Saint Blaise, Somewhere on the Seventh Floor Observatory, With a Papier Mâché Chalice of Prior Approval Paperwork

Marlinspike Hall sleeps around me with such intensity, precision, and natural beauty that I mistook the funky quiet for that muffled, inimitable blanket of sound that falls with heavy snow.

Turns out, it's just cold, mid-morning, and a Tête-de-Hergé National Holiday, of which there are only two, so the Genetically Indentured Domestic Staff are sleeping in arduously, as well as the Cistercian brotherhood next door (their sleep carries, let me tell you!), amplified by the trained cadence of the overly red-wined snores of their Abbot Truffatore, whom my powers of echolocation place at the second Medieval half-renovated kitchenette nearest our wing of the Manor.

The Holiday?  Now, keep in mind that it's nothing to do with religion, more with husbandry, mostly of the animal sort, and veterinary medicine, light years more advanced than t'other sorts.  Most vulgarly stated, however, and to keep things simple, which is how we like it, it's to celebrate, by a grand sleep-in, celebratory, mostly, of the grandest adenoids in all the land, and of the Catholic Feast Day of Saint Blaise. It all makes our kind of sense.

Many Catholics might remember Saint Blaise's feast day because of the Blessing of the Throats that took place on this day. Two candles are blessed, held slightly open, and pressed against the throat as the blessing is said. Saint Blaise's protection of those with throat troubles apparently comes from a legend that a boy was brought to him who had a fishbone stuck in his throat. The boy was about to die when Saint Blaise healed him. 

Very few facts are known about Saint Blaise. We believe he was a bishop of Sebastea in Armenia who was martyred under the reign of Licinius in the early fourth century. 

The legend of his life that sprang up in the eighth century tell us that he was born in to a rich and noble family who raised him as a Christian. After becoming a bishop, a new persecution of Christians began. He received a message from God to go into the hills to escape persecution. Men hunting in the mountains discovered a cave surrounded by wild animals who were sick. Among them Blaise walked unafraid, curing them of their illnesses. Recognizing Blaise as a bishop, they captured him to take him back for trial. On the way back, he talked a wolf into releasing a pig that belonged to a poor woman. When Blaise was sentenced to be starved to death, the woman, in gratitude, sneaked into the prison with food and candles. Finally Blaise was killed by the governor. 

Blaise is the patron saint of wild animals because of his care for them and of those with throat maladies.

We lit-crit types, especially we of the bad sort, ill-trained, and sleepy, could get a dissertation out of that, then kick back at our Defense, and start an almost natural fight among our Friends There To Judge Us that could easily last the requisite three-to-fifteen hours, no bathroom breaks required.

Bad habits die easily, thank God, and now that Fred is stumbling about and phones are ringing, the better habits promise to prevail and coffee cannot be far behind.  Buddy just vacated the wheel chair, after sneezing, pointedly, and with prodigious productivity, upon my joy stick, finishing his work with the careful application of a single 6-inch strand of this Marlinspike Hall Maine Coon's Serengeti counterpart's tawny mane sun-drenched fur -- still warm and redolent of the male markings of which modern veterinary science has rendered Buddy incapable. If you followed that, free parking for 2015 ManorFest!

While everyone slept, I worked.

I confirmed that the snafus Fred and I assumed to be true, were in fact, true.  Call this the polite, fact gathering portion of the endeavor.  Included were the more important confirmation of fax numbers and phone numbers, contact persons, hours of operations, and the names of any interesting listen-while-you-wait music.
No growling, no brains on the ceiling.

[Damn.  Fred made himself coffee.  But none for the gimp.  You want brains on the ceiling? Now there are gonna be brains on the ceiling.]

[Double Damn with cherries on top.  Fred has another luncheon date.  Followed by a mission of mercy for me, so I can hardly beg for coffee.  I hate Catholics. Blaise was sure gonna get coffee while they starved him to death, I betcha.  Whatcha wanna bet?]

[Triple Damn and be it on Fred's Flat Head this time. Said luncheon date, which, okay, truly is a kindness and a genuine act of fellowship on his good part, not to mention that it takes place outside of this godforsaken bed and bedroom, far away from the Feline Triumvirate and the intricacies of Manor Domestic NitPickiNess... However, it's a good hour-and-a-god-damned-half away, leaving a good god-damned languid enough period of time to cafe-presse a cup of decent coffee. "But I'm going to run 'cross the drawbridge, through the snoozing carnies, up the barn loft defenses, through the hay gate, shimmy across the ropes to the computer turret, have Sven send up my coffee, and have loads of emails to get through before I have to be in town for this luncheon gig..."]

[All Damns revoked.  I hear the kettle singing.  A line missed by both Angelou and Whitman. Throw in each to each and it could be Eliot.  But I resent the guilt out.]

Yeah, and now my detailing of my work on this Saint Blaise Day is all soiled, piggy, and dead, sour meat.

I'm trying to get the pain medication that was prescribed on 23 January 2015 filled.  It's available.  It's not strange.  It's in my new insurance formulary.  Because I did not know whom my new pain management doctor was going to be, I surely did not know that we were going to change my long-acting pain med, something I longed for, but dared not hope for (not with PF Flyers on the concrete kind of wanting, if you, Dear Reader, get my drift).  So when the marvelous and tremendously overworked Dr. Ramasubbu actually wrote the prescription, without ANY records or any bona fides beyond my writhing self and half-coherent history, corroborated by what I had been able to download and print -- okay, with Sweet Fred's assistance -- well, I was... in disbelief.

She also prescribed Topamax.  She permitted me to continue with my breakthrough meds though my impression was one of less-than-happiness.  She made a one-month appointment.

There were many innuendos and eyebrow sentences.  Had we not passed most of the larger holiday seasons, I'd have been watching for fingers placed meaningfully, tropefully, alongside various-sized noses. I had broken many rules.  Ignorance, good intentions, scientistic experimentation, frugality, desperation, take your pick.  I also did what Fred abhors. "Abhor" does not begin to cover it.  He SLAMS poor Ruby's tender steering wheel when I launch into my tale of "how did it go with the doctor?" When I get to the part which starts, "So I told her/him the truth..." -- BAM, BAM, BAM! Poor Ruby and I cringe and go quiet for a good ten miles or so, as I listen to "Why? Why do you tell them the truth? Etc."

Anyway, the truth went well.  Dr. Ram made a passing reference to being required by law to destroy the pain meds I had brought in to show her.  At the time, thinking that new meds were as available as a quick stop at a nearby pharmacy, I was almost okay with that.  But then some sort of libertarian me surfaced [I know!] and bombarded my brain with thoughts of:  Wait a minute, I paid for those, they're mine, and I've used them as directed, of even UNDER as directed!  And wait a minute, I paid for those, they're mine!

None of those thoughts exited my brain, which was good, as I was dealing with law-abiding but stern folk with whom I had not yet signed any forms, and whose eyebrows had been wriggling like crazy.

Oh, the truth?  I had cut down the dose of my Fentanyl patch, from 100 mcg to 75, on the off-the-cuff but, I thought, well-considered, advise of an excellent nurse practitioner chez my last pain management provider, with those thriving Kaisers. In order to do this, I'd dug into a lovely, large and fragrant woven bag meant for Indian Basmati rice, into which I had tossed the dregs of prescriptions over the last 5-6 years.  Antibiotics that were changed after the first very expensive dose.  Anticonvulsants that made me insane and did nothing for neuropathic pain.  Inexplicable bottles of Methadone and Baclofen, in quantities for which I am now grateful. Mostly the work of overzealous, unthinking, unsavvy doctors, though looking at the doses of some of the methadone bottles, I am thinking that guy wanted me dead.  Thinking back... he almost succeeded, with the blame placed squarely on me. But he, he no longer matters!  However, I may take Dr. Ram one of those [empty] bottles to explain my reticence at being put back on methadone, that and the whole experience of getting off of methadone! [ HERE are just this blog's methadone entries labelled "jump-off," when I -- w/o medical supervision or approval, took myself off all opiates in roughly a month so as to best approximate a treatment protocol that was my best shot at a cure.]

The rest of the truth?  That nothing was working.  I'd reached the point thought unreachable, of 10/10. Blah, blah, and blah. I think that was about it.  I warned her that I'd continue to tell her the truth, comfort for either of us be darned and dratted.  She preferred it so. I finally relaxed. Someone told me, "Pack up my meds, sign here, here, and, uh, here, here are your prescriptions, get dressed, make your next appointment on the way out and you are good to go!  Nice to meet ya!"

Each of those things was as a marathon.  But I was so happy.  I was free of the greasy-haired man everyone thought so great, who loved to fold my now unfoldable hands [shut up] into his long, i-should-have-been-an-oil-painter-in-amsterdam hands, and say, "There is no hope for you, no cure, nothing is going to get better."

I packed up my meds. I signed.  I tucked my new prescriptions in my pocket (after screamingly getting dressed).  I made my next appointment, face dripping in ladylike perspiration (channeling my sweet stepmom), and found what's-his-name, the object of admiring stares by two babies in strollers, watching him softly snuffle-sleep, book on the belly, ignoring the educational DVD cued for their learning pleasure.

"I'm not asleep!" yelled Fred, and the girls giggled.  He giggled back.  Kids love Fred!

On the way down to the parking dungeon in what was called "The Tower," I spotted a pharmacy. A bright girl, head full of Merlyn and birds and stones, I cried, "Halt!  Let's stop here and get these Rx filled, Mr. I-Am-Not-Asleep, Fredster!"

Great place. Small but fully equipped, being essentially in a hospital and next to a cancer treatment wing.

"Topamax? Not a problem.  Seven bucks!  As for the other?  Didn't you check with your insurance company? It requires Prior Approval."

By then, I'd been hit with hypoglycemia as well as the pain wall.  The pharmacist started her sentences speaking to me and finished speaking to Fred, who was lost, having just not-woken-up.

So I told him to run upstairs and ask them what to do.  And ate pretzels. He came back, said the pharmacy should hang on to the prescription, and that Dr. Ramasubbu would fax the PA paperwork to start the approval process with the insurance.  It might take as long as 7-10 days. Sounded like a plan. New plan, new docs, kinks, and so on.

Forth.

Except that yesterday, ten days later,  I got up the nerve to call the pharmacy, who said they'd heard nothing.
Checked with the insurance company, who'd managed to mail order 90-day supplies of all other meds within the week, and they had no record of the prescription at all. I asked them to fax the necessary paperwork to Dr. Ram and received a crisp, "That will be done in 6 to 8 minutes, and when we receive her response, it will take us 24 to 72 hours to make our decision." I saluted from the bed.

I yam what I yam.

Marlinspike Hall slept around me with such intensity, precision, and natural beauty that I mistook the funky quiet for that muffled, inimitable blanket of sound that falls with heavy snow.

It seemed prudent to check with the hospital pain center to see if the fax was successfully received and whether anyone had had a chance to look at it.  Twenty-five minutes on hold -- but fascinating music.

Bottom line.  Nothing from yesterday, but a bunch of stuff from "the 18th" [of January?  A Sunday?] "Could that be it?"

There's more and it was all equally time-consuming, stupid, and led nowhere.  Like, Fred was to pick up CDs of imaging studies, either at building 2001 or 2045, but the "good news" was -- get this -- that at either building, it would be on the 7th floor!  One tech guy was responsible for putting this video game together, but where it ended up depended on how his mind worked:  did he favor the hip orthos (2001 building) or the ShoulderMan (2045 building).

No mercy, however, for the woman who thought there was comic relief in the fact that, whichever building it might be, it would definitely be on a seventh floor.

I'm gonna take a nap.

© 2015 L. Ryan

Dr. Scott Reuben: A Slap on the Wrist, Another Lie on the Lips

This piece was originally published on 1 August 2010. I only reread it due to its sudden surge in popularity among visitors to this blog, surpassing even those obsessed with that physician turd, Ochoa. Then I realized that Scott Reuben must be celebrating, not just one of the season's holidays, but his release from court-ordered supervision. May his patients be protected, his research unfunded, and any attempt at publication, refused.

In the course of preparing the recent posts on CRPS-related clinical trials, thoughts popped up of Dr. Scott Reuben.  I was reading the background for a trial about the anti-hyperalgesic effects of Coxibs, and Reuben's name and face came to the forefront of my consciousness when I read that there was "no valid information available" on the topic.

Yes, a quick review of the original 21 fudged and fabricated articles shows the long arm of Dr. Reuben, hard at work, and featured in a peer-reviewed journal:

Update on the role of nonsteroidal anti-inflammatory drugs and coxibs in the management of acute pain.  Reuben SS.  Curr Opin Anaesthesiol. 2007 Oct;20(5):440-50. Review.
PMID: 17873597

In fact, Reuben was prolific on the subject of coxibs (COX2 inhibitors), almost as if he had a personal stake in their reception and use:

[One journal editor] estimates that Reuben's studies led to the sale of billions of dollars worth of the potentially dangerous drugs known as COX2 inhibitors, Pfizer's Celebrex (celecoxib) and Merck's Vioxx (rofecoxib), for applications whose therapeutic benefits are now in question. Reuben was a member of Pfizer's speaker's bureau and received five independent research grants from the company.

On June 24, 2010, Dr. Reuben was sentenced to 6 months in prison, after pleading guilty to a single count of fraud.  Oh, but that's not all. No, he also has to pay a $5,000 fine and $361,932 in restitution.  Lord only knows how much money was made in collusion with pharmaceutical companies and [I am convinced] silent partners (also known as "co-authors").

The legal system's wink at his wrongdoing and its impact is almost as insulting and frightening as the crimes themselves.

In my first post about Reuben, I asked:  "How to accurately quantify the amount of pain this man has caused? How many 'adverse reactions,' how much permanent impairment, how many deaths?"

The title of that first post was "Follow the money." By presuming him to be a common criminal, I seem to have hit upon the truth pretty easily.

Harrumph!

What trumps my harrumph is the load of total crap that has been delivered as his "defense," and which constitutes the ultimate insult to anyone dealing with pain management based on his fraudulent research.

The poor man fudged all those research studies while MANIC... My eye!  Mon oeil!

He surely is impugning the character of people with bipolar disorder by naming the psychiatric disorder as the cause of this fraud perpetrated on his field of study, his co-workers and larger colleagues, his patients, and science, in general. 

What an ass, what a jerk, what a con.

There is a growing literature on bipolar illness and criminality, most of it written by and for a medical audience.  In strictly legal terms, however, the liaison is more tenuous, in that a mood disorder does not affect cognition.

Comorbidity of psychiatric disease with twisted conduct, in the case of Scott Reuben?  Unless the claim is that depression and mania ought to be linked with some kind of periodic antisocial disorder... Oh, please.  It's such good news that he's feeling much better now.

If the mania of bipolar disorder mitigates his guilt in committing these frauds, what explanation is there for his failure to rectify his wrongs once he had cycled on to some other affective phase, once he had begun treatment? Unless, of course, he did not think that imposing his opinions constituted a crime because of his innate superiority, because of the presumed stupidity of his colleagues (the peer-review process didn't exactly have him shaking in his boots!) and patients (he never thought they would actually consult, and weigh the value of, his purported research).

Or, it could have been all about the money.

I fear that the delusions of mania being claimed as defense and explanation by Reuben are borne of the same deluded self-image that we encourage in our physicians and researchers, though we're much more comfortable with the narcissism of a trauma surgeon than we are of the pain manager/anesthesiologist.

Looking back, it's scary to see the evidence of our willingness, as patients, to subvert what we know to be right due to our own delusions, our worship of Dr. God.  Witness this comment left after one of the first discussions of Reuben's falsifications:

Keep in mind he isn't a person off the street he's a DOCTOR and has many years of service and experience...

And this, from one of his patients, still boggles the mind:

I do know that new drugs are not passed by FDA without a certain amount of research on so many people. I do know him and he was my Dr. for many years. Those people that know him and had him as Dr. can all say the same thing, you can't find a more gentle, caring, concerned Dr. as Scott Reuben. If all he did was altar names on charts then that's not so bad. Keep in mind the HIPA law.

If this doctor (married to a psychiatrist, by the way) lacked the massive insight required to know right from wrong in an instance such as inventing test subjects for a fictive drug trial, I might wonder if his problem was not so much a persistent megalomania but more a high-functioning psychosis.

Oh, but have no fear of future wrongdoing to complement his decades of past criminality, because Dr. Reuben will undergo THREE whole years of supervision upon his release.  How it is that he retains his medical license is beyond my powers of comprehension.  And clearly wrong, given the severity of his psychiatric impairment.

When Reuben entered his guilty plea, his attorneys claimed that he had been suffering from an undiagnosed bipolar disorder during the period when he committed the fraud, the apparent result of a manic phase. Reuben was unusually prolific with “research” projects during a 2000-2001 sabbatical, having published 8 papers. Dr. Reuben’s wife, Susan Romm Reuben, MD, is a psychiatrist. Dr. Reuben attempted suicide twice in 2002, his lawyers said. His claim of mental illness has been called under question however.

Glenn J. Treisman, MD, PhD, professor of psychiatry, behavioral science and internal medicine at the Johns Hopkins University School of Medicine in Baltimore, said that although some criminals have bipolar disorder, the condition does not necessarily foster antisocial behavior. “Lots and lots of people have bipolar disorder who don’t commit fraud,” Dr. Treisman said. Equally strange is when “that person was better and knew that he did wrong but didn’t come forward.” Dr. Treisman said it was “unlikely” that Dr. Reuben’s disease would have gone undiagnosed for so long, given that he was a physician married to a psychiatrist. “By the time someone’s tried suicide twice, their psychiatrist wife would have known something was going on,” he said.

Reuben’s bogus research was published in various prominent journals including Anesthesia & Analgesia, Anesthesiology, Journal of Clinical Anesthesia, Journal of Arthroplasty and other titles, which have since retracted the papers. The journals stressed that Dr. Reuben’s co-authors on those papers have not been accused of wrongdoing. He has been accused by at least two of his co-authors of putting their names on his papers without their consent. Anesthesiology News uncovered fraudulent inclusion of one co-author by contacting the alleged research partner he claimed.

Dr. Reuben’s research helped lay the foundation for an emerging area of perioperative care known as“multimodal analgesia”. The scope of the fraud has left “a large hole in our understanding of this field,” said Steven L. Shafer, MD, editor of Anesthesia and Analgesia, “It will take a while for science and practice to sort this out.”Anesthesia and Analgesia published more of the tainted papers than any other journal and quickly announced changes to its guidelines to avoid similar incidents. Allegations of rampant fraud involving Dr. Reuben’s research and the retraction of papers were first reported by Anesthesiology News (March 2009) after Baystate Medical Center officials uncovered evidence of wrongdoing following a routine audit. Falsified reports involved at least 21 articles dating back to 1996. The “research” was funded by grants from Pfizer, Merck & Co. and Wyeth/Rays of Hope for the drugs Celebrex, Vioxx and others.

For what it is worth, I cannot fathom how the pharmaceutical companies with which he colluded (there *had* to be collusion -- you know it, I know it) are walking away unscathed from the revelations of bad and evil science;  Nor do I understand how "co-authors" claim to be unaware of their publishing histories!  Academic publishing is highly insular... Who publishes, when, and where, is common knowledge, fodder for everyday gossip and little things like job retention and the granting of tenure. 

Maybe these hapless co-authors don't read some of the foundational journals in their field?  Is that their explanation?  Or -- maybe -- they were all so lost inside of a huge cloud of clinical depression that they just couldn't find the energy to care? 

More likely?  The Mysteriously Published were too busy meeting the needs of nymphomania, screwing their colleagues, right and left...

The Powers That Be may have blinked, and winked -- but not everyone has lost the capacity to unscramble the plots of this tragicomedy:

Pfizer: The Drug Giant That Makes Bank from Drugs That Can Kill You
 
To say Pfizer’s been accused of wrongdoing is like saying BP had an oil spill. Other drug companies have a portfolio of products, Pfizer has a portfolio of scandals including, but not limited to, Chantix, Lipitor, Viagra, Geodon, Trovan, Bextra, Celebrex, Lyrica, Zoloft, Halcion and drugs for osteoarthritis, Parkinson’s disease, kidney transplants and leukemia.

During one week in June Pfizer 1) agreed to pull its 10-year-old leukemia drug Mylotarg from the market because it caused more, not less patient deaths 2) Suspended pediatric trials of Geodon two months after the FDA said children were being overdosed 3) Suspended trials of tanezumab, an osteoarthritis pain drug, because patients got worse not better, some needing joint replacements (pattern, anyone?) 4) Was investigated by the House for off-label marketing of kidney transplant drug Rapamune and targeting African-Americans 5) Saw a researcher who helped established its Bextra, Celebrex and Lyrica as effective pain meds, Scott S Reuben, MD, trotted off to prison for research fraud 6) was sued by Blue Cross Blue Shield to recoup money it overpaid for Bextra and other drugs 7) received a letter from Sen. Charles Grassley (R-Iowa) requesting its whistleblower policy and 8 ) had its appeal to end lawsuits by Nigerian families who accuse it of illegal trials of the antibiotic Trovan in which 11 children died, rejected by the Supreme Court. And how was your week?

To read all posts about Scott Reuben on elle est belle la seine, click HERE.
Graphic credit: Clinical Guidelines for the Use of Coxibs in Osteoarthritis (OA) and Rhematoid Arthritis (RA)

Eric Carson, Doctor God

Due to an assortment of reasons, delay in diagnosis of CRPS is probably the foremost cause for treatment failure.

That's why I wish the diagnostic criteria were clearer, physicians and nurses were better informed, and, in those cases where litigation over injury/negligence/malpractice is ongoing, disinterested medical care were made available concomitantly.

There's nothing quite so demoralizing as having a competent physician, experienced in CRPS treatment and research, interrupt your Castles in Spain presentation to say, "Retired Educator, there is nothing, no treatment, no drug, left for you to try... It's not going to get any better... It's only going to get worse." That ranks up there with the doc who muttered, "If I had CRPS, I'd kill myself."

In my case, a group of doctors (Carson, Sween, Kelman and friends) and a hospital (SJHA) kept me undiagnosed and untreated long enough for the CYA statute of limitations to kick in after I developed CRPS after a fall in the ICU.  In lieu of suing, I asked for an investigation by the state, who uncovered enough details that investigators declared the 2002 clusterfuck a "Sentinel Event."

Dearest doctors, dearest hospitals!  You'd be surprised at how far honesty and compensatory action in good faith would get you.  And by "compensatory action," I mostly mean just doing your best to make things right.  Like providing prompt and appropriate treatment.  That kind of stuff.

So, my longtime readers are rolling their eyes in boredom, with thoughts like, "grow up and get over it" quite rightly popping up in between their ears.

I had been wondering why my first visit to my new Pain Management Dude last week was "off," beyond the significant impact of his radiating body odor -- which I am willing to attribute to an overnight shift and hard labor.  When he inquired about the genesis of my CRPS, I began to give him the extreme short version, but even that was cut off.  This is what I got out of my mouth before he gave a huge cough and began shuffling papers:  "I fell while in ICU and broke..." From there we went directly to his predictions of doom and hopelessness, with well-placed exclamations of "oh, my God" when he pried the slippers off of my feet.

His name was so familiar.

I deposited that name into the wondrous search function of my browser and voilà... he is part and parcel of the offending and offensive orthopedic group that spearheaded the 2002 ClusterFuck.  That's why there was no need for me to finish my story, provide my medical history -- because he already knew it. He clearly could not bear to hear it again.

Recently, during one of those late night screaming orgies we so love, I sent an email, between spasms, to Dr. Eric Carson, egotistical major mover of the 2002 SNAFU.  It's gone unanswered, which is good, as there's no appropriate response.  He's now attached to the University of Virginia, practicing Sports Medicine and Orthopedic Surgery.

People have asked me if I don't fear reprisals from people like José "The Turd" Ochoa, or Sween, Kelman, and Eric Ward Carson.  No, I don't.  Were I posting lies, yes, I suppose I'd be scared.  But since it is just the sad truth that I present, I doubt any of them have the courage to look in the mirror.

Dr. Carson,

This coming May will mark the twelfth year I have been living with CRPS.  It has spread to all four limbs, and part of my face.  The pain is unrelenting, the disability total and permanent, and no one told me about the likelihood of spasms.  But then, not telling me anything was a major goal at the time.  The failure to administer stress dose steroids pre/peri/post-op, the ensuing adrenal failure and fall, requiring further surgery, and the evident development of CRPS -- followed by a malicious attempt to avoid prompt diagnosis and treatment -- it's still beyond the pale.

I developed chronic and untreatable osteomyelitis, and eventually, that left shoulder prosthesis had to be permanently removed.  Despite 5 years of surgeries and PICC lines, intravenous antibiotics, the infection remains, believed to be in the form of a "biofilm" community.  It spread to the right shoulder, as well.

I need to let go of the rancor I feel at the mention of your name or every instance requiring an explanation of the genesis of the syndrome, or the infection.  It's hard, for you have essentially gotten away with murder, and apparently are unrepentant.

The often repeated lie, that hubris is necessary to be a top-notch specialist, is the only thing I can imagine at the root of your psychopathologies -- which I suppose would be better described as your "alleged personal problems." 

Please don't allow your ego to so get in the way that you ever disable another patient like you did me. Mistakes happen, and then should simply be acknowledged and addressed.  Covering things up, dismissing your patients as ignorant wastes of your time -- that's where you do enormous harm.

I will never forgive or forget you, but I have to trust that the "system" keeps an eye on you, and that, in spite of your natural proclivity to refute any insinuation of error, you've traveled the length of a helpful learning curve. 

I know you're scoffing at this email.

I hope you've changed.

Sincerely,

The Retired Educator

Well... time to move on.  Try, try, to fake it 'til I make it!  I've some chores to do, some lovely creatures needing me, and the promise of a kickass fish dinner to fulfill.

I am grateful and happy for and about many things and relationships. For instance, Marmy has so come around in her feelings for me that I'm perpetually gifted with a soft 8-pound wad of fluff attached to my midsection.

The sun does shine, the flowers do bloom.  The kids break into a run for no reason, and Fred is as sweet as only Fred can be.


© 2013 L. Ryan Follow my blog with Bloglovin

Tele-Health Improves Clinical Care in CRPS

JOURNAL OF NEUROIMMUNE PHARMACOLOGY  
2012, DOI: 10.1007/s11481-012-9408-6


Making Connections: Using TeleHealth to Improve the Diagnosis and Treatment of Complex Regional Pain Syndrome, an Underrecognized Neuroinflammatory Disorder
Joanna G. Katzman
jkatzman@salud.unm.edu
Department of Neurosurgery, University of New Mexico School of Medicine, Albuquerque, New Mexico 87131-0001, USA


ABSTRACT:
Complex Regional Pain Syndrome (CRPS) is a common and complex, but often underrecognized neuroinflammatory disorder. This syndrome can cause significant intractable pain, worsening motor changes, negative sensory symptoms as well as autonomic, vasomotor and trophic changes. Primary care providers and specialists are frequently challenged with patients who present with unusual symptoms and are unsure of the differential diagnosis and best practices treatment options for CRPS. The Project ECHO Pain Team leverages tele-health technologies to connect clinician specialists and primary care providers in order to increase awareness and create knowledge networks regarding improvement in clinical care for patients with CRPS.

REFERENCES:

Arora S, Thornton K, Murata G, Deming P, Kalishman S, Dion D, Parish B, Burke T, Pak W, Dunkelberg J, Kistin M, Brown J, Jenkusky S, Komaromy M, Qualls C (2011a) Outcomes of treatment of hepatitis C virus infection by primary care providers. N Engl J Med 364:2199–2207 CrossRef

Arora S, Kalishman S, Don D, Som D, Thornton K, Bankhurst A, Boyle J, Harkins M, Moseley K, Murata G, Komaramy M, Katzman J, Colleran K, Deming P, Yutsy S (2011b) Quality profile: partnering urban academic medical centers and rural primary care clinicians to provide complex chronic disease care. Heal Aff 30(6):1176–1184 CrossRef

Berwick DM, Nolan TW, Whittington J (2008) The triple aim: care, health, cost. Heal Aff 27(3):759–769 CrossRef

Binkley KE (2012) Improving the diagnosis and treatment of CRPS: insights from a clinical immunologist's personal experience with an underrecognized neuroinflammatory disorder. J Neuroimmune Pharmacol [Epub ahead of print]

Burton R, Boedeker B (2000) Application of telemedicine in a pain clinic: the changing face of medical practice. Pain Medicine 1(4):351–357 CrossRef

Cook NL, Hicks LS, O’Malley AJ, Keegan T, Guadagnoli E, Landon BE (2007) Access to specialty care and medical services in community health centers. Health Affair 26(5):1459–1468

Cooper MS, and Clark VP (2012) Neuroinflammation, neuroautoimmunity, and the co-morbidities of complex regional pain syndrome. J Neurimmune Pharmacol [Epub ahead of print]

de Mos M, de Bruijn AGJ, Huygen FJPM, Dieleman JP, Stricker BH, Sturkenboom MCJM (2006) The incidence of complex regional pain syndrome: a population-based study. Pain 129(1–2):12–20

Goebel A (2011) Complex regional pain syndrome in adults. Rheumatology 50(10):1739–1750 CrossRef

Ingelfinger JR, Drazam JM (2011) Patient organizations and research on rare diseases. N Engl J Med 364(17):1670–1691 CrossRef

Marinus J, Moseley GL, Birklein F, Baron R, Maihofner C, Kingery WS, Van Hilten JJ (2011) Clinical features and pathophysiology of complex regional pain syndrome. Lancet 10(7):637–648 CrossRef

Meyer BC, Clarke CA, Troke TM, Friedman LS (2012) Essential telemedicine elements (Tele-Ments) for connecting the academic health center and remote community providers to enhance patient care. Academic Medicine 87(8):1032–1040 CrossRef

Singh G, Willen SN, Boswell MV, Janata JW, Chelimsky TC (2004) The value of interdisciplinary pain management in complex regional pain syndrome type I: a prospective outcome study. Pain Physician 7:203–209

Sood S, Mbarika V, Jugoo S, Dookhy R, Doarn CR, Prakash N, Merrell RC (2007) What is telemedicine? A collection of 104 peer-reviewed perspectives and theoretical underpinnings. Telemedicine and e-Health 13:573–590 CrossRef

I'm pretty sure I don't have cerebral palsy, YAY!

Here I sit, stuck.  Playing Taylor's "It's enough to be moving on..." in alternation with "Pancho and Lefty" by my dear, dear Townes Van Zandt.  I confess to an interlude by one of Dylan's worst.  Nope, not gonna admit which one.  Take a guess, why doncha?

Blue?  Clinically depressed?  I can tell you that in the second case, one gives a royal damn about the label.

Yesterday was spent freaking out a nurse practitioner who then called in my least favorite physician in the world, so that they could "upcode" my visit, I'm sure, to some ungodly ka-ching ka-ching cost that my Obamacare-inspired PCIP insurance coverage will pay without blinking a governmental eye.

He creeped up behind me, addressed me, as a vet might announce himself to a mildly feral kitten -- which is when I was able to add something to my list of why I don't like him:  He sounds like a girl pretending to be a boy who is sensitive and therefore, in his coiffed world, immediately likeable.

All he wants to do, he girl-whispers, is listen to my lungs and heart.  Ten seconds, tops.  The NP feels better,  now that he is of the opinion that I am not dying on the premises.  The entire ten seconds, he has his free hand pushing down on my left shoulder.  Wait! Isn't there something wrong in my presentation?  Right!  Now I remember!  I don't have a freaking left shoulder anymore, so that ten seconds was excruciating and I used it to explain my heart rate of 124.

"Oh, I am so sorry," s/he almost lisps, as s/he pats me on the freaking same spot.  He doesn't know that I know that he wears what must be a very elaborate hair piece.  I'm saving that for the day I really need it.

He's the PainManagement Dood, last highlighted in this blog, I believe, with this post, "The Cash Cow Blues."

You unsympathetic types out there are sniffing, muttering, "Well, why don't you just change doctors?" Well, welcome to the War on Drugs.  I am at the stage of CRPS (and, I reckon, chronic osteomyelitis) where pharmacological management is all that's left.  "Quality of life is what matters now," is how the NP neatly put it yesterday.

I found two great pain management practices and neither would take me on because I was solely managed by medication and would not require (nor allow) "procedures."  That's code word, usually, for sympathetic block upon sympathetic block, which I have done, and done, and done, to no avail.  So it's chichi toupéed pain management dood or no one.

But I like this new NP.  She thinks I'm reasonable.

Did I tell you that they drug tested me last visit?  And ushered me into a non-accessible to the wheelchaired-in-extreme-pain restroom for the Big Pee?  It was a riot.  I dropped the cup several times on the floor, praying that no one had sprinkled their cocaine on those questionable spots.

Great news:  "We found nothing in your tox screen except what we expected to find." Yay!  She reminds me that they do this every three months.  I tell her that's interesting, because that was my first drug test in 10 years.  She said, "I wondered how you were going to get along in that bathroom." I cracked my crack joke and she did not smile.

Anyway, we took one drug away, and added another that is very similar but less likely to make me suddenly bleed out, and, as I said, we established that using these more dangerous drugs is okay because everyone and their third cousins are in agreement that I have no more treatment options and that the goal, now, as approved by all the half-step-siblings, is "quality of life."  Unbelievably, these people actually shorten it to QOL.  Seems like an obscenity.

The reason the NP thought I was dying in her office?  Hypoglycemia.  Another side effect of the drug we eliminated.  Also possibly due to taking insulin and forgetting to eat.  So Fred was running down to the pharmacy to buy candy and I was raiding the treat jar they keep at the office check-out counter.  I couldn't explain myself, so I am sure the new employee on the other side of the desk thought me, at least, ill-mannered, as I grabbed one piece of hard candy after another.  Then she watches as Fred lopes in, breathless, and throws a chocolate bar at me and lobs over an orange juice.  She did great.  Smiled politely, as if being blitzkrieged by sugar fanatics was all in a day's work.  As soon as I could speak, I mumbled "blood sugar," and she added a nod to her smile.

Of course, now I realize that she was on the phone the whole time, having an earpiece 'n all.

I have treated myself to two things, even though I am also doing a Practice Lent.  I broke my café presse several weeks ago and have been living on coffee dripdripdripped through a Melitta filter.  Here's my thinking.  I am wasting coffee, as I require it very strong and the drip method needs a hunka-hunka coffee to make that happen.  So... ha!  Discover Card had its way with me.  They've made it possible to link your Bonus Points/$ to Amazon.  And that amount paid for my new La Cafetière café presse.  The goal now is not to break this one.

The second thing?  Nothing spectacular -- but we've found a brand of muesli that we like a lot, that is sold in bulk at Amazon, on the cheap, and is delivered to the front door.

Carbon footprint?  What carbon footprint?

If you knew me, if you knew me NOW, you'd be asking, "Hey, prof, what has got you so nervous that you're mired in all this minutia?" Well, smarty-panted Reader, I am to see the neurologist tomorrow, the famed hawaiin-shirted, always-sandled neurologist, who sometimes cries.  If he cries tomorrow, I am going to slug him right in the nose.

On this day of Small Anecdote, another one to bolster your faith in the medical system:  The nurse who called me this morning about tomorrow's neuro appointment said the good doctor needed to know if I thought my spasming was due to my cerebral palsy.

So my greatest joy thus far, and which shall buoy me through every suicidal moment of this day, was my immediate and assertive (not aggressive) response:  "I'm pretty sure I don't have cerebral palsy!"

Yay, me!

(Please excuse me, all of you who DO have cerebral palsy.  I'm classless, tasteless.)

She called back about 5 minutes later to apologize profusely, emphasizing that the doctor did, indeed, know whom I was as well as my "disease processes."  Her voice sounded all red and insecure.  I felt like saying they could diagnose me with leprosy, I don't care, so long as they treat the CRPS dystonia along the way.

"It's enough to be movin' on..."  Muesli, anyone?  How about a cuppa joe?

  

The Cash Cow Blues

Dear Readers:

It's Sunday, and I'm engaged in quiet rebellion.  In lieu of Priests for Equality's The Inclusive Bible: The First Egalitarian Translation, I just read Wallace Steven's Sunday Morning.  "Complacencies of the peignoir" and so on, an elegant paganism.  Today, the poem, like coffee and oranges, is compensation enough for imagined losses; The general flight of generic birds provides enough permanence to sustain the necessary fiction.

Oops.  Still there?

Typing is difficult.  Using the shift key, inserting accented vowels, fending off cat paws -- all these things, though, force me to use my left hand, now ice cold, withered, and tad bit purplish. In this precise moment, I am having no spasm, anywhere.  Were my head clear of fuzz, this instant could be categorized as phenomenal.

Since, however, my brain is encased in spidery filament, I will just do what I set out to do -- cobble together a few of the details that led to my recent downfall, in particular, the role of honesty and fear of litigation in the practice of medicine.  Let's be very particular and insist on the specificity of January 31, 2012, the day before I ended up in ICU.

It wasn't the surgery that occupied me.  It wasn't pain, even, or at least not my normal pain.  It was all about those bleeping spasms, those crushing and twisting events that put my experience of CRPS on a new level of fear.  Terror.

If you've been a Dear Reader for any length of time, you know that I'm defenseless against this permutation of CRPS.  The only measure deemed effective against this dystonia/movement disorder involves the drug baclofen.  People with CRPS and severe spasm usually cannot get sufficient amounts of baclofen without depressing respirations, etc., so the party line is that administration of baclofen via a catheter inserted into the spine is the best option.  Large doses can be given without the accumulation of deadly side effects.  Because I currently have infection assumed to be caused by implanted materials, and because my spine is riddled with microfractures due to osteonecrosis, the intrathecal approach isn't appropriate.

Which leaves me you know where and without a paddle.

I am a cash cow for Dr. PainManagement Dude.  I haven't seen him in 2-3 years.  Instead, I see one of his Nurse Practitioners or Physician Assistants for "pharmaceutical management."  Most of that time, I saw A, a wonderful NP who was mostly up to date on trends within CRPS treatments and research.  She pointed me in the direction of the sub-anesthetic ketamine experiment last year.  She left right after that, and was replaced by M, who left, and was replaced by another NP whom I had only seen once.  

Dr. PainManagement Dude told me early on in our relationship that there was no hope for me, no treatments left to try.  The more I tried, the more disgusted he seemed to be.  Finally, I learned to just show up monthly, grovel, pay my bills, and stifle any stray flares of optimism.

But on 31 January, I needed his help.  I had used and overused the brains and opinions of my very smart group of docs, and most everyone seemed to think that PainManagement Dude might hold the key to successful use of baclofen.

So I wrote him:

Dr. PainManagement Dude --

Hi -- Hope you are well!

I had my left shoulder prosthesis removed and a temporary antibiotic-laced spacer put in -- last week, by Dr. ShoulderMan at The Lone Alp Hospital (in southern Tête de Hergé).  This is a battle we've been waging, without much success, for three+ years now.  I am getting awesome care by everyone -- your office, Dr. MDVIP Go-to-Guy, and, of course, Dr. ShoulderMan.

In the course of all this, however, CRPS kept getting worse.  I think I have tried everything available in this area, and traveling just seems impossible now.  There remains a chance that I will give it one more go, if this shoulder infection problem gets solved, with Dr. Scwartzman at Drexel, but it will be years from now, based on his schedule/demand.  My hope has been that if the infection/inflammation could be "cured," then my pain levels would go down, not just in my arms, but overall. I still think that may happen.

It has taken me this long to understand how truly difficult CRPS is to treat.  I am slow on the uptake!

These are the things I need to ask you about.  Please excuse the more basic ones.  I am avoiding the phone because the spasm/pain situation makes it a waste of time for retaining any information [also, I tend to scream without warning]:

Which PA/NP is treating me?  I was so used to A, then adjusted to M, and now cannot remember whom I saw last, cannot find my paperwork. She was great, but who was she!?  [I can see now that this reads as a criticism, but I swear, Dear Readers, that I simply needed a name.]

I need some flexibility in scheduling with your office.  You all have been very accommodating, but I know a new "provider" may not be comfortable starting off that way.  Fred is having to take me to Dr. InfectiousDiseaseDude's office 2-3 times a week for blood work and dressing changes, on top of regular "stuff," plus he administers the Vancomycin by PICC line.  We're exhausted.  Anything anyone can do to reduce stress will be appreciated.  Every Monday and Thursday, we will have to be out and about until roughly 11 am, so is there someone we could see at your office between 12:45 and 2:00 pm?  If not, we'll figure it out...

The medication situation:  I have enough methadone (10 mg tablets, though, that I break in half) and endocet for about 3 weeks, enough amitriptyline for a few months, but whether I've enough baclofen is anyone's guess, as my need is rapidly changing. Dr. MDVIP Go-to-Guy has been prescribing it through my mail order pharmacy, Medco.  I have had to take more endocet and baclofen than usual in the past two weeks but am planning to taper back over the coming week. [I am annoyingly honest with my health care providers.  A few appreciate it;  Most cringe.]

SPASMS: In CRPS, I don't know what doctors call them -- spasms, cramps, dystonia, WHATEVER! I cannot tolerate them at their current intensity and frequency. You probably hear this all the time, but I did not know it could get like this. This is a whole new animal... Right now, I am at my "calmest" point in a week, and the pain with each spasm -- now in my hands (they flinch, involuntarily[?], about every 20 seconds) -- shoots up to 8-9/10, then down to my usual 5-7/10. Both legs can be involved at the same time, to the extent that my foot is pulled toward my head, my hamstring is pulled in a different direction, and now even my left hip joint is involved. The last round of that began at 8 pm and did not decrease enough to make any difference until around 9 this morning.  They spasmed throughout the day.  I had what seems to me a lot of baclofen already, buteven that, obviously, did not work.  I want to take as little as is necessary to relieve this horrid pain.   I think I will need both a short term and a long term solution, unfortunately.  Intrathecal baclofen is the usual long term approach but that probably isn't a good idea in someone already fighting an infection, plus... I just don't want it...

 

I am sure the correct response is to tell me to "come in to the office." I hope there is an alternative.

Thank you so much for "fielding" this email! I am trying to stay organized but it's hard.  Please tell me what is not clear and I will try to answer more succinctly.

I did not receive a reply from Dr. PainManagement Dude.  Instead, I got this:

Hi XXXXXXXXXX,

I was the nurse practitioner you saw at your last visit. It was good to meet you!
Please discuss with Dr MDVIP Go-to-Guy the amount of baclofen you can take safely and what else can be done to treat the spasms.
We require everyone on narcotic pain medications to come visit monthly for medication refills, so please make an appointment before you run out of medication. I have asked B from our office to call you about an appointment.
Have A Good Week,


ButterMouth, ANP

"Have a good week"!?  If only one of us had known how the week/month was about to unfold...
Proof of my capacity to "zip it," evidence of my claims of concision?  Here's my response to ButterMouth:

Hi ButterMouth,


It was good to meet you, too.


Thanks for your response.


XXXXXXXXXX

To any medicos out there:  Please allow your patients to be honest in their communications with you.  Please don't see legal issues under every rock, something sinister behind every inquiry.  Easy for me to say, I know, but then, whose blog is it, anyway?

When a person begs for help, please help.

February 1, 2012 proved to be a "Terrible, Horrible, No Good, Very Bad Day," in small part due to PainManagement Dude's studied non-responsiveness.  Shoot, he probably could not have changed the outcome... but I might have felt less abandoned, safer, might have had a little hope.

What worries him so about having a medical opinion, a suggestion, a possible way to proceed? Did he fear that his response might be posted on my blog?

Ridiculous!

the one where i wallow in it

i am way likely to delete this post when rational thought makes a reappearance; on the other hand, my growing, playful, and just darned whimsy-laden devil-may-care attitude might also win out, in which case i will likely shrug and deny everything.

of course, to shrug implies the possession of shoulders, and as i continue courting the opinions of every medic within a 150 mile radius of the Lone Alp smack-dab in the middle of Tête de Hergé (très décédé, d'ailleurs), the more i am convinced that The Shrug will not figure in my repertoire much longer.


--Opus for Shoulders (5 minutes) by Ruth Eshel.
Performed by Beta Dance Troupe from Haifa, Israel.

today, the fredster and i boogied over to the pain management people.  okay, so i am trying to sound important.  you know, like i actually have "pain management people."  what i *do* have is a wunnerful::wunnerful physician assistant with whom i meet monthly and discuss dogs, cats, ex-fiancés, life partners, the private lives of doctors, fred, the beach, the wunnerful::wunnerful-ness of being a bitch, sarcasm and sarcasm's failures, grandmas, the nature of pain, wii, and, occasionally, the pain of crps, avn, and the completely ape shit nutzoid condition of my infected and defective bones.

that's a lot to cover in just a little bit of time.  amazingly, she also manages to finesse the pharmaceutical management of my pain so that i exit their office with between four to six prescriptions, of which i usually fill two.

i consider her a friend, as she sometimes lets me weep, and does me the enormous favor of just letting me be.

it has been only in the last few months, though, that i've pumped her for insider information on The Shoulder Situation & Escapade.  see, she used to work for the brother of my orthopedic surgeon, as well as once having a position on the ortho floor (that'd be the fifth -- i know it well...) of his preferred hearsepital. oh, and i have deduced a quickie of a romantic relationship with my surgeon's PA.  it's a veritable hornet's nest of interwoven nonsense.

the short version of our october meeting can be read in my swollen red eyes, and this well-worn, well-loved quilt, completed by the memory of sammy nuggled in it to best share his warm commiseration.  i am admonished to take my pain medicines as ordered.  my vainglory is ridiculed, my legs, my arms, my face.

an antique kaleidoscope of broken bits of largely red glass.


--Opus for Shoulders 2 by Ruth Eshel.
Music: Deganit Elyakim. Costumes: Noga Weiss.

i watched fred -- in profile -- as he drove us home -- and knew as well as i know anything these days that i just cannot inflict much more of this on him.

or his beautiful profile.