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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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.

 

Philly Bound?

I rarely send out an email loaded with blind copies, mostly due to the divergent nature of my group of friends and family.  This morning, though, was a wonderful exception. 

Hi --

This is a group email. I wanted to update everyone on the latest. An opportunity has come my way that I am excited to pursue.

Dr. Robert Schwartzman is one of the few true experts on CRPS/RSD in the world. He was the first to follow strict research protocols in the administration of the so-called Ketamine “coma cure,” pursuing this in Germany with great success. Dr. Anthony Kirkpatrick has a similar program in Mexico. Several years ago, they began investigating subanesthetic (i.e., non-coma) Ketamine infusions, and this option has become available at a short list of places throughout the United States. However, not every site employs the same protocols for administration of subanesthetic Ketamine, so it is sort of a mixed bag in terms of success.

I was lucky enough to find a location offering the treatment here in Tête de Hergé. Unfortunately, the protocol being used there is more conducive for treating other types of severe, intractable pain. It seems that CRPS responds best to what amounts to a blitzkrieg – [outpatient]10 days straight at a fairly high dose with follow-up “boosters," or [inpatient] 5 days continuous infusions, also at a high dose. The program at the X Center here is limited by funds, space, and staffing, and currently can only offer the treatment 3 days a week in short sessions.

After 6 infusions, spaced over a couple of months, I had no improvement. I wrote Dr. Schwartzman two weeks ago, asking what could be done to optimize the impact of the infusions. He wrote back with some explanation of the protocol he believes most effective, and invited me to see him in Philadelphia, where he is Chair of the Neurology Department at Drexel University College of Medicine. But it turned out that he has over a 2-year waiting list of patients, so I curbed my enthusiasm and began to scope out other options – for example, there is a Ketamine program at the Hospital for Special Surgery in New York City.

Then, yesterday afternoon, I got an email from Dr. Schwartzman’s Clinical Nurse Specialist, Ms. D, offering me an “expedited appointment.” It’s been a good while since I have cried for happiness.

Ms. D added: “He would also welcome your physician and/or the staff at x Institute to come to his RSD pain clinic any Monday to observe and discuss treatment protocols.”

There are still substantial problems and variables to address, beginning with any “exclusion criteria” they may employ at Drexel, and the logistics of getting there [$$$]. Even so, it would be worth going simply for the evaluation, I think.

Clearly, I am not quite done with what the X Center is offering and will see the doctor there soon.

[Click HERE for a short bio of Dr. Schwartzman.]

I have not been the most reliable communicator these past few months and hope everyone can forgive me. Of course, some of you are likely sick to death of hearing from me, and to those folks, I can only say “Thank you for your forbearance.” If anyone has any great ideas on how to get this done, please write. (Would you like to go with me?!) And if EVERYONE would think good and encouraging thoughts, I’d appreciate it!

Best wishes to one and all --

(Bianca; Eljay; Prof -- and other assorted noms de plume)

an email to diana and carol

I don't have the energy to rewrite what is going on in my head, so here is the text of an email I just sent off to two friends very familiar with my "issues":


Sometimes, when I get desperate, my luck changes...

Monday’s treatment was horrible. I started crying before they even started the i.v. – it just felt so futile. All I could think of was how this was my last chance for pain relief. I felt very bad because when I came out of it, I learned that the nurses were really upset by me being upset. But I couldn’t help it.

Okay, now... follow this story closely!

Last week sometime, out of desperation, I emailed Dr. Robert Schwartzman, the chairman of the Neurology Dept at Drexel University, and probably the most knowledgeable person on the planet about CRPS. I wrote him years ago and really didn’t expect an answer. I wanted advice on "how to maximize the benefits of my subanesthetic ketamine infusions."

When I got home Monday, there was an email waiting from him. It was very TO THE POINT:

Dear XXXXXX,


You have not had enough ketamine. You need ten consecutive treatments of two hundred milligrams per day with midazolam and clonidine. If this is ineffective, you need five days in the hospital with much larger subanesthetic doses of 40 milligrams per hour for five days. You would also need midazolam and clonidine with this dose.


This usually shows marked improvement. We will start some new work on stem cells and there are other treatments in the pipeline. If you can get up here and I will be happy to see you.


Best regards,


RJS

Just when I had no hope...

But I am getting ZERO support for doing anything more. Fred actually said, “How do you know he’s not just another quack?” I have talked about Schwartzman for YEARS! My go-to-guy actually had the nerve to write that I had already given it “the old college try.” I wanted to slap him.

I knew that Schwartzman has a huge waiting list, and yep, it would take two years just to see him.

Then into my head popped the “MCE” [Medical Centers of Excellence] program that is run by go-to-guy’s MDVIP organization – it is a system of referrals with top notch medical centers... It occurred to me that most cases of CRPS arise from orthopedic problems, injuries, and surgeries. One of the referral hospitals that MDVIP uses is the Hospital for Special Surgery in NYC – probably the number 1 orthopedic hospital in the country. So I went to their web site (it was 4 am...) and FOUND THAT THEIR ANESTHESIA/PAIN DEPT IS DOING INPATIENT KETAMINE TREATMENTS!

I also found something on their website that sounds exactly like what is going on with my shoulders:

 

(CRMO): Chronic recurrent multifocal osteomyelitis: “Chronic: because it does not go away for a long time. Recurrent: because it comes back. It cycles between active and dormant, symptoms and no symptoms, exacerbation and remission. Multifocal: because it can erupt in different sites, primarily bones. Each outbreak can be in a different part of the body. Osteomyelitis: because it is very similar to that disease but appears to be without any infection.” Wikipedia



DOESN’T THAT SOUND LIKE ME?????? That would totally explain why nothing grows in the lab!!!!!!

I need all my mental reserves right now – Fred is fed up. Dr. S (my go-to-guy) is fed up. But they can just get over it. I wrote Dr. S that we could start the process of getting me to the HSS in NYC when I see him in June. I want it done right this time. Last time, I was all set to go to Hopkins and ended up at the Medical College of Georgia with a man who did a consult in under 10 minutes (including review of the chart and x-rays).

Whew. Please don’t you two get fed up with me, either.

I so need to get some sleep.

Am I going crazy? Does the stuff I wrote seem reasonable to you? Does continuing the ketamine even make sense?

love, love, love

XXXXXX


"Love is patient, love is kind. It does not envy, it does not boast, it is not proud."
(1 Cor. 13:4)

Poststroke CRPS and Even More Ketamine

Good evening. I just watched President Obama clench his jaw and look like his head was going to explode, as he "turned the page" from the War-That-George-Started, which prompted neglect-and-wreck of our financial, health care, and educational systems... all of which he inherited.

All together now: Thanks, yes, thanks a lot, George W.!

All together now: Please, oh please, President Obama, don't have a stroke over George W.! Turn that dang page, dang it!

Why, speaking of strokes... the first of today's CRPS installments deals with Poststroke CRPS. Feeling much like Sergeant Schultz -- "I know nothing!" -- I did a little background reading. I recommend:

Complex regional pain syndrome underdiagnosed: CRPS type 1 is an under-recognized problem in limbs recovering from fracture or immobilized post-stroke
Journal of Family Practice, June 2005

From thalamic syndrome to central poststroke pain
G D Schott
Journal of Neurology, Neurosurgery & Psychiatry 1996 61: 560-564
(You can register at jnnp.bmj.com and have free access to articles before 2006)

If you aren't already confused about terminology, one web site I scoped out informed me that CPSP (Central Post Stroke Pain) is a type of CRPS... that used to be called Thalamic Pain Syndrome (also known as Dejerine-Roussy disease, of course!).  If Wikipedia's description of Thalamic Pain Syndrome is accurate, I am not sure that it so, despite a similarity of symptoms.  If *you* can clarify this for me, please leave me an elucidating comment!

Thalamic syndrome (or thalamic pain syndrome) is a condition that can be associated with inadequate blood supply from the posterior cerebral artery. It is a rare neurological disorder in which the body becomes hypersensitive to pain as a result of damage to the thalamus, a part of the brain that affects sensation. The thalamus has been described as the brain’s sensory relay station. Primary symptoms are pain and loss of sensation, usually in the face, arms, and/or legs.

Pain or discomfort may be felt after being mildly touched or even in the absence of a stimulus. The pain associated with thalamic syndrome may be made worse by exposure to heat or cold and by emotional distress. Sometimes, this may include even such emotions as those brought on by listening to music.

In all of the hour's worth of reading about Post-stroke CRPS, there was a disturbing reiteration of things like "sympathetic blockade" -- about which I have raled before.  Progress in understanding the etiology and processes of CRPS is now directing the treatment response away from a focus on sympathetically-mediated pain.

Anyway... here is the abstract for this latest contribution to the topic:

From Topics in Stroke Rehabilitation. 2010 May-Jun;17(3):151-62.


Poststroke complex regional pain syndrome


Chae J.
Department of Physical Medicine and Rehabilitation, Case Western Reserve University, Cleveland, Ohio MetroHealth Rehabilitation Institute of Ohio, MetroHealth System, Cleveland, Ohio.


Abstract
Poststroke Complex Regional Pain Syndrome (CRPS) affects a significant number of moderate to severely impaired stroke survivors. Until recently, advances in the assessment and management of CRPS have been limited due to the lack of a consensus on diagnostic criteria; however, with the development of the International Association for the Study of Pain diagnostic criteria, the medical and scientific communities are poised to make significant strides. Biomechanical factors and microtrauma to the hemiparetic shoulder may have a significant role in the genesis of CPRS, although the exact pathophysiology that links these triggers to the observed disease manifestation remains uncertain. Sympathetic dysfunction has historical importance in the CRPS literature. However, this appears to be only one of several possible pathophysiologic mechanisms; somatic nervous system dysfunction, inflammation, hypoxia, and psychological factors are also likely contributors to the disease process. There is no definitive treatment for CRPS, and most patients are treated empirically. Nevertheless, there is consensus that the treatment approach should be interdisciplinary with the goals of edema and pain control, maintenance of joint and muscle biomechanics, and functional restoration. As more rigorous clinical trials emerge, the treatment approach will become more rational with selection of interventions based on a specific mechanism or a combination of mechanisms responsible for a given individual's disease manifestation.

The second of today's articles is exciting, in that Dr. Schwartzman and ketamine research are in play. The journal, like most things these days, is beyond me -- Chirality. These are the aims and purposes of the journal:

The main aim of the journal is to publish scientific work on the role of molecular asymmetry in both biologically active and non-biologically active molecules in respect to their pharmacological, biological, and chemical properties. Drugs, pesticides, and other xenobiotics will be a major interest.

Papers on the chemistry (physiochemical, preparative synthetic, and analytical), pharmacology, clinical pharmacology, toxicology, and other biological aspects of chiral molecules will be published.

Among the topics to be covered are stereospecific synthesis, stereoselective analysis, preparative separation of chiral molecules, the influence of chirality on pharmacokinetics (absorption, distribution, protein binding, biotransformation, etc.), the influence of chirality on pharmacodynamics (drug-receptor interactions, pharmacological and toxicological activity), and the influence of chirality on clinical pharmacology (therapeutic index and response, bioavailability, adverse drug reactions, drug-drug interactions). Papers will also be published on regulatory and legal aspects in the development, testing, and marketing of chiral compounds.

Okay, I will 'fess up. I haven't a clue what a chiral compound is, and I am not in touch with the chirality that I was born with... although I think they might worship it off the western shores of Estonia, on a small island in the Gulf of Riga.

Hmmm? What? Oh. Right!  On to the Reference Works!

It turns out that chirality is a fascinating concept/thing/compound/word, derived from the greek for hand.  Of course, yes, I got lost in the term, but just for about twenty minutes.  Have you ever wondered whether it is eye or hand chirality involved when leaning your head aside to drink water straight from the tap?

A chiral molecule is a type of molecule that lacks an internal plane of symmetry and has a non-superimposable mirror image. The feature that is most often the cause of chirality in molecules is the presence of an asymmetric carbon atom.[1][2]

The term chiral (pronounced /ˈkaɪrəl/) in general is used to describe an object that is non-superposable on its mirror image. Achiral (not chiral) objects are objects that are identical to their mirror image. Human hands are perhaps the most universally recognized example of chirality: The left hand is a non-superposable mirror image of the right hand; no matter how the two hands are oriented, it is impossible for all the major features of both hands to coincide. This difference in symmetry becomes obvious if someone attempts to shake the right hand of a person using his left hand, or if a left-handed glove is placed on a right hand. The term chirality is derived from the Greek word for hand, χειρ (cheir). It is a mathematical approach to the concept of "handedness".

In chemistry, chirality usually refers to molecules. Two mirror images of a chiral molecule are called enantiomers or optical isomers. Pairs of enantiomers are often designated as "right-" and "left-handed."

Molecular chirality is of interest because of its application to stereochemistry in inorganic chemistry, organic chemistry, physical chemistry, biochemistry, and supramolecular chemistry.

And here you were thinking that I was gonna stay on topic, regaling you with yet another surge forward in CRPS research!  Ahem...

As I said, Dr. Schwartzman is involved, so you know ketamine cannot be far behind!  (That's unfair... but I am tired.)

From the journal Chirality. 2010 Aug 27


Enantioselective pharmacokinetics of (R)- and (S)-ketamine after a 5-day infusion in patients with complex regional pain syndrome.
Goldberg ME, Torjman MC, Schwartzman RJ, Mager DE, Wainer IW.


Cooper University Hospital, Department of Anesthesiology, UMDNJ-Robert Wood Johnson Medical School, Camden, New Jersey.


Abstract
Introduction: This study determined the pharmacokinetics and pharmacodynamics of (R)- and (S)-ketamine and (R)- and (S)-norketamine following a 5-day moderate dose, as a continuous (R,S)-ketamine infusion in complex regional pain syndrome (CRPS) patients.
Materials and methods: Ketamine was titrated to 10-40 mg/h and maintained for 5 days. (R)- and (S)-Ketamine and (R)- and (S)-norketamine pharmacokinetic and pharmacodynamic studies were performed. Blood samples were obtained on Day 1 preinfusion, and at 60-90, 120-150, 180-210, and 240-300 min after the start of the infusion, on Days 2, 3, 4, 5, and on Day 5 at 60 min after the end of infusion. The plasma concentrations of (R)- and (S)-ketamine and (R)- and (S)-norketamine were determined using enantioselective liquid chromatography-mass spectrometry.
Results: Ketamine and norketamine levels stabilized 5 h after the start of the infusion. (R)-Ketamine clearance was significantly lower resulting in higher steady-state plasma concentrations than (S)-ketamine. The first-order elimination for (S)-norketamine was significantly greater than that of (R)-enantiomer. When comparing the pharmacokinetic parameters of the patients who responded to ketamine treatment with those who did not, no differences were observed in ketamine clearance and the first-order elimination of norketamine.
Conclusion: The results indicate that (R)- and (S)-ketamine and (R)- and (S)-norketamine plasma concentrations do not explain the antinociceptive* activity of the drug in patients suffering from CRPS.

*reducing sensitivity to painful stimuli.

Ah, well.  That's science, that's the way the cookie crumbles, and c'est la vie. So the antinociceptive activity of ketamine remains elusive! It is good that they are working hard to tease out the mechanisms of its effectiveness, so that, one day, we can follow the bread crumbs back home...

I have a number of posts near completion, but keep losing my energy in the penultimate paragraph.  I promise to try and do better, or to trick myself, somehow, into finishing them.

And President Obama?  Good job, and thank you. 

By the way, I don't know if you've heard -- it may not have been included in your daily briefings -- but my Pre-Existing Condition Insurance Plan kicks in at midnight and tomorrow I go for my first battery of tests since they put the left prosthesis back in last year.  Gotta feed that high deductible (because you were willing to take on my high risk)!  So... yes, from the bottom of my heart: good job!

XXX Porn! Live, Totally Naked Women! XXX Porn!

Now that I have your attention...

One of the top ten subject searches that brings Virgin Readers to elle est belle la seine la seine elle est belle is "Laura Beckett."

Please note that she has nothing whatsoever to do with pornography!

In case you did not know, it's easy as pie to accumulate information about how, when, and from where people access an internet site, even such a humble one as this. The search information provides the occasional hint as to "why" you are here, too! So if you don't want me to know that it is you popping in, que c'est bien toi que est arrivé -- oh, just relax! I'm clueless and your anonymity is assured.

Really. I mean it!

I'll never tell.

Unless they beat it out of me. But even then, I'm not likely to remember.

Honest!

Anyway, I got to thinking [it happens, now and then]:

The last I "heard" -- through my own searching -- Laura Beckett remains paralyzed after her struggle with MRSA that began while she was in Germany pursuing the Ketamine coma treatment for CRPS/RSD. I seem to recall that she is currently in a rehab -- a situation that I hope is temporary. I believe she continues to require assistance breathing -- but I am not completely, reliably sure.

Indeed, we all send out hopeful, curative thoughts into the universe on her behalf.

There is a danger in the "I-read-it-somewhere" proliferation of information. Yes, I know I am participating in that danger -- I may even have a proprietary involvement, at this rate. But the serious searches that lead people to this blog most often pertain to some form of ketamine research, whether it be in Mexico, Germany, or in booster form within the United States, or to CRPS clinical trials.

I am sometimes moved to tears by the search terms -- the descriptive terms for the pain, most often expressed as burning, or as fire, itself; the unanswerable questions, safely posed when alone with a computer, usually about mobility, the loss of a job, of friends, of family, of sanity.

So if you get here by accident, by some haphazard search for new information about CRPS/RSD, please know that you are not alone, and that, as weird as this blog likely seems to you, it is the evidence of my effort to defy this disorder in as major a way as I can. I encourage you to curb your incessant searching and to turn, instead, to creation. You can safely trust that RSDSA, among other organizations, is more up to speed than you or I could ever be, alone.

And didn't Your Mama ever tell you not to trust strangers?

EDIT: My memory is not too messed up. The source of my tidbits of information regarding Mrs. Beckett turns out to be the August 10, 2009 issue of People magazine:

In October 2008, RSD patient and mother of three Laura Beckett, 47, of Magnolia, N.J., developed pneumonia while in a coma in Germany and was kept under for three weeks as doctors fought to save her. She woke up paralyzed from the neck down and now lives at a rehabilitation center. "It's an understatement to say things went wrong," says husband Karl, though he adds his wife's pain was so unbearable they would likely choose the coma again. Says Schwartzman: 'We've had tragic outcomes. But this is only attempted after every other treatment has been tried."

And that reminds me of two other thing I wish to stress:

**My profound respect for Dr. Robert J. Schwartzman, neurology chairman at Philadelphia's Drexel University College of Medicine -- and my gratitude on a personal level for his dedication to helping those living with CRPS.

**My belief that experiences with MRSA (and variations) can be had at any hospital in the world, no matter how clean, no matter how excellent. I do not know the particulars of Laura Beckett's infection. I understand, and am sympathetic to, the desire to blame some person, place, or thing -- but there is nothing good in that, beyond correcting whatever may need correcting. MRSA is a monster of our own creation.

Photo credit for Kitty Porn: Let's Talk Politics

More On Ketamine (Courtesy of the StudMuffin)

Courtesy of Jim Broatch, the StudMuffin of RSDSA (Reflex Sympathetic Dystrophy Syndrome Association -- an organization in need of a new name, if ever there was one...). Jim and His Fellow StudMuffins at RSDSA do phenomenal work for those mired in suffering now, all the while keeping their heads above water, their eyes on the prize of future therapies and happenin' research.

In fact, kiddos, the real "read" here is not this pitiful little article from People magazine (I mean, the magazine's editors *would* look at the most extreme and ill-afforded "therapy" out there -- forget the hundreds of thousands who have no access to it, or who don't believe in its claims, or who are just too far gone into misery... and co-morbidity. I rhymed!) -- no, the real read is in this link that Jim Broatch also provides, which is to legitimate information to help you make up your mind about the ketamine angle based on solid stuff.

To read up on my illegitimate posting on ketamine, much of it having to do with Laura Beckett and her sad odyssey, take a gander here. I promise it is all uninformed opinion. You're welcome.

All of that said, here's the gist of the People article, and best wishes to John Roach, its subject.

I love the title!

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

This Man CHOSE to be in a Coma

After years of excruciating pain that drove him to thoughts of suicide, John Roach decided to gamble on a controversial new treatment-a ketamine-induced coma.

August 10, 2009
By Alicia Dennis
PEOPLE Magazine

John Roach looks up at wife Rosemary from his bed in room 133 at the Hospital San Jose in Monterrey, Mexico. "Don’t say goodbye," he pleads as doctors prepare to send the burly grandfather form Allentown, Pa., into unconsciousness. "It’s okay," Rosemary says. "Pleasant dreams."

Soon, deep in a coma, John descends into a frightening, topsy-turvy world. Scene: He’s in a strange house with paintings on the ceiling. Scene: He’s watching as his cat rushes into the path of an oncoming car. Scene: He’s a World War II soldier fighting on a blood-soaked battlefield. "It was weird and frightening," John recalls of his voluntary, five-day ordeal in late May. "But I needed to do something."

Suffering from a debilitating neuromuscular disorder called reflex sympathetic dystrophy (RSD) , John, 50, is one of about 100 chronic-pain patients resorting to a radical new treatment in search of relief-medically induced coma using ketamine, a surgical anesthetic and hallucinogen sold illegally as "Special K." advocates say ketamine comas can be a godsend for some. "We're giving people in excruciating pain a normal life," says Dr. Robert J. Schwartzman, neurology chairman at Philadelphia's Drexel University College of Medicine; since coma therapy isn't FDA approved, he's sent more than 60 patients to Germany and Mexico. But other experts say the treatment, which costs as much as $ 50,000 with travel, is too risky. "Vulnerable people are getting something expensive and potentially dangerous," says Dr. Norman Harden of the Rehabilitation Institute of Chicago.

Some 200,000 people suffer from RSD, in which ordinary pain escalates to crippling levels. "Think of holding a blowtorch to your skin," says John, whose entire left side was affected after he fell down rotted stairs and tore his rotator cuff in 2002. Because ketamine blocks pain receptors, Schwartzman says, very high doses can restart the nervous system, "like rebooting a computer."

Brandy Sachs, 23, of Christianburg, Va., had spent seven years in a wheelchair after a finger injury and ankle sprain spiraled into all-over agony. "I was giving her pain meds in doses that would have killed a horse," says her family doctor, Jeremy Freeman. Last fall, after undergoing a five-day coma in Germany, Brandy needed months of therapy to relearn how to walk, talk and eat. But now, she says, she's pain-free and plans to start her master's degree: "It's a miracle."

Not always. In October 2008, RSD patient and mother of three Laura Beckett, 47, of Magnolia, N.J., developed pneumonia while in a coma in Germany and was kept under for three weeks as doctors fought to save her. She woke up paralyzed from the neck down and now lives at a rehabilitation center. "It's an understatement to say things went wrong," says husband Karl, though he adds his wife's pain was so unbearable they would likely choose the coma again. Says Schwartzman: 'We've had tragic outcomes. But this is only attempted after every other treatment has been tried."

John, a jovial retired phone-company worker, had tried surgery, physical therapy and heavy doses of pain medication, including OxyContin, codeine and fentanyl. When nothing worked, he thought of ending it all. "I couldn't be touched," he says. "I couldn't hold my wife's hand or sleep next to her. It wasn't the life I wanted."

Back home now, John is amazed that he's been virtually pain-free. Getting regular ketamine booster injections (at non-coma levels) from his physicians, Schwartzman and Dr. Anthony Kirkpatrick, he has removed a protective compression sleeve he wore for years and can once again wear his watch and wedding ring. Best of all, he can walk hand in hand with Rosemary and scoop up his granddaughters for hugs. "I have been missing all the little joys in life," he says. "Now I want to live every one of them."

RSDSA: Information on Ketamine Treatment

Clin J Pain. 2009;25:273-280

The Natural History of Complex Regional Pain Syndrome
Robert J. Schwartzman, MD, Kirsten L. Erwin, BS, and Guillermo M. Alexander, PhD

Objective: Complex regional pain syndrome (CRPS) is a severe
chronic pain condition characterized by sensory, autonomic,
motor, and dystrophic signs and symptoms. This study was
undertaken to expand our current knowledge of the evolution of
CRPS signs and symptoms with duration of disease.

Method: This was a retrospective, cross-sectional analysis using
data extracted from a patient questionnaire to evaluate the clinical
characteristics of CRPS at different time points of disease
progression. Data from the questionnaire included pain characteristics
and associated symptoms. It also included autonomic, motor,
and dystrophic symptoms and also initiating events, ameliorating
and aggravating factors, quality of life, work status, comorbid
conditions, pattern of pain spread, family history, and demographics.
Comparisons were made of different parameters as they
varied with disease duration.

Results: A total of 656 patients with CRPS of at least 1-year
duration were evaluated. The average age of all participants was
37.5 years, with disease duration varying from 1 to 46 years. The
majority of participants were white (96%). A total of 80.3% were
females. None of the patients in this study demonstrated
spontaneous remission of their symptoms. The pain in these
patients was refractory showing only modest improvement with
most current therapies.

Discussion: This study shows that although CRPS is a progressive
disease, after 1 year, the majority of the signs and symptoms were
well developed and although many variables worsen over the
course of the illness, the majority demonstrated only moderate
increases with disease duration.