted sleep -- a *renewable* proviso. Ha!"

Bob has done something slightly more laudable than my carefully-prosecuted War of the Deal by relentlessly pushing for change through public avenues. This is one of the best "CRPS Awareness" bills I've read. It's better than most just by virtue of not pushing either the misnomer "RSD/Reflex Sympathetic Dystrophy" or the bad explanations attached to that misnomer. It is distressing to still read the old, tired [WRONG] explanations for how CRPS works -- insofar as we know, of course -- because this reflects the status quo within the medical community. Yes, it is a little bit of trouble and it takes a little bit of time to delve into the real disease mechanisms rather than repeating easy inaccuracies about "the sympathetic nervous system run amok," but that's a level of awareness we ought to be able to assume with health care professionals!

So a great big congratulations to Bob on his good work, with hope that an approving vote happens soon. It's a shame he has to foot the bill for that initial year of societal education about the disorder. Someone should pass a law...

Oh, and puh-leeze, Bob -- a pain score of 15 on a 1-to-10 scale makes no sense.  It just doesn't.

Fond regards,

The Gang at Marlinspike Hall





Here is the text of Ohio SB 40:

A BILL
To enact sections 5.2267 and 3701.137 of the Revised Code to designate November as "Complex Regional Pain Syndrome Awareness Month" and to require the Department of Health to include on its web site information regarding the syndrome.


BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF OHIO:
Section 1. That sections 5.2267 and 3701.137 of the Revised Code be enacted to read as follows:
Sec. 5.2267. The month of November is designated as "Complex Regional Pain Syndrome Awareness Month" to promote public awareness of complex regional pain syndrome, also known as reflex sympathetic dystrophy syndrome.
Sec. 3701.137. (A) As used in this section, "complex regional pain syndrome" or "CRPS," also known as reflex sympathetic dystrophy syndrome, means a debilitating and progressively chronic syndrome characterized by severe burning pain, pathological changes in bone and skin, excessive sweating, tissue swelling, and extreme sensitivity to touch.
(B) The department of health shall include information on its internet web site to promote complex regional pain syndrome education in a manner that enables individuals to make informed decisions about their health. The information on the web site shall include all of the following:
(1) Emerging research regarding the pathophysiology of CRPS;
(2) The risk factors that contribute to the manifestation of CRPS;
(3) Available treatment options, including the risks and benefits of those options;
(4) Information on environmental safety and injury prevention;
(5) Information on rest and the use of appropriate body mechanics;
(6) Information on the availability of diagnostic, treatment, and outreach services for CRPS;
(7) Information concerning any other factors or elements that might mitigate the effects of CRPS.
(C) The department shall notify boards of health, hospitals, clinics, and other health care providers about the availability of information concerning CRPS on the department's web site.
Section 2. Section 3701.137 of the Revised Code, as enacted by this act, shall take effect ninety days after the effective date of this act.
Section 3. (A) As used in this section, "complex regional pain syndrome" or "CRPS" has the same meaning as in section 3701.137 of the Revised Code.
(B) The General Assembly finds and declares all of the following with respect to complex regional pain syndrome:
(1) CRPS occurs in five per cent of all cases of nerve injuries.
(2) CRPS is thought to be a neuropathic pain syndrome that generally occurs at the site of a minor or major trauma injury, but may also occur without an apparent injury.
(3) While the cause of CRPS is unknown, both the peripheral and central nervous systems are involved.
(4) The syndrome is unique in that it simultaneously affects the nerves, skin, muscles, blood vessels, and bones, and if untreated, can result in permanent disability and chronic pain.
(5) CRPS is often misdiagnosed because the syndrome is either unknown or poorly understood. The prognosis for patients suffering from CRPS is generally much better when CRPS is identified and treated as early as possible.
(6) If treatment is delayed, CRPS can quickly spread to an entire limb and changes in bone and muscle may become irreversible, resulting in limited mobility, atrophy of the muscles, and eventual permanent disability.
(7) Since a delay in the diagnosis or treatment of CRPS can result in severe physical and physiological problems, and early recognition and prompt treatment of CRPS provides the greatest opportunity for recovery, it is in the best interest of the public to require the Department of Health to include information on its internet web site pursuant to section 3701.137 of the Revised Code to educate both individuals and medical professionals regarding this debilitative condition.
Section 4. This act shall be known and may be cited as the "Complex Regional Pain Syndrome Education Act."




State Fiscal Highlights
The bill requires the Ohio Department of Health (ODH) to post information on its
web site to promote complex regional pain syndrome education. The bill specifies
what the information is to include and requires ODH to notify boards of health,
hospitals, clinics, etc. about the availability of this information. Costs would likely
be incurred for the review of these educational materials, the posting of the
materials, and notification to the entities previously described. ODH estimates the
cost to be between $500 to over $1,000 in the first year. In subsequent years, there
could be negligible costs related to updates to the materials and web site.

Going up, again.

Repost from 7/22/2010 as recent events have resurrected The Elevator Dream. Not the act of dreaming, of course, because that would imply sleep. No, what has brought the demons back, today, is my need of money. How crass, you may be thinking. No luck with that Gratitude Journal, huh? There's nothing crass about needing money and being too ill to work, too disabled to labor, too unreliable to front a classroom. I know the party line. I know I am blessed to have private long term disability insurance. In the world of blessings and gratitude, hell, I am touched by grace just to be alive. Yet there are days, even whole years, where my inability to effect financial change drags down my health, my soul, my family's health, my family's soul. Somewhere along the line, I bought into the crap that disabled sick people are throw-aways, that I am a throw-away. I may live, but I may NOT live well.  I may live, but to others' standards.  People are deciding my relative worth every day, in ways I am only now beginning to understand.

Left to certain political audiences, I don't merit life, even.


And as I am less and less inclined to worship at the correctness altar -- even with all its delectable old men's wrinkled butt lined up at a kissable level, at the worship ready -- my "options" will soon be limited to a point that will, definitively, take my breath away.

Grader Boob was informed today that he'll be unemployed next semester; 
Fred needs cash to tend to very important Fred-things; 
 Bianca needs a new pair of shoes; Miss Marmy Fluffy Butt prefers the more expensive litter; 
and Buddy the Kitten has decided to be a Maine Coon and will not stop growing for at least three years. 
These are people [well, mostly people] to whom I want to turn
 in my *fullness*, not this perpetual emptiness of almost-can.  


As I sought to relax, it was, unfortunately, the screeching Dr. Sween who provided the audio portion of
 my mental exercise, and I found myself wanting to screech back.  
If putting up another repost keeps me from breaking into full-screech mode tonight?  Small price to pay to get to tomorrow, sane.
 I've got to get out of this damned elevator. 
  

Chuckle.

Remember my recent post on the IASP and the movement toward an improved instrument of diagnostic criteria for CRPS? No?  Well, you can read it here.

These optimistic good folk are at it again, as they now take on "wait times." May their optimism collide with reality in a non-distant future!  Blessed are these forces, tasked with improving our lot!

Give their latest a quick read: The International Association for the Study of Pain Task Force on Wait-Times.

Weary giggle.

Weary sniff.

Yes, as usual, I confront the helping hands of scientific task forces and medical recommendation-makers with my own effed-up brand of real and actual appreciation, spiced with frustration and a dash of jealous resentment.

I appreciate and do my best to broadcast all progress, doing due diligence, working to stay openminded when the work challenges my beliefs, trying to stay humble and happy when the researchers and medicos arrive painstakingly at what seems so very obvious.

In my world, the obvious does not have to undergo the rigors of proof.

I cannot deny the surge of anger I feel, knowing how the system that now teeters and totters its way toward progress, totally let me down back when I needed clear diagnostic criteria and some guideline hammering home the need for quick diagnosis and faster treatment. At least these bitter moments are fewer now, more quickly suppressed, and almost completely consigned to my sleeping hours.

So...you want to know the recommendation from the IASP regarding level of alarm and desirous wait time in new CRPS cases?

Are you sure?

They classify a new case of CRPS as "Most Urgent."
They recommend a wait time of no longer than "one week."

Mwa ha ha!

Having had a "classic presentation," which politely presented itself in a hospital setting, even, you'd think I would have had a great shot at early, correct diagnosis, or, at least, a correct early referral to an appropriate specialty -- neurology or pain management.

Well, of course, I did.  And I did not, as well.

Unfortunately, the hospital (with its specificity of place, persons, and situations) was the direct cause of my CRPS, and so: Lo! Hark! Why am I still surprised to realize that "it" consciously, and with premeditation, condemned me to a life of pain and disability?  So what if they successfully deferred my diagnosis for over 19 months?

I managed to put the details of my CRPS story in a blog post recently.  It may or may not clarify things were you to read that first!

I still dream dreams of being in the elevator of one of the Doctors' Buildings attached to the hospital, on my way to... I don't know where. I am studying the buttons, trying to remember what floor I want. Slowly, I become aware of someone else in the elevator, someone whose white coat is visible out of the corner of my eye.

It is, most often, Dr. Sween. That's kind of not fair, as all he did was obstruct my treatment and -- aside from that little bit of malpractice -- abuse me, emotionally. He told me his tale of woe -- how his department had to suffer the indignity of a state-level investigation because I had the unmitigated gall to report a Sentinel Event that went unreported by a half-dozen doctors, dozens of nurses, and the entire SJHA hospital administration. He scoffed at me when I began to cry over the fear I had of the future -- no possibility of ever teaching again, ever earning my way, supporting my family. It had not dawned on me, then, that I would suffer physically forever and anon. It had not dawned on me precisely because my experience precluded the possibility for that much pain to endure. Who'd a thunk it, outside of a medical professional or two?

Courtesy of The Joint Commission:

A sentinel event is an unexpected occurrence involving death or serious physical or psychological injury, or the risk thereof.  Serious injury specifically includes loss of limb or function.  The phrase, "or the risk thereof" includes any process variation for which a recurrence would carry a significant chance of a serious adverse outcome.  Such events are called "sentinel" because they signal the need for immediate investigation and response.

Sween yelled that there was no way I had suffered an adrenal crisis due to a failure to premedicate (also intra- and post- medicate, but I don't want to seem picky).  It just wasn't possible and anyone who thought so did not know what they were talking about.  And, certainly, the person ill-mannered enough to actually go into complete adrenal failure was a person to be dismissed and ignored.  As soon as the nitwit navigates his way out of cardiac and kidney failure, squeezes by the dangers of that hospital-acquired infection, 'n his heart rate sees the underside of 160, that is...

Of course, my mind wandered to my endocrinologist, but I am sure that's not whom he meant!  Not the doctor who came in one night -- a few weeks after the initial failure to medicate -- and found me "altered" enough, and complaining of those vague, ridiculous symptoms (weakness, diarrhea, lower back pain, craving salt) to warrant ordering an immediate cortisol level... and found a level of .05 mcg/dL. That's POINT ZERO FIVE.  That's right, he documented another failure to medicate -- the one that you swear has no discernible impact on adrenal function -- and then he documented the result.  We keep that lab result in archival preservative materials, and the Cistercians-Next-Door are guarding it with the same dedication they bring to the protection of Jesus' Foreskin, their greatest relic.

So *bleep* you, and your department, Dr. Sween!  Your discomfort at being investigated came and went;  Your means of livelihood are intact;  Nothing too bad happened to you. You are the SJHA Poster Boy!

*Bleep* you.  And *bleep* your Mama, too.  How you loved to tell me how you loved teachers.  "I come from a family of teachers.  I know how hard you work!"  No problem loading me up on ungodly amounts of Oxycontin -- but see that I was diagnosed and treated in a timely fashion for a severe and disabling neurological disorder?  Hell, no!

Next, I catch a glimpse of a white coat so starched that it looks to be of marble, a coat more brilliantly white than... well, white. It always turns out to be Dr. Kelman, the doctor most likely to form opinions according to the direction of the prevailing breeze upon his spittle-drenched index finger. Truly a bad doctor. I really mean that. Dr. Sween? He is capable of being a superb doctor. It's basically his choice. Dr. Kelman? Poor thing, he can't help himself.  Plus, I believe he may be a sociopath. I'm not entirely sure about that yet.

Almost, but not quite.

As the neurologist, it should have been evident what he was dealing with -- an emergent case of CRPS. ("Classic." "Textbook." That is how the neurologist who did make the diagnosis described my case, 19 months later. There was nothing difficult or bizarre in my presentation.)  Doctor Kelman, though, is not in tune, not up with, such medical niceties... but man-o-man, is he ever atune to the niceties of MedMal law and knows to whom he owes allegiance. In case you are wondering -- he was the mouthpiece for the hospital. The sequalae I suffered after a totally preventable Addisonian crisis and a fall in ICU that fractured several bones, concussed my one head, and introduced weeks of internal g.i. bleeding, etc.? They were laughable (I think that because he laughed...) and due to "emotion." My left hand was in the shape of a claw, spasming, too painful to touch... My right leg was in deplorable condition, rotating outward, hugely swollen, reacting to the movement of air with ugly recrimination -- forget how it felt when actually poked or gripped for pulses...

He did not even speak *to* me. Dr. Kelman stood at the foot of my bed -- indeed, he once bumped the bottom of my right foot and laughed at my reaction (in addition to being emergent CRPS, the ankle was fractured) -- he stood at the foot of my bed and loudly proclaimed to the orthopedic surgeon covering for my own wayward specialist, that my problems were emotional and that clearly I had had too much pain medication.

I cannot even work up a respectable "mwa... haaaaaaaaaaa... haaaaaaaaaaaaaa - ah - ah" at the memory of Dr. Kelman.

When it became clear to him that I was not an idiot (which took more time than I like to admit), he tried a new claim. Actually, I guess he never did stop thinking that I was an idiot because his claim was this: "What NEW case of CRPS? Why, you've always had CRPS. I should know, I diagnosed it years ago!"

No, sorry, despite years of reflection, review of records, inquiries made and answered --  I cannot explain what he was hoping to accomplish with that announcement!  Many a brow has furrowed in its wake.  I do, however, have a letter saved -- that I do not remember writing, but which I do like, and like very much. In it, I defend the honor of the Physical Therapist doing home visits with me, a talented young woman who hit upon CRPS almost immediately. When I shared her diagnosis with Dr. Kelman, he started yipping at me like an overexcited little lap dog, saying, among other things: "How dare you question my diagnosis, especially because of some stupid PT who doesn't know anything about anything..." That was my last visit to dear, dear Dr. Kelman. He never took me up on my offer to put his claims of "preexisting CRPS" in writing.  It would have been quite the accomplishment to have diagnosed me with CRPS/RSD years before the onset of any symptoms -- a real diagnostic tour de force.

Oddly enough, the person least often in the elevator of my dreams is Dr. Carson, the orthopod who really should be first in line for any oneiric revenge fantasies. The thought of him still terrifies me enough that I cannot even let the elevator doors close before I panic.  Sometimes my wheelchair is caught in the opening-closing-opening-closing doors, and I am trapped.

I was still in the ICU the day he stood by my bed and told me: "I do not have to fix your leg... really it is an elective surgery, you know, I don't have to do a thing about it." {Large, ingratiating, insouciant smile}

I asked him what would happen to my broken, oddly-angled foot and ankle without surgery;  He laughed. He said, "It would stay like it is now, a perfectly acceptable outcome." {Large, ingratiating, insouciant smile}  That would mean hanging weirdly on the end of my swollen, red leg, unusable?

At the evident horror on my face, and in sagacious fear of a taperecorder: "I will fix it, but I want you to know I don't have to..." More laughter.

Shiver. More shivers.

Oh, I bet you want to know what goes on in my elevator! Well, each man says something like, "Ahem. Hello, Ms. Retired Educator. How have you been doing?" Their voices are not normal. They are castrati: mezzo-soprano, contralto. Kelman, as much a true soprano as Michael Maniaci.

I cannot answer their polite queries, of course.

I have no voice.

The doors close, we go up precisely two floors, and the doors open. I rush my wheelchair through the opening, zig-zagging in my nervousness. This is not my floor but I have to get out of there...

Yes, well.

Not even my dreams are subtle.

As I said, the news in the world of pain management today comes in the form of these recommendations about "wait time" from the IASP:

•Most urgent (1 week): acute painful severe condition with risk of deterioration or chronicity (new CRPS) or pain related to cancer or terminal or end stage illness (acute herpes zoster also requires urgent treatment but ideally should be treated at the primary care level rather than requiring a pain specialist service).


• Urgent or semi-urgent (1 month): severe undiagnosed or progressive pain and risk of increasing functional impairment generally 6 months duration or less (back pain not resolving, neuropathic pain, post surgical or post traumatic pain)


•Routine or regular (4 months): persistent long-term pain without significant progression

PICTURE OF THE DAY

I'm trying to salvage some stuff off the little Flip video camera and realized that one of the seemingly endless cat videos from recent days contained a lovely updated snap of my legs.

So if you've not seen CRPS/RSD (Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy), this is your big chance to ogle my gams.  It's fitting that "gams" refers as much to a school of whales, porpoises, or dolphins as it does to the shapeliness of my extremities.

I'll update with a visual of my hands soon.  Can't have too much excitement going on at one time.

Recent CRPS Research

** LOOKING FOR CLINICAL TRIALS? CLICK HERE, FOR STARTERS **

I'm not feeling much like blogging these days, being about as busy as a body can be hosting Tête de Hergé's most anticipated Pity Party of the 2011 season.  Nonetheless, having run across some interesting newly published research, I did some wicked-fast copying and pasting, cogitating and perusing, and hope that you will find some of this CRPS work helpful and interesting.  I confess to having focused on aspects of this Sucky Disorder that are posing a challenge and raising questions in my life at present:  sensory dysfunction, disorder of body schema, hemilateral sensory disturbances, dystonia, and -- what the heck! -- ketamine induced liver injury!

There is some comfort in noting the many articles and topics being published and discussed -- just not enough comfort to warrant ending the Pity Party.  Maybe come August.  (Actually, ManorFest is about a week away, at which time my rabid navel-gazing will no longer be tolerated around here.  Already, people are strumming their fingers and rolling their eyes at my wailing and cultivated introspection.  I saw a preliminary ManorFest schedule in which I am relegated to working night shifts, exclusively, far from the public eye.  Harrumph.)

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Title
Comparable disorder of the body schema in patients with complex regional pain syndrome (CRPS) and phantom pain.

Author(s)
Reinersmann A, Haarmeyer GS, Blankenburg M, Frettlöh J, Krumova EK, Ocklenburg S, Maier C

Institution
Abteilung für Schmerztherapie, Berufsgenossenschaftliches Universitätsklinikum Bergmannsheil GmbH Bochum, Ruhr-Universität Bochum, Bochum, Deutschland, annika.reinersmann@rub.de.

Source
Schmerz 2011 Jul 9.

Abstract
In patients with complex regional pain syndrome (CRPS) a disruption of the body schema has been shown in an altered cortical representation of the hand and in delayed reaction times (RT) in the hand laterality recognition task. However, the role of attentional processes or the effect of isolated limb laterality training has not yet been clarified.The performance of healthy subjects (n=38), CRPS patients (n=12) and phantom limb pain (PLP) patients (n=12) in a test battery of attentional performance (TAP) and in a limb laterality recognition task was compared and the effect of limb laterality training in CRPS patients and healthy subjects evaluated.The RTs of both CRPS and PLP patients were significantly slower than those of healthy subjects despite normal TAP values. The CRPS and PLP patients showed bilaterally delayed RTs. Through training RTs improved significantly but the RTs of CRPS patients remained slower than those of healthy subjects. In this study an equal disruption of the body schema was found in both CRPS and PLP patients which cannot be accounted for by attentional processes. For CRPS patients this disorder cannot be fully reversed by isolated limb laterality recognition training.

Language
GER

PubMed ID
21739258

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Title
Impaired Hand Size Estimation in CRPS.

Author(s)
Peltz E, Seifert F, Lanz S, Müller R, Maihöfner C

Institution
Department of Neurology, University of Erlangen-Nuremberg, Erlangen, Germany.

Source
J Pain 2011 Jul 7.

Abstract
A triad of clinical symptoms, ie, autonomic, motor and sensory dysfunctions, characterizes complex regional pain syndromes (CRPS). Sensory dysfunction comprises sensory loss or spontaneous and stimulus-evoked pain. Furthermore, a disturbance in the body schema may occur. In the present study, patients with CRPS of the upper extremity and healthy controls estimated their hand sizes on the basis of expanded or compressed schematic drawings of hands. In patients with CRPS we found an impairment in accurate hand size estimation; patients estimated their own CRPS-affected hand to be larger than it actually was when measured objectively. Moreover, overestimation correlated significantly with disease duration, neglect score, and increase of two-point-discrimination-thresholds (TPDT) compared to the unaffected hand and to control subjects' estimations. In line with previous functional imaging studies in CRPS patients demonstrating changes in central somatotopic maps, we suggest an involvement of the central nervous system in this disruption of the body schema. Potential cortical areas may be the primary somatosensory and posterior parietal cortices, which have been proposed to play a critical role in integrating visuospatial information. PERSPECTIVE: CRPS patients perceive their affected hand to be bigger than it is. The magnitude of this overestimation correlates with disease duration, decreased tactile thresholds, and neglect-score. Suggesting a disrupted body schema as the source of this impairment, our findings corroborate the current assumption of a CNS involvement in CRPS.

PubMed ID
21741321

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Title
The Specificity and Mechanisms of Hemilateral Sensory Disturbances in Complex Regional Pain Syndrome.

Author(s)
Knudsen L, Finch PM, Drummond PD

Institution
School of Psychology, Murdoch University, Perth, Western Australia.

Source
J Pain 2011 Jun 22.

Abstract
Hyperalgesia often extends from the affected limb to the ipsilateral forehead in patients with complex regional pain syndrome (CRPS). To investigate whether this is more common in CRPS than other chronic pain conditions, pressure-pain thresholds and sharpness to a firm bristle were assessed on each side of the forehead, at the pain site, and at an equivalent site on the contralateral side in 32 patients with chronic pain other than CRPS (neuropathic or nociceptive limb pain, radicular pain with referral to a lower limb or postherpetic neuralgia), and in 34 patients with CRPS. Ipsilateral forehead hyperalgesia to pressure pain was detected in 59% of CRPS patients compared with only 13% of patients with other forms of chronic pain. Immersion of the CRPS-affected limb in painfully cold water increased forehead sensitivity to pressure, especially ipsilaterally, whereas painful stimulation of the healthy limb reduced forehead sensitivity to pressure pain (albeit less efficiently than in healthy controls). In addition, auditory discomfort and increases in pain in the CRPS-affected limb were greater after acoustic startle to the ear on the affected than unaffected side. These findings indicate that generalized and hemilateral pain control mechanisms are disrupted in CRPS, and that multisensory integrative processes may be compromised. PERSPECTIVE: The findings suggest that hemilateral hyperalgesia is specific to CRPS, which could be diagnostically important. Disruptions in pain-control mechanisms were associated with the development of hyperalgesia at sites remote from the CRPS limb. Addressing these mechanisms could potentially deter widespread hyperalgesia in CRPS.

PubMed ID
21703937

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Title
Fixed Dystonia in Complex Regional Pain Syndrome: a Descriptive and Computational Modeling Approach.

Author(s)
Munts AG, Mugge W, Meurs TS, Schouten AC, Marinus J, Moseley GL, van der Helm FC, van Hilten JJ

Source
BMC Neurol 2011 May 24; 11(1):53.

ABSTRACT:
BACKGROUND: Complex regional pain syndrome (CRPS) may occur after trauma, usually to one limb, and is characterized by pain and disturbed blood flow, temperature regulation and motor control. Approximately 25% of cases develop fixed dystonia. Involvement of dysfunctional GABAergic interneurons has been suggested, however the mechanisms that underpin fixed dystonia are still unknown. We hypothesized that dystonia could be the result of aberrant proprioceptive reflex strengths of position, velocity or force feedback.
METHODS: We systematically characterized the pattern of dystonia in 85 CRPS-patients with dystonia according to the posture held at each joint of the affected limb. We compared the patterns with a neuromuscular computer model simulating aberrations of proprioceptive reflexes. The computer model consists of an antagonistic muscle pair with explicit contributions of the musculotendinous system and reflex pathways originating from muscle spindles and Golgi tendon organs, with time delays reflective of neural latencies. Three scenarios were simulated with the model: (i) increased reflex sensitivity (increased sensitivity of the agonistic and antagonistic reflex loops); (ii) imbalanced reflex sensitivity (increased sensitivity of the agonistic reflex loop); (iii) imbalanced reflex offset (an offset to the reflex output of the agonistic proprioceptors).
RESULTS: For the arm, fixed postures were present in 123 arms of 77 patients. The dominant pattern involved flexion of the fingers (116/123), the wrists (41/123) and elbows (38/123). For the leg, fixed postures were present in 114 legs of 77 patients. The dominant pattern was plantar flexion of the toes (55/114 legs), plantar flexion and inversion of the ankle (73/114) and flexion of the knee (55/114). Only the computer simulations of imbalanced reflex sensitivity to muscle force from Golgi tendon organs caused patterns that closely resembled the observed patient characteristics. In parallel experiments using robot manipulators we have shown that patients with dystonia were less able to adapt their force feedback strength.
CONCLUSIONS: Findings derived from a neuromuscular model suggest that aberrant force feedback regulation from Golgi tendon organs involving an inhibitory interneuron may underpin the typical fixed flexion postures in CRPS patients with dystonia.

PubMed ID
21609429

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Title
Drug-induced liver injury following a repeated course of ketamine treatment for chronic pain in CRPS type 1 patients: A report of 3 cases.

Author(s)
Noppers IM, Niesters M, Aarts LP, Bauer MC, Drewes AM, Dahan A, Sarton EY

Institution
Department of Anesthesiology, Leiden University Medical Center, Leiden, The Netherlands.

Source
Pain 2011 May 3.

Abstract
Studies on the efficacy of ketamine in the treatment of chronic pain indicate that prolonged or repetitive infusions are required to ensure prolonged pain relief. Few studies address ketamine-induced toxicity. Here we present data on the occurrence of ketamine-induced liver injury during repeated administrations of S(+)-ketamine for treatment of chronic pain in patients with complex regional pain syndrome type 1 as part of a larger study exploring possible time frames for ketamine re-administration. Six patients were scheduled to receive 2 continuous intravenous 100-hour S(+)-ketamine infusions (infusion rate 10-20mg/h) separated by 16days. Three of these patients developed hepatotoxicity. Patient A, a 65-year-old woman, developed an itching rash and fever during her second exposure. Blood tests revealed elevated liver enzymes (alanine transaminase, alkaline phosphatase, aspartate transaminase, and γ-glutamyl transferase, all⩾3 times the upper limit of normal) and modestly increased eosinophilic leukocytes. Patient E, a 48-year-old woman, developed elevated liver enzymes of similar pattern as Patient A during her second ketamine administration and a weakly positive response to antinuclear antibodies. In a third patient, Patient F, a 46-year-old man, elevated liver enzymes (alanine transaminase and γ-glutamyl transferase) were detected on the first day of his second exposure. In all patients, the ketamine infusion was promptly terminated and the liver enzymes slowly returned to reference values within 2months. Our data suggest an increased risk for development of ketamine-induced liver injury when the infusion is prolonged and/or repeated within a short time frame. Regular measurements of liver function are therefore required during such treatments. During repeated ketamine infusion for treatment of CRPS1, three patients developed liver injury probably allergic in nature.

PubMed ID
21546160

Changing the Channel: Court TV and Two Abstracts

I've never been a Court TV junky -- mostly because, you know, I've been busy being some other kind of junky -- Mwa ha ha ha!  Sorry, Beloved Readers, that's Street Drug Humor, something at which I am fantastically adept but have kept hidden as an attribute.  Now, though, I've decided not to hide my light under a basket. A bushel.  A bushel basket. Or whatever.

No, I am not suffering from Hinky Methadone Withdrawal.  What I am suffering from is this twit of a woman, this Casey Anthony person upon whom we are wasting such incredible resources of money, time, and emotion.  Yes, my television is tuned to her first-degree murder trial in Florida, where she is accused of having killed her two year old daughter back in 2008.   

Change the channel, you say?

Oh.  Right!

If I can redirect the miscued energy of a kitten, surely I can train myself to change the television channel -- even {gasp} turn the machine off.  Let's do that, then, and see what happens.

Why, look!  Here are some CRPS updates that I've failed to pass on.  Oh, and there is a Pink Elephant hanging from the ceiling fan!  (Just let me know when you've had enough Hinky Methadone Withdrawal humor.  Why are the lights blinking?)

This first research paper has a very specific target audience -- so, attention all orthopods!

The use of beta-tricalcium phosphate bone graft substitute in dorsally plated, comminuted distal radius fractures.Journal of Orthopaedic Surgery and Research

Michael G Jakubietz , Joerg G Gruenert and Rafael G Jakubietz
2011, 6:24
doi:10.1186/1749-799X-6-24


Published:  22 May 2011


Abstract (provisional)

Background:  Intraarticular distal radius fractures can be treated with many methods. While internal fixation with angle stable implants has become increasingly popular, the use of bone graft substitutes has also been recommended to address comminution zones and thus increase stability. Whether a combination of both methods will improve clinical outcomes was the purpose of the study


Methods:  The study was thus conducted as a prospective randomized clinical trial. 39 patients with unilateral, intraarticular fractures of the distal radius were included and randomized to 2 groups, one being treated with internal fixation only, while the second group received an additional bone graft substitute.


Results:  There was no statistical significance between both groups in functional and radiological results. The occurrence of complications did also not show statistical significance.


Conclusions:  No advantage of additional granular bone graft substitutes could be seen in this study. Granular bone graft substitutes do not seem to provide extra stability if dorsal angle stable implants are used. Dorsal plates have considerable complication rates such as extensor tendon ruptures and development of CRPS.

I know, I know -- where did that last line of the conclusion come from?  Is it really there or am I imagining things again?  Like I said, this has a definite target -- orthopedic surgeons -- and, well, I hope it doesn't keep any of them up at night!

Mwa ha ha ha!

Ahem.

Okay, on to something more "relatable," though not less specialized -- fixed dystonia in CRPS.  Just a few observations:  Classical dystonia is mobile;  Fixed dystonia is usually classified as part of functional movement disorders and is often labelled a contracture -- (though I think a better descriptor is fixed flexion postures);  All of that is code for "psychogenic."  Most studies will make quick mention that fixed dystonia happens mostly in females, many of whom suffer from dissociative and affective disorders. 

Sigh.

(Please note that I am sighing as I look down at my twisted and distorted foot... as I recall the initial days of CRPS, when my left hand looked like the infamous psychogenic claw!  I'm also flashing on some really cool concerts from back in the day, but that could be the DTs.  Mwa ha ha!)

So... once again, if you're a CRPS patient experiencing dystonia, be sure to see someone who is not going to automatically categorize you as a nut.  The authors of the study below are searching for an explanation beyond the easy and lazy classification of "functional," and posit that the neurotransmitters used by interneurons are misfiring or dysfunctional (he he).  If you are like me, you might want to start with this quick intro to interneurons!

Fixed Dystonia in Complex Regional Pain Syndrome: a Descriptive and Computational Modeling Approach

Alexander G. Munts, Winfred Mugge, Thomas S. Meurs, Alfred C. Schouten, Johan Marinus, G. LORIMER Moseley, Frans C.T. van der Helm and Jacobus J. van Hilten

BMC Neurology 2011, 11:53
doi:10.1186/1471-2377-11-53

Published: 24 May 2011

Abstract (provisional)

Background: Complex regional pain syndrome (CRPS) may occur after trauma, usually to one limb, and is characterized by pain and disturbed blood flow, temperature regulation and motor control. Approximately 25% of cases develop fixed dystonia. Involvement of dysfunctional GABAergic interneurons has been suggested, however the mechanisms that underpin fixed dystonia are still unknown. We hypothesized that dystonia could be the result of aberrant proprioceptive reflex strengths of position, velocity or force feedback.

Methods: We systematically characterized the pattern of dystonia in 85 CRPS-patients with dystonia according to the posture held at each joint of the affected limb. We compared the patterns with a neuromuscular computer model simulating aberrations of proprioceptive reflexes. The computer model consists of an antagonistic muscle pair with explicit contributions of the musculotendinous system and reflex pathways originating from muscle spindles and Golgi tendon organs, with time delays reflective of neural latencies. Three scenarios were simulated with the model: (i) increased reflex sensitivity (increased sensitivity of the agonistic and antagonistic reflex loops); (ii) imbalanced reflex sensitivity (increased sensitivity of the agonistic reflex loop); (iii) imbalanced reflex offset (an offset to the reflex output of the agonistic proprioceptors).

Results: For the arm, fixed postures were present in 123 arms of 77 patients. The dominant pattern involved flexion of the fingers (116/123), the wrists (41/123) and elbows (38/123). For the leg, fixed postures were present in 114 legs of 77 patients. The dominant pattern was plantar flexion of the toes (55/114 legs), plantar flexion and inversion of the ankle (73/114) and flexion of the knee (55/114). Only the computer simulations of imbalanced reflex sensitivity to muscle force from Golgi tendon organs caused patterns that closely resembled the observed patient characteristics. In parallel experiments using robot manipulators we have shown that patients with dystonia were less able to adapt their force feedback strength.

Conclusions: Findings derived from a neuromuscular model suggest that aberrant force feedback regulation from Golgi tendon organs involving an inhibitory interneuron may underpin the typical fixed flexion postures in CRPS patients with dystonia.

In other breaking news, "Ketamine induced selective impairments in timing..."

Put that in the No Kidding File. 

Well, folks, I'd better get back to my soon-to-be "Done"-less life.  I do hope you know I'm just joshing around about the difficulties of tapering off of methadone.  I am NOT having a hard time (yet) or experiencing anything I cannot deal with.  Just don't take away my ibuprofen.

Begging and Beseeching, Entreating and Imploring

  “Hope” is the thing with feathers -

That perches in the soul -

Emily Dickinson 1830–1886

Okay, so I'm STILL waiting for a call back from Philly about an appointment with the illustrious Dr. Schwartzman (see previous gush).

After days of some sort of Stupid Attack, I am finally remembering my well-earned expert opinion on... Experts.  Correction!  Make that: I know whereof I speak concerning those experts celebrated by a cult-of-personality-based community.  I've lots of unfortunate experience in this arena -- Derrida, Fish, Foucault, Jameson -- but not near enough, apparently, since here I sit in Marlinspike Manor's Computer Turret instead of the nearest Ivory Tower.

It's really more the Middling Players who are the actual offenders, anyway -- Bersani, Hollier, Lentricchia, Most Poets.  You learn the most from this moderate and scruffy crowd but you also accept more [unwarranted] abuse than is wise.  The accumulated angst and stress of simply sharing a town with them eventually detracts from the information received.

Note to other bloggers contemplating making their own Lists of Four:  Alphabetize.  That's the only solution to the Order Problem.  Well, I suppose you can also opt for a Living versus Dead construction, further subordered by Date of Death.

I am reminded of a conversation with Grader Boob from a few years back.

Grader Boob: Great news. I finished that pain-in-the-ass paper for the Incomplete I got in Misogynous Medieval Literature my last year in grad school. Knocked that sucker out over the weekend.


Me: Congratulations, My Brother-Unit! So what did the prof have to say?

Grader Boob: Not much. He died six weeks ago.

Grader Boob (again): But that's not the point...

I consider myself lucky to only be at the point where my doctoral committee now consists entirely of Emeriti.  Honorifics and Soporifics, that's the name of the game!

Putting my dementia aside, and returning to the present stressor of trying to relieve this soul-destroying pain afflicting my body, and, some might argue, my cognitive powers, as well ===>>

Is it Dr. Schwartzman's fault that there's an attention-starved group of people who share a sharp interest in the pain relief he may be able to offer?  Not in the least! But I wonder if he has a sense of it, really.  Does he feel it in his bones, in his hands?  We're going crazy out here;  We're going nuts for some relief.

In other words, don't screw with me when it comes to Matters of Hope.  Don't deign or feign, just shoot from the hip, be direct, be honest.  I say again:  Don't screw with me when it comes to Matters of Hope.

Is it to Schwartzman's credit that he is equally well known for being a compassionate man, and that compassion complements intellect like no other attribute known to humankind?  Of course it is... particularly since that assessment appears to have held very true over time. He sounds like a remarkable person.  I hope to meet him.

Someday.

Does any of this mean that his Schedule Coordinator gives a royal patootey about me, sitting here in rural Tête de Hergé (très décédé, d'ailleurs), once again pondering a Do-It-Yourself Amputation, though I still haven't solved the problem of how to cut off the last arm without at least minimal assistance?  Oh sure, I could probably rig something up with pulleys and the use of my awesomely muscular lip muscles, but the whole plan goes pfffffttttttttt once I decide that I don't want to bleed out, and that tourniquets are gonna be necessary. 

Errrr, I think not.  Said Scheduling Coordinator surely has separated herself from the needy tentacles of the thousands of patients seeking an audience.  She guards the gate, keeps the dates, protects the doctor, gets it done.

If the cult-of-personality-based community of CRPS sufferers were a wealthy community, things would be different.  We'd have decent DIY Amputation Kits, already! The right vises would be included, there'd be extra hardware, sharper blades, and clean-up would be a breeze.  Appointments would be made, and made reasonably.  For instance, I confess to thinking that there MUST be someone else in the Neuro Department with at least a faithful simulacrum of Schwartzman's skills, having been trained by him -- and with whom I might have an appointment within a reasonable period of time.  I am redefining "reasonable period of time" daily.  Right now, it means "within a year." Yesterday, it meant "around six months." Last Thursday, when I made First Contact, it meant "any day now, possibly tomorrow."

Yes, so... the Gatekeeper of Appointments has laid her foundation -- I gasped, suitably, when immediately reminded that the "next available" appointment with the Famous Doctor was in 2013.  Right.  Got that.  Knew that years ago.  Part of why I never bothered.  Y'know?

But, yes, so... I gasped.  "REALLY?  YOU'RE KIDDING?" It was passable.  She seemed satisfied that I was suitably in awe.

Because, of course, The Personality has thrown me the bone of a promise of consideration, of being worked into the packed planner.  I recognized Emily Dickinson's Thang avec Feathers right off the bat.

Then it became a matter of her never having heard of my health insurance coverage, you know, that coverage initiated by My Hero, President Obama.  Of course, me yelping at her about how it is administered by "JEFE" instead of the correct "GEHA" did not promote my cause in the least.  I do this regularly, Friends.  I don't know why JEFE strikes me as the thing to yell out in the identical manner that I might scream BINGO, but it does. 

By the time I was able to mutter GEHA, it was too late, I was relegated to the Hinterlands, to a I Will Call Back Tomorrow Morning Status.  Also informing that decision was her strange assertion that "the computer won't take your insurance's 800 number." I was tempted to follow up my calls of JEFE, GEHA, and BINGO with OVERRIDE, but thought better of it.

Enter Buddy the Kitten.

Oh, hush.  You knew he was going to snake his little squirrelly self into this mess.

He was apparently back at chewing wires on Friday and the phone was out most of the morning.  Therefore, I choose to believe that she tried to call me, and could not, due to the dastardly deeds of this reprobate kitten.  Still, I had the phone in my shirt pocket the rest of the day, even as I worked with doughs and slippery cold dead fowl (but never at the same time, oh no, never at the same time!).

Fine, thought I, slamming shut the oven door on the last batch of chicken carcasses.  Monday, she's gonna call Monday.  Monday is rapidly disappearing as I waste time writing this dejected post.

Why don't I call back?  Well, I am going to, thankyouverymuch.  I have established an artificial deadline of 3 PM, at which time I turn into someone with a backbone.

Unfortunately, my extensive experience with cult-of-personality situations and the gatekeepers thereof tells me that I will be dealing from a position of weakness, as I am in the position of begging and beseeching, entreating and imploring. 

That was Fred's contribution to the process thus far:  "Have you, ma chère prof, sufficiently begged, beseeched, entreated, and implored?" 
The answer is NO.  I haven't cajoled enough, haven't made my case, haven't had, in fact, the least bit of interest in going down that road. 

Am I supposed to announce that my pain score is stalled between 7 and 9 -- when I actually don't even believe in or understand the God-forsaken System of Misery Measurement?  Am I supposed to have my doctor make the call, so as to invoke preening, primping, fawning, and immeasurable posturing?  Should I weep over the telephone, sob a bit?

Well?  Yes?  No?  Never! Maybe?  It all depends?

I go back to consult with the doctor who prescribed the ketamine infusions for me here on Thursday.  It's going to be a chess match of a conversation.  Hopefully, I will have, by then, a date for evaluation in Philly, which would give me a bit of a conversational edge.  I want him to know how much I appreciate the effort he's made here but I also need him to accept that a different protocol is in order.  It's not that he is not as "good" as Dr. Schwartzman;  It's an issue of specialization and experience.

I don't feel badly about how this all got started.  In fact, I need to remember that -- all I did was email The Expert with a real question about how to get the most from these lower dose and infrequent versions of subanesthetic ketamine infusions. 

And The Expert knew compassion and said Why don't you come?  And what all of THIS is (waving my hands around in an effusively inclusive way)?  This is ME, TRYING.

Darned cat.
It's all Buddy's fault.