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)

too many words

in my previous post, i was unduly cavalier about my odd relatives.  my first electronic act upon getting home from the hospital friday evening was to jot down [or laboriously peck out on my lilliputian keyboard] an email to the best brother-unit a sister could wish to have. that's right, i found myself unleashing a week's worth of pent up emotion all over sweet Grader Boob -- the self-imposed and preferred nickname of my english professor sibling, forever wading his way through a swampy, gassy pool of purported essays and research papers.


he's been in the game a good 30 years, has Grader Boob, and still spends 45 careful minutes on 2-3 page bits of underclass erudition.  he provides the most helpful and attentive commentary these youthful writers are likely to ever receive. i'm not saying that 'cause he's my brother-unit;  i'm also saying that because his standards are not simply maintained over Lo, These Many Years, they are, if anything, more stringent.  it's a sign of hope for those of us who aren't as convinced of a cheery future based on what we witness in the classroom. 


you know, stuff like having your hip broken by a student because you were the only physical barrier to his escape from the police officer hot on his heels. and having your students steal your walker when you make it back to work after the hip replacement!  stuff like that.


yeah, i dunno why, but that large "instance" keeps coming back to haunt me and will always inform my assessment of today's yutes.


of course, that was my experience at the level of high school instruction.  there weren't, thank goodness, any corresponding moments of physical violence in my 19 years of university teaching.  


no, those years had other offerings designed to maintain a steady state of depression. 


you know, stuff like having college freshmen and sophomores assert that the crusades date from the early 1900s -- before the american civil war of the 1950s -- and after world war II, that awful conflict of the mid-nineteenth century.  this academic high point occurred during my oh-so-brief stint as a latin teacher.  decades of research in determining pedagogical best practices have shown that the intermingling of disciplines, in this case ancient history and classics*, leads to student confusion and decades of lower back pain.

* in case you were wondering just what sort of radical latin class i was conducting by my unreasonable expectation that tomorrow's leaders might see parallels between humanity's tedious insistence on holocausts in various guises across time... it was a freaking warm up exercise designed to seamlessly review a few expressions with bellum and to introduce a short essay assignment.  instead, my brain exploded.  for those of you interested, these chestnuts were to be the inspiration for those 2-3 sentence-long masterworks:

bella horrida bella  (Virgil)

bella detesta matribus (Horace)

bellum omnium in omnes

bellum domesticum 

Ibis redibis nunquam per bella peribis (Oracles of Dodona) [a teacher's favorite, this one]

honestly, i've no clue why my mind went on this bender but, as you know, the guiding philosophy here at elle est belle la seine la seine elle est belle is "whose blog is it, anyway?"


i blame everything on the nefarious influences of Grader Boob.  


has he made any suggestions to moi-même, as to how my writing might be improved?  yes.  one suggestion, repeatedly -- making me worry over the possibility of early onset dementia.


hmmm?  what?  oh... right!  "too many words."  

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

hi boob,

i spent the week in the hospital and am in a foul mood.  

you have been warned.

it was awful but could have been much worse.  i had the headache from hell, nausea and vomiting, topped off with more of a fever than "normal." called my MDVIP go-to-guy doc last saturday, taking care not to phone until he'd had time to get home after temple.  even though he encourages patients to call whenever there's a real need, i hate messing with anyone's sabbath.  god might get pissed.  so go-to-guy answered on the second ring and informed me he had just arrived in barcelona, to which i replied, "but you can still call in a prescription, right?"  


[i came close to demanding why he had not been available six hours earlier, that being the time differential between tête de hergé and spain, but managed to hold my tongue.]


so that's why his partner, dr. k, was on call when i decided i couldn't take this particular constellation of symptoms any longer.. then dr. k's aunt up and died and he flew off  to new york, making the time differences for my doctors simply untenable -- fred put one watch on each wrist but that only made things worse. 


i booked passage on the queen mary, anxious to keep up with the jet-setters in a manner befitting my socio-economic realities. but due to partner-man's in-flight telephonic insistence, we ended up at st. jo's emergency room instead.


why, yes!  that *is* the very same hospital what gifted me with crps to begin with, by a well orchestrated Sentinel Event back in 2002. had i lost my mind, returning to the scene of their crime?  well, yes, i suppose i had lost my mind... to a mother of a headache (imagine me, whimpering while rocking back and forth, to and fro...) and several days of high fever and nausea.  he tricked me, that wily partner, into expecting just a bag or two of fluids and some cortef.  


they wouldn't release me, of course, and as i was being wisked around the corridors and back alleys of that infernal place,  i decided to keep an open mind and a closed mouth... 


...until i couldn't any longer.  i managed four whole days without a single smart-assed comment, without any hint of the fear for my life that emerges whenever i'm within a nautical mile of that place.  did the fact that i was under a gag order by their risk management department legal eagles assist me in holding my tongue?  nope.  forgot completely about it.  fred's eyes bugged out.


how am i to remember that the murderous staff there cannot be held in any way accountable for their crimes against humanity? let's review, darling boob:  pounding head, empty and spasming stomach, high heat, extreme pain -- much of that pain from the pre-existing crap for which they are largely responsible -- adrenal (and renal!) insufficiency, lupus, avascular necrosis, osteomyelitis, and a partridge in a pear tree.  i think four days was admirable.


i strongly suggested discharge home to the hospitalist who rounded this morning. the bottom line?  despite kidney and sinus infections that were piddly and refusing to grow in cultures (that's my leitmotif), the ID docs decided it was my left shoulder at fault and ordered a CT scan of the whole area -- head, left shoulder, kidneys, hips, the squatters in my estomac, etc.  they even seemed to have clear ideas of why the pus in my shoulder wouldn't grow in the lab -- blaming the phenom on one of two sort of ordinary bacteria that have become resistant to antibiotics. since i am immunosuppressed, these average-joe sorts of bugs can be a problem. not the zebras doctors have been chasing for the past three years, but good old pedestrian plow horses.   


so we were all anxious to get the CT results.  i actually entertained thoughts of getting cured of these accursed bone infections! drum roll, please... because radiology, despite discussing the areas to be scanned with me, despite the written orders, despite doing preliminary imaging to make sure all was fine... radiology reported that they failed to scan the left shoulder.  


remember the port i had put in some time in march, before the ketamine infusions?  well, it has never been accessible for blood draws.  fine for infusions, but not available for anything else.  [grrr.]  the nurses, in attempting to explain to ID why some labs were not done, blamed the confusion on a member of the "iv team" who was supposed to draw the blood from my port...  i may have, kind of, sort of, sat there like a silent lump while the lying liars lied.  


yes, scientific method remains at its finest at st.jo's;  the brainiacs are still at the wheel.  


the thing that sent me over the edge, however, was the damned rsd/crps.  


fred and i have tried every trick we can think of, from making cute little signs for the bed, distributing informational fliers, having doctors write entries in the chart,  putting notes on the door, even suggesting it as a great topic for an in-service, etc. 


all we are asking is that folks not touch my legs and ask before touching my hands.  we have never had a positive response.  tell a nurse (or doctor or phlebotomist or tech) not to touch and you engender, apparently, that very urge in them.  the unfailing pattern:

me:  please don't touch my legs.  thanks!

health care professional:  of course not! [pokes at feet in order to feel pedal pulses, grabs calves for some unknown reason]

me [from the ceiling]:  DON'T TOUCH MY FREAKING LEGS!

health care professional:  you don't have to get nasty.  all you have to do is tell me nicely, profderien. [hates me for the remainder of my stay]

common variations involve "oh, i didn't think you meant me" and "i can't help it if the stethoscope around my neck swings down and hits your feet."

very, very, very disturbing?  since the declaration by the state that their screwup in 2002 was a Sentinel Event?  i kind of thought they would know by now what CRPS *was*.  it was disheartening in the extreme to find only two doctors (the ER doc and an ID doc) and ONE nurse who knew that it is a central nervous system disorder involving severe pain, allodynia, movement disorders, etc. -- just, in general, what it is about.

everyone else said yes when i asked if they knew what crps/rsd was (i unpacked the acronyms for them as well).  these folks all proceeded to then do you know what, leaving me on the ceiling again...  i cried, not from the pain, but from pure sadness and frustration.  the doctor who was in charge kept telling me it was a combination connective tissue disorder and cellulitis.  she apparently wrote that in the chart and the nurses all thought it a great quote.

my favorite moment?  two nurses leaning over, their elbows propped on the the footboard of the bed, staring at my feet.  one of them has a big smile on her face, and keeps advancing her index finger toward my swollen, dark-purple and decaying right foot, saying, "i can't touch this, hmm?  what would happen? i seen this before, ms. profderien.  this here is cellulitis.  you got to keep it clean. what would happen if i touched it, hmmm? we need to scrub this foot." she actually winked at the nurse next to her.  yep, she's gonna wash off discoloration from lack of blood supply and i shall be cured by soap and water.  i confess:  i didn't bother with please or thank you, or if you don't mind... and went directly to cursing at her.

okay, i feel better now.  
i guess i let things build up a bit too much.
okay, so maybe tears are still running down my moon face.

the ID docs want me to see dr. d (ShoulderMan!) asap.  it just so happens that i had already made an appt for next week, because the shoulder was getting pretty awful.  the best advice, though, was "go where they know you, know crps, and until you get there here are some antibiotics, stay in bed, but come back to the ER for a fever of 100.5 or higher." 


at that moment, the tech came in to check my temp, and it was 100.7!  we all had a good chuckle and then i went straight home where i promptly threw my thermometer away.  really.  i did.

i wouldn't mind one bit being something of an ambassador for crps, because it is very odd and despite not being all that rare, is something rarely encountered by your average medico. i am, for instance, my MDVIP go-to-guy doctor's only crps patient in 30 years of practice.  so i had to become an expert -- a dread occupation -- in order to get any kind of decent care. now, of course, go-to-guy is a crps pro.  


but to discover that the hospital that compounded error upon error such that crps was the end result has not even taught the staff to recognize it during the nine years since the sentinel event... leaves me tired, depressed, destitute -- and angry.

so much so that my dear brother has to field another rabid communication in a litany of rabid communications.

fred has had it,  is very tired -- of me, of everything.  i don't blame him at all.  just wish i could just wish it all away.

let me know more about classes and your writers... are you enjoying the reprieve from freshmen? i wish you knew how good a teacher you are. 

love,

your sister-unit, the gimp

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

Three Months Later: José Ochoa, *Still* A Big, Fat Turd

Do you remember the couple of posts wherein I called José Ochoa a turd?  No?  Well, you can read up on this poor excuse for a hackjob doctor here and here. 

Or you can keep reading this post, as I am about to call José Ochoa a turd one more time.  He's co-authored an eight-page article painting people diagnosed with CRPS as malingerers, as suffering from conversion disorder, or -- now isn't this kind of him to allow? -- as harboring "unrecognized pathology (lesions) of the nervous system."

He has built a lucrative career testifying about his [now very lonely] contention that CRPS does not exist. His forensic testimony has less and less influence as hard science advances, but his path remains littered with broken lives -- lives financially ruined, physically and emotionally devastated by his self-enrichment campaign.

Am I questioning the data he reports?  Not at all.

Do I propose canonization of people with CRPS, an affliction that only strikes the angelic, a syndrome often caused by work-related injuries, associated with legal action, and therefore never feigned by lazy dipshits? Nope!

I do protest the authors' simultaneous display of contempt for "the label" CRPS and their ready glee to paint all those diagnosed with CRPS with the same brush as those identified as malingerers.  In lieu of identifying the defects in the diagnosis process, they have assumed a character defect in the vast majority of real sufferers. 

It's tiresome, it's disgusting, and Ochoa needs to find a new way to invent scientific support for his true calling:  his own enrichment.

I am almost completely out of line in writing this blog post, but I really don't care.  I have not read the article I am maligning, would not spend the money to buy it or to subscribe to the journal, and have no basis for attacking the study results.

I am just mad that Ochoa has been published again, that he has found another means of advancing his loathesome small-mindedness and greed.

Don't get me wrong, I know that many doctors and most researchers are fully cognizant of his malicious intent. It's just that his energies would be better used -- and actually appreciated! -- were he to channel them toward, say, working with the IASP and their efforts to produce workable, effective diagnostic criteria for CRPS.  The data he is producing does nothing but make that endeavor even more worthwhile.  The better the diagnostic criteria, the fewer malingerers abusing the justice and health systems.

I am the last person to contest legitimate dissent, no matter the subject matter. But neither am I going to assert the rights of an academic who might, for example, publish work after work about the Holocaust as a fiction, no matter how well-documented. (I am not trying to aggrandize CRPS as a topic, that is just the first instance that came to mind. So let me add that neither would I debate The Texas School Board on textbook choice or history and science curricula!)

In the years 1997-2009, Dr. Ochoa has earned, according to his own testimony, between $300,000 and $400,000 a year -- over a 12-year period, he has made between 3.6 and 4.8 million dollars by denying the existence of CRPS. Given that there is no research that legitimizes his claim, it makes sense that he needs to publish something, periodically, that he can use to maintain his claim to be an expert. There simply is NO currently valid research to which he can point, beyond what he manages to publish.

God help the poor patient with CRPS whose unsuspecting family doctor refers him to The Oregon Nerve Center, to Dr. Ochoa. Hoping for treatment, these patients will instead be subjected to his pre-suppositions about their physical symptoms and psychological makeup.

The worst crime of all?  The delay in treatment -- which can obviate the possibility of a fairly easy cure -- that may result from Dr. Ochoa and his campaign against the existence of CRPS.

ABSTRACT
Neuropathic Pain Syndrome Displayed by Malingerers
José L. Ochoa, M.D., Ph.D., D.Sc. and Renato J. Verdugo, M.D., M.Sc.
J Neuropsychiatry Clin Neurosci.2010; 22: 278-286

Received October 27, 2009; accepted April 1, 2010. The authors are affiliated with The Oregon Nerve Center at Legacy Health Systems and the Departments of Neurology and Neurosurgery at Oregon Health and Science University in Portland, Oregon; Dr. Verdugo is also affiliated with the Department of Neurology, Faculty of Medicine, Universidad de Chile, in Santiago, Chile. Address correspondence to José L. Ochoa, M.D., Ph.D., D.Sc., The Oregon Nerve Center, Good Samaritan Medical Center, 1040 NW 22nd Ave., Suite 600, Portland, OR 97210; jochoa@nervesense.net (e-mail).

Among 237 patients communicating chronic pain, associated with sensory-motor and "autonomic" displays, qualifying taxonomically for neuropathic pain, there were 16 shown through surveillance to be malingerers. When analyzed through neurological methods, their profile was characteristically atypical. There were no objective equivalents of peripheral or central processes impairing nerve impulse transmission. In absence of medical explanation, all 16 had been adjudicated, by default, the label complex regional pain syndrome (CRPS). The authors emphasize that CRPS patients may not only harbor unrecognized pathology ("lesion") of the nervous system (CRPS II), hypothetical central neuronal "dysfunction" (CRPS I), or conversion disorder, but may display a recognizable simulated illness without neuropsychiatric pathology.
[You may read more HERE]








NOTE: The law firm had to take down this illustrious video because Ochoa sued them, saying it cost him revenue.  What a turd.  There's an excellent unbiased summation of the non-board certified Doctor Ochoa by the Third Circuit Louisiana State of Appeals Court HERE. As for what you would have seen in the video -- the patient being examined by The Turd asks him to be aware of the severe allodynia she has in her hand.  He proceeds to blow on it and also to pinch it -- saying, in what can only be the cutest SCOTUS reference of all time, that he was just removing the "pubic hair" that was somehow on her hand.  I say again:  turd, turd, turd.

Posted to YouTube by LawlorWinston | September 21, 2009, with this comment:

Here we see Dr. Jose L. Ochoa, a defense-retained expert, in a portion of his examination of a woman whom six other physicians, including another defense-retained expert have diagnosed with RSD/CRPS-1. The Plaintiff, who suffers from crippling neurological pain, has requested Dr. Ochoa not blow air on her affected extremities.

RSD is an abbreviation for "Relex Sympathetic Dystrophy", also referred to as "Complex Regional Pain Syndrome" (CRPS).

Dr. Ochoa has become one of the foremost experts used by Defendants in lawsuits involving RSD/CRPS by denying that this condition is an actual "diagnosis". His opinions have been stricken or otherwise disallowed as unscientific in at least three States.

[Trust me, I'd much rather be watching a video over at PTZ.  I keep waiting for Ochoa to be featured over there, but I guess Emilbus only has room for so many explosive pilonidal cysts.]

Extreme Unction: Last Rites of the Insured

Here we go, Gentle Readers, setting out on our first LIVE blogging event!

The occasion? If you will direct your eyes to the upper left corner of the page, you'll see a countdown clock, ticking away the seconds until I join the ranks of The Uninsured. See it?

As I write this, it reads: 1 day, 12 hours, 51 minutes, 35 seconds. 34, 33...

And so, down to the wire, with my sour stomach in a knot, I am getting ready to submit for refill as many prescriptions as I can -- because at the moment, I am covered at 100% for medications. That'll drop to zero in 1 day, 12 hours, 48 minutes, and 51 seconds. 50, 49...

Yes, right *now*, I am fulling covered for everything from hospitalization, tests, and office visits to durable medical goods (I'm tempted to try and get a new wheelchair while I can... but don't worry, I won't).

"How wonderful for you!" you may be thinking. Good thing you're not actually here. I might have to hurt you. I might have to explain that in order to reach this level of coverage, I had to bleed many, many dollars -- an amount far beyond what I can actually afford, such that now (1 day, 12 hours, 42 minutes, 6 seconds to go! 5, 4...) I am up the creek without insurance.

The pharmacy I use for all medications except the strong painkillers I take is only a few blocks away, part of a large national grocery chain. The drugs for pain I fill, monthly, in the pharmacy housed in the same building as my pain management doctor, so that the pharmacist knows me or can easily doublecheck my legitimacy. I fully understand -- dispensing methadone and endocet is serious business. I saw the pain doctor last week -- or rather, I saw the PA, who is infinitely more on the ball than he is. She, at least, knows how to keep a small measure of hope alive. Whereas he makes a Pointed Point of telling me, whenever he sees me, that there is nothing more to try in my fight against the pain, primarily from CRPS/RSD and collapsing joints -- except for pharmaceuticals. His average time with me is under two minutes, and given that this includes that Pep Talk? Well, it really is a freaking shot in the arm to talk to that... man. His PA, though, shares information from the conferences she attends, tells me of things other CRPS patients are trying, and tries to resuscitate my flagging faith in the medical arts. Through her efforts, I believe I am taking the appropriate amount of narcotics; When he was running my show, I was overmedicated. I would rather hurt, which I surely do, than be befuddled and vacant. It is a fine line and I am happy to have her help me walk it.

I didn't tell her I was losing my insurance coverage. I sat there, chatting away and panicky inside because I knew time was running out. The way this physician operates, you must make a $195 office visit every month in order to receive pharmaceutical pain management. He is a physiatrist -- a specialty foreign to most people. In fact, most times, when I write "physiatry," I receive kind corrections from people who explain that the correct spelling is "psychiatry." I don't mind. I understand how they might make that assumption! A physiatrist is a doctor specializing in rehabilitation:

Rehabilitation physicians are nerve, muscle, and bone experts who treat injuries or illnesses that affect how you move. Rehabilitation physicians have completed training in the medical specialty physical medicine and rehabilitation (PM&R).

In other words, my doctor resents like hell being asked by my s.u.p.e.r.b primary care physician to write monthly prescriptions for pain medications. He does not like to treat patients solely with drugs. It's confusing, sometimes, his attitude --which is fairly legible upon his face. He is so resolute about there not being anything else to try -- when common sense might dictate that he would be first in line in favor of alternative, and more permanent, measures.

In fact, he and one of his partners proved to be the roadblock preventing me from getting a Spinal Cord Stimulator or an Intrathecal Pain Pump -- both things that might afford me real relief. And now, of course, as it has turned out -- there is not a surgeon in the world who would agree to implant another foreign body. Until the source of this osteomyelitis is found, it is too risky. Even then, since I am now severely immunosuppressed -- well, blah. And bleck, too.

Now, of course, I have no choice but to tell him and the PA that I'll be paying out-of-pocket. I am scared he will say that he won't negotiate with me -- neither about price nor about frequency of visits. Perhaps he will seize this as an opportunity to finally dump me as a patient altogether.

Sometimes I wish I felt secure enough to tell him how I never take as much pain medication as I am "supposed" to... how I force myself to take drug holidays every few weeks... but I don't think his reaction would be positive.

1 day, 11 hours, 52 minutes, 39 seconds. 38, 37...

Well, there is no putting it off, this list of medication refills. The pharmacy I'm using allows for submission of refills via the internet, so I'm just clicking from this window to another to finally be done with this.

Since the latest Wordle Contest has been such a bust, maybe I should start a "Guess the Grand Total" Competition. The closest to the actual cost paid by BCBS gets The Castafiore for a day! It matters to me, the total, even when they pick up the final tab -- because I pay upfront, and then am reimbursed. I've never had too many problems with them refunding my money (in about 3 weeks or so) but, at the moment? I would not be surprised by anything that bleeping insurance company does...

It can be scary to put all of these things on a credit card every month, trusting that a refund will arrive in a timely fashion. For what it is worth, I pay my credit card balances in full each month. At least, that was my habit.

Here's the list, in no particular order. Last week, methadone and endocet were filled at a cost of $106.28 (remember, too, that these are the negotiated prices).

Prednisone (generic)
Hydrocortisone (generic)
Plaquenil (hydroxychloroquine, generic)
Lumigan
Nexium
Starlix
Glimepiride (generic)
Baclofen
Tizanidine
Amitriptyline (elavil, generic)
Alendronate sodium (fosamax, generic)*
Cymbalta
Lasix (furosemide, generic)
Zofran (ondansetron, generic)
Diabetic testing supplies**

PLUS -- I'll be calling my trusty pharmacist to see if I have any antibiotics with refills, just to have some on hand in case Infectious Disease Dood wants to give any another try.

*I'm filling this instead of Forteo. I mean, scope out how much that costs! I am afraid to charge it this final go 'round, because several times already, BCBS and my doctor have come close to brawling over it. I'll tell you a secret. Shhhh! We are. No, we were giving this daily injectable a shot (sorry) in the hopes that my poor disappearing, "avascular," and infected bones might be reincarnated. I do have severe osteoporosis, but it is as a function of osteomyelitis, severe AVN, and CRPS. If my s.u.p.e.r.b primary care physician had his way, I'd take both Fosamax and Forteo.

**Actually, I may pass on these. I am not technically diabetic. However, due to the combination of steroids and infection, my blood sugars have been too high. I know any doctors and diabetics out there are likely to curse me -- but I prefer not to do a lot of testing. The results don't influence what I do and I think the hemoglobin A1C is superior to my dripping blood all over the damned place. As I lose fine function in my hands? Diabetic testing is not so easy anymore.

There's been quite a lag in between the last paragraph and this one. I'm starting the daily afternoon climb of Febrile Mountain, and that, combined with pure anxiety, has left me acting much like someone hopped up on speed. I've dealt with paying the mortgage, VISA, the electric and gas bills, as well as the phone and internet.

I had a brief internal debate as to whether or not internet service should continue to be a necessity, or whether it was a luxury I cannot afford. The decision -- to keep it -- was based on its capacity to entertain and distract me, lessening the need for breakthrough pain medication. Does that sound strange to you? Hmm. It probably does! Makes perfect sense to moi. Also involved in that decision is the fact that The Fredster, La Bonne et Belle Bianca Castafiore, and
-- though she doesn't think I know -- Marmy, all rely on the internet as well.

I may start passing the hat, though! Uncle Kitty Big Balls is in charge of Feline Accounts Receivable and has hissed in my general direction that some "accomodation" might be possible.

Anyway... so I've been wasting time, trying not to deal with this Final Rite of the Insured. Did you know that "Anointing of the Sick" has replaced "Extreme Unction"?

1 day, 10 hours, 46 minutes, 58 seconds... going, going, gone.

photo credit -- f 128 Simple, Strange, Roots Photography

Geoffe Haney is a photographer that holds a BFA in with a concentration in photography. He enjoys alternative process to make his images. He utilizes digital, pinhole, Polaroid and other methods to create the perfect image to his eye...

Prints are available in limited editions. If you are interested...He can be contacted by writing to geoffe@gmail.com

Crest, fallen

Sacré bordel*, what a day!

More fingerpointing, from one doctor to another.

From MDVIP-man, le boutiqueur(mot inventé, je crois!), I get: "I know it is hard, but hang in there." It's appeasement, a war of attrition. He believes there will be a crisis, through which all will mysteriously be revealed. His money is on this turning out to be some off-the-wall complication involving my lupus or some other connective tissue disease.

From the Infectious Disease Dood et al, I get: "Good luck! We have no idea what to do, and there are no antibiotics left for you to try!" Said with a smile!They want me to go to Mayo or Hopkins. They owe me over $2000 from overpayment -- this somewhat influences my opinion of them, especially since they made me jump through hoop after hoop to prove it. Qu'ils m'emmerdent? A massive understatement.

Finally, from the orthopedic surgeon's PA, I get: well... mostly I got a crestfallen face!

The Surgeon Himself was at the hospital, operating. Fine by me, because I like the PA, a lot. Not just because it turns out he is a neighbor of ours, here at Marlinspike Hall, deep, deep in the Tête de Hergé, but because he has taken much time and care to make me feel heard and understood. Also, he is very sharp, good at what he does.

A tradition has been birthed. Today was its first iteration, so hell, soon it will be a *trend*! It began a month ago, at the last ortho appointment. The incision from surgery #7 was finally beginning to heal, though serosanguinous stuff was still leaking out. Ortho Man, his PA, and I were struggling to find something about the situation to celebrate. Ortho Man laughed and said, "Shoot! Let's declare victory over the incision." And like bona fide idiots, all three of us sat there and cheered.

The PA badly wanted to continue the tradition, but -- hélas, I came bearing my latest labs, which were worse than any in the past year. Before he actually looked at them, he made a perfunctory speech about how this and that level might still be elevated from the trauma of the last surgery alone. I smiled politely. Then he reconstructed the timeline, realized that I had already had one lab with improved results -- from about 6 weeks ago. Ergo, these more recent ones couldn't be lauded as "still bad." Do you get my drift? Am I being clear as mud?

He made the same slick lateral move in a quick discussion about pain -- I am laying claim to a considerable improvement, except. Except when I use my arms! Ar ar ar! I didn't realize that on the left side, there is nothing cushioning the metal/bone intersection. If I had maybe given it a little thought, it would have been obvious... but to tell you the truth? I don't like to think about all the things they've done. Anyway, the PA opines that it will probably end up being quite painful on the left due to the thing contained not fitting the container (All those logic classes are paying off. Thanks, Professor Ryan!). So he decided, sort of on the fly, to say that it will be at least a year before we can really evaluate the pain.

I handed him the labs as he was putting today's films in the lightbox. He flipped through the pages, said, "Oh," and then sat down, deflated.

We danced the dance of "watch and wait," I stopped and spoke to a few of the very kind staff there (there's a guy in the outer office who is an incredibly positive person, who always remembers me, and knows pretty much what is going on -- he's good medicine!), and then we were outta there.

In honor of the movement to not speak of unpleasant things, I started humming when Fred wanted to know what had happened today. Hum hum hum. I also smiled, laughed, and changed the subject to the weather. The heavens, right on cue, opened a few moments later, and he had to concentrate on maneuvering through the heavy rain. Traffic, amazingly, kept moving. Hum hum hum.

Tête de Hergé's Department of Transportation doesn't have the greatest Maintenance Division and sometimes the potholes cause perilous weaving in-and-out of the five unidirectional lanes of the interstate. We all generally travel in the same direction here. If you absolutely must go against the grain, against traffic, fine -- take the scenic backroads route -- but be careful of the wagons and wandering dairy cows.

We were happy to see the exit to Marlinspike Hall, glad to go home, glad to have tea and soup, thrilled to see La Bonne et Belle Biance Castafiore, who is very contente to once again be starring in Gounod's Faust, pleased to pet the cats milling around our feet, mewling.

It's only now, Fred gone to an evening thing at church, The Castafiore cuing up her Faust discography, the felines napping after their full bowls of kibble -- only now that I will recognize my fever, the sweat pouring down my head, the legs purple, swollen, and cold, the pain, considerable. Hum hum hum.

*A native speaker will have to enlighten me as to whether sacré bordel is offensive or whether it is just one more sacré + object sort of ho-hum phrasing. A friend and I had it written on a birthday cake for our department chair back in the day -- a lovely man, rather circumspect, but sly, as well. I'm sure we had our reasons for choosing sacré bordel to be written on a celebratory instance of baked goods, but for the life of me, I cannot remember...

Insult to Injury

Adding to the list of things I pray never to experience:

Ambulance Drops Patient Mid Transport!

An Infinite Storm of Beauty -- Thanks, TW!

It was a heck of a day. Shades of Calling Dr. Hackenbush!

Part of the problem is that these days run together without any elegance, without any redemptive quality, without remorse.

I do something that might be called "sleep hygiene" beginning at 11 pm. This entails basic stuff: turning off the television and any other noise machines, including mp3 players, finishing the last e mails, the taking-of-the-meds, and the always important book selection. Next, I evict any living thing that does not have, as raison d'être, encouraging my goal of sleep. Fred? He guffaws, tries to dig in and watch the local news -- maybe even a few minutes of a late night show. The poor boy, he never wins.

Of the felines, Sam-I-Am is Master of Nuggling. He thoroughly gets the need, ably knows the terrain, has the most experience, and -- were I to actually sleep for any real period of time -- might hold the title of Sleepmeister of Marlinspike Hall.

Unfortunately, while I get good and sleepy from the drugs and whatever novel I'm reading, I wake again in 45 to 90 minutes.

For some reason, at that point, I am awake until about 3:30 am. And whatever happens, I am always definitively up at 5 am.

Why am I writing about this -- again? I dunno. I guess that as I dealt with the preop madness at the hospital this afternoon, I really was feeling the lack of reserves that results from that much pain and that little sleep.

I was Stupid.

The nurse doing all the work persisted in her cheerfulness, though it turned out she had a penchant for melodrama. From one moment to the next, my surgery risked cancelation, my blood type and crossmatch required stat calls to the blood bank, the chest x-ray and EKG needed repeating because -- DANGER! DANGER! DANGER, WILL ROBINSON! -- they were abnormal in April... on and on.

However, blessed be her name, because she was a fantastic phlebotomist. One stick, and she got it all, using the smallest of butterflies, barely inserted, and milking every yummy ruby drop.

I tried to lie to her several times and she caught me in every fib.

What, for example? Well, there was the pneumonia falsehood. It seems that if you have had pneumonia within the previous 8 weeks, you have to truck on up to Radiology for a chest film. We had just gone over the lackluster events of April, when it occured to her that respiratory arrest and being on the vent might have also been a reflection of some infectious process of the lungs, commonly named a pneumonia.

"Huh?" I said, in my best Stoopid.

"Let's look it up on the computer," she countered, in her finest Chirp.

My way? No problems, no additional testing required.

Her way? "Oops, it looks like some pneumonia *and* some pulmonary edema... Heart failure!"

More pecking at the keyboard, more Inquisition, more testing required.

Other lies included smoking history, and the fortuitous elimination of a few disease processes -- why not omit in the hopes of getting out of the hospital and into downtown rush-and-happy hour traffic by 6 pm?

As it was, we got there around 1 pm and left at 5:45. Fred is a trooper.

It is Magic Time again, so easily. Implementing Sleep Hygiene Protocol.

But tonight, my eyes won't work for reading, and are, in fact, crossing as I type. This isn't uncommon, and so I turn to my Brother Units for assistance.

Since Grader Boob is working out the kinks in his first summer school session in a long while, and is therefore in crisis mode (his favorite mode) and since I had not paid TW's blogs a visit in an obscene period of time -- well, TW it is.

Below are three photos he recently posted over at American Idyll. What I saw in them tonight was a wonderful flattening of the field. Color and texture harmonize (at the expense of the usually sought after sense of depth, that which is a canyon) to create a beautiful and complex flatness. I felt like I was looking straight into possibility of seeing both the forest and the tree.

They have been lifted from his entry for Tuesday, June 23, called An Infinite Storm of Beauty, in which he offsets them with this quote from John Muir:

"When we contemplate the whole globe as one great dewdrop, striped and dotted with continents and islands, flying through space with other stars all singing and shining together as one, the whole universe appears as an infinite storm of beauty."

QUINTUPLE SKULL

Courtesy of zenosaurus via Ian's blog:




He was born by caesarean section on December 25th, 1918, in Madison, Wisconsin. Nearly institutionalized at an early age, he surprised doctors with his above normal intelligence, unusual in such cases. He attended public schools in Madison. His bizarre appearance led to his being ostracized by fellow students. Outside of school one day, he was struck by an open beer can flung from the window of a passing car by some high school bullies. Slowing down, they taunted him with jeers, insults and threats. Speeding off, the car unexpectedly veered to the left, and struck an ancient Oak, killing three of the occupants. A fourth occupant became severely agoraphobic, and confined himself largely in his bedroom closet for the next 41 years. After this, he was left alone by other students. Three days after graduating from high school, he forgot to turn sideways while walking through a door (as he was forced to do his entire life) at a local candy store and knocked himself out cold. He was in a coma for three weeks. When he recovered, he was able to speak fluent Swedish. Doctors never resolved this mystery. Although he had a multitude of eyes, he was blind in two of them, having shot them out with a bee bee gun as a child. As a young adult, he dabbled in painting, and was barely able to make a living by selling his paintings on street corners or at local festivals. People purchased his paintings out of pity or because they thought it was cool to have a painting by that weird looking guy. Unfortunately, no surviving paintings can be located, and no image was ever recorded of them. However, it is said they were all signed with a one inch brush, dipped in Cadmium Red Medium, in Swedish. Andy Warhol is said to have purchased one of his paintings. When he was 25, he inherited a large sum of money from an uncle. He lived with his eccentric mother until her death a few years later. At this time, 47 cats were removed from the home by local authorities. He continued to occupy the house, until his own death in 1972. After his death it was discovered that he had a collection of 1,756 vintage ladies compacts kept in a shopping cart in his bedroom. He had apparently collected them from the local St. Vincent de Paul’s thrift shop over the years. He also had accumulated another 17 cats, one of whom had two tails, and another one of whom was probably half-dog. His body vanished from the funeral home while it was being prepared. Years later, a bizarre skull, matching his unique characteristics, was confiscated during a drug bust in Madison, apparently having been converted into a bong. It wound up in the possession of a distant relative, who had it restored, and then tried to sell it on Ebay. However, the relative forgot to indicate that it was being sold for educational purposes only, and the auction was cancelled. It was later obtained by the Anthropology Department at the University of Wisconsin, Madison, and added to a large collection of pathological specimens in the Social Sciences building. At this time it was photographed. When an inventory was conducted on the collection some years later, the skull turned up missing, along with the skull of the half dog/half cat. The skull clearly shows the ravages of his habitual candy consumption.

toujours, ce sacré miroir (et moi, là-dedans...)

I don't know what I am doing with this blog anymore.

Honestly, I'm not fit for human company. Unwashed, in the same clothes I wore yesterday -- I hurt so badly last night that washing and changing were unimportant. Sleep mattered, that was it. Even so, sleep came in spurts of 45 minutes. She's down! She's up!

La Bonne et Belle Bianca Castafiore gave me a look of pure disdain this morning. "Que t'es bête, prof... complètement bête."

To her, it is a matter of will, getting better, an area in which I am found sorely lacking. The fact that there are ungrowable pathogens destroying my bones, and apparently getting into some soft tissue (one side of my face is swollen, to the point where I have a permanent headache and my glasses are digging into the side of my head)? Not pertinent to The Castafiore.

Will it all away.

She is something of a changed woman these days -- being an out-of-work Diva has been both a curse and a strange blessing. Fred and I admit to appreciating the decline in the ear-splitting frequency of L'Air des Bijoux, and that blessed mirror, that laugh approaching hysteria.

You see, Bianca only sings L'Air des Bijoux from Gounod's Faust.

Not that this is at all out of the ordinary, an operatic star fixated on one role, one lyric, one composer. We all can get stuck on our favorite things, certainly on a cherished ditty. But..."Ah, je ris de me voir si belle, dans ce miroir..." -- ad infinitem? ad nauseum? I want to reach through the time and space of fiction to shake that stupid Marguerite, to point out the obvious devil traits before her in the unctuous Faust, all in the hope of getting La Bonne et Belle Bianca, the Milanese Nightingale, to shut up!

So she thinks I am an idiot. I can take it. She has called me worse things, in the middle of some madcap caper or other, usually seeking the approval of Captain Haddock -- what better way than to throw the extraneous French professor under the bus?

Feels like I've nowhere but *here* to emote; My thoughts are hardly worth noting anymore -- repetitive tripe.

I am spending the day making and fielding phone calls from doctors' offices. Now that there is a workable plan to put in place, there's nothing much for me to do except fret. And I am almost too tired and in too much pain to do that.

The current task is the assemblage of medical records that I am to hand carry to this guru of a medicine man, a mere half-day's drive from Marlinspike Hall, deep deep in the Tête de Hergé.

Ah... a wrinkle. Yes just in the space between the last paragraph and this. My MDVIP Go-To-Guy called to say I will likely see the Wizard next Tuesday. He paused and then regaled me with the heartwarming story of how, seeing that the Wizard-Guru Man has just relocated here from Ohio, he's not had time to establish his insurance connections. "That might be a problem for you," opines my Go-To-Guy. Bull Crap Bull Skeet of Tête de Hergé is an imposing monolith of a health insurer, indeed.

YOU THINK? GAWD...

Am I so sick that I am supposed to be able to magically bankroll this consultation? I have spent over $20,000 thus far this year on health care -- and that money came straight out of my investment account, the account that was not to be touched because it will hopefully, one day, have enough in it to comfort, shelter, and feed The Fredster and The Castafiore, as well as the Four Felines. It was never meant to be money spent on BCBS, hospitals, doctors, repeatedly unhelpful tests, and month after month of intravenous vancomycin...

That money was supposed to survive me, god damn it.

ah... je ris... je ris... de me voir... si bête, si bête... toujours dans ce sacré miroir...

The expert we are consulting doesn't even have an established surgical team, barely an office -- he is a new prof at the medical college there. Yonder. One of the administrators is going to attempt to get his provider numbers with Bull Crap Bull Skeet of Tête de Hergé tomorrow.

But everyone knows my situation vis-à-vis the paddle and the creek -- so I may have to write a magic check.

Cleveland Clinic, Hopkins, Sloan Kettering, Mayo, etc.

I was a mess yesterday. After being shown into an exam room at the Infectious Disease Dood's digs, after vital signs and the promise that someone "will be right with you," I sat there and cried. Not pretty crying, not the kind that can be hidden, oh no -- my sinuses clogged, my eyes nothing more than a mascara smear, the tissue box just out of my reach. (The handkerchief I normally carry had been sacrificed the night before to the cause of feline ear mites.)

"This is too much pain; I can't take it any longer," I told the walls.

When ID Dood's PA arrived, the water works were still in full force. Sniff, cough, cackle, cackle.

Somehow, my body knew we were all at a crossroads.

*Nothing* helpful emerged from the ID meeting held last Wednesday night, not a single workable idea. As she circum-and-cross locuted all over the place, it became clear that there was an expectation that my orthopedic surgeon would continue to slice me open every other month, clear what infection he could expose, until death us do part.

Sniff, cough, cackle, cackle.

As she led me back to the Infusion Center area, she promised to call the ID Dood himself. Oh great exclamations of intense and joyful expectations. Oh! Oh!

I scared the bejesus out of the nurse drawing my labs and changing the PICC line dressing. He was afraid to touch me, even with my sniffed reassurances that most of the pain was coming from my left shoulder.

It doesn't make much sense, but the pain derived from touch (this involves CRPS/RSD) is completely manageable if that touch is firm and fairly constant. That can even be pleasant. (Get your mind out of the gutter.) It's when people think they are soothing you, with light strokes and gentle pats -- *those* ways of touching are murder, like fire, intolerable.

And that darned nurse forgets those little details from week to week.

gentle pat light stroke {murderous thought} gentle pat light stroke {murderous thought} gentle pat light stroke {murderous thought} gentle pat light stroke {murderous thought}

The nurse/pharmacist was behind him, giving me looks of encouragement.

Sniff, cough, cackle, cackle.

About an hour later, the PA dropped back by to tell me that ID Dood has decided that I need "fresh eyes" to look at me from an ID-standpoint. She said the OS and ID Dood were going to put their fat heads together and come up with some referrals and they'd give me a call tomorrow (today). She made mention of a famous orthopod who specializes in the weirder instances of osteomyelitis.

When Fred and I toodled our way home, I wrote the experience up and emailed my dear Boutiqueur, my go-to-guy for things medical.

I took my breakthrough pain meds plus some ibuprofen.

This was The Boutiqueur's response:

La Bonne et Belle Bianca Castafiore,

It's very hard for me to "run the show" with all the specialists at Hospital X. I have talked with both ShoulderMan and ID Dood before and am happy to call them again. You need to understand it's a very difficult problem that we are dealing with and they have most likely never had such a puzzling and "resistant" case before. It's uncharted territory. If Dr. ShoulderMan will not go into the joint again surgically (which I would understand) and Dr. ID Dood feels like he's exhausted all the possible antibiotics, then where does that leave us? Another opinion is certainly an option but remember you have some limitations with which Ortho groups or hospital you can go to due to the previous legal issues. [Due to a previously described Sentinel Event... for which *I* am being blacklisted!] Dr. C. is very well known for his expertise in joint infections but he moved to California last year. One of the other options is going to one of the Speciality Hospitals in another part of the country for an expert opinion. MDVIP has relationships with many of these (i.e. Cleveland Clinic, Hopkins, Sloan Kettering, Mayo, etc). In NY,. there is the best Orthopedic Hospital in the country called the Hospital for Special Surgery. Through MDVIP we have easy access in making referrals and getting appointments with some of the best specialists in the country. I think you may need that. Your insurance would most likely cover the cost of the tests and visits and you would just have to pay your way to get there. Flights are fairly cheap these days but I'm not sure of the lodging. La Bonne et Belle Bianca Castafiore, I think you may be at the point that we have to consider something "drastic" like this. Let me know what you think as we'c be happy to initiate the referral and get the ball rolling for you. I'm sure Dr. ShoulderMan and Dr. ID Dood would be in favor of a move such as this. Let me know how you'd like to proceed.

-- The Go-To-Guy Boutiqueur

So it is today now.

How would I like to proceed?

In order to make such a determination, the kitchen floor requires the business end of a mop and the toilet boil wants a scrubbing. Two of four cats need an intense combing, one a serious brushing, and the remaining Little Boy? Never-ending sessions of love, daubing his wounds with gauze.

The clothes piled in the bathroom should be washed, dried, and folded before I can give proper consideration to Medical Tourism.

It was hard for me to trust the orthopedic surgeon who has been caring for me this past year. He has a reputation as one of the best -- but reputations mean diddly to me now. I am a product of the best schools and training, myself, and I know how little I know! The OS who managed to screw up my life back in 2002? The nurses liked to tell me, in response to my aired concerns: "But La Bonne et Belle Bianca Castafiore, he went to Hah-vahd!" My current OS? He proves himself by being himself, and he *is* the best. He is straightforward and reliable. He's talented and kind. He has a great staff.

It was hard for me to get to the point of trusting him. I don't want anyone else to operate on me -- he knows the terrain really well now.

The question is not whether or not I am being petulant and contradictory, but rather whether or not I am so petulant and contradictory as to be a real and present danger to the logic necessary to a good decision!

(If anyone out there has insights to share... please do, as I am fresh out.)

When I find myself in times of trouble...

The thing is, it ought to boggle the mind, but it doesn't anymore. It made me laugh, that's about the extent of my oh-so-shocked reaction.

If you've been paying attention, you know that The Fredster and I have been loading up Ms. Ruby the CR-V a couple of times a week and heading down to the Infectious Disease Dood's Place, just for kicks. And once there, well, it would be rude to donate blood and run, so we usually stay a polite few-to-six hours.

We're almost family, at this point. We've witnessed firings and hirings, flub-ups and triumphs, all from the comfort of the Infusion Center. We even watched President Obama's inauguration there, a crowd of doctors and nurses, aides and techs, secretaries and delivery folk.

Fred even has an intense and personal relationship with their chairs... I think that he sleeps, these days, better when ensconced therein than at home.

Even if you haven't paid attention, you know that I've been feeling increasingly like crapola since my last hospitalization and requisite surgery to replace one clunky shoulder spacer with another, as signs of infection in the joint/humerus continue. See? Give me the slightest opening and I feel compelled to bitch and moan, loudly, and with great feeling. (It's not my fault. I'm sorry.)

The response chez the ID folks has been to steadily urge me to contact my orthopedic surgeon, which I was loathe to do, since Dr. ShoulderMan's response tends to be a surgical one (crazy, huh?). But I finally did contact him yesterday, through his nurse and clinical assistant -- via email.

The response?

"I just spoke to Dr. [ShoulderMan] and he wants you to contact your infectious disease dr. I am so sorry you aren’t feeling good. Let me know what the Infectious Disease dr. says."

MwaaaHaaaaHaaa!

Bless her bones, she is wonderful, as are the surgeon and the PA. I don't think it is avoidance or "the run around." I think they're right, actually. The orthopods have been working like crazy to stay ahead of the infections and to give me a functional skeleton. It may be something of an overstatement, but not in my present frame of mind -- I think they've saved my life a few times over.

The ID folks, on the other hand, have had the luxury of treating me as if I were an intellectual point of dry debate. Many is the time I've been tempted to call out: "Point of order! Point of order!"

We cannot keep doing surgery after surgery -- the risks are clearly too great.

Anyway... I don't know what I am supposed to do. My "concierge" doc, The Boutiqueur, has to stay somewhat on the sidelines, as he doesn't have privileges at the hospital in question -- most of his work and his colleagues are far across town. He has maintained a close telephone connection with everyone and sees me about once a month. But what can he do for me, in this highly specialized situation?

I guess I will keep taking my meds, showing up at my appointments, gritting my teeth through this pain, sweating through these fevers, hooking up to these vancomycin medicine balls, lusting for sleep.

Because who knows where I am supposed to find relief, or go for help when in trouble?

Mwa!
Ha.
Ha?

Hey, maybe this is one of the twisted ways people end up in the ED/ER, where their presence is, predictably, maligned...

As my stepmother used to say: "There ought to be a law!"

Catharsis, continued

I thought that hospitalists were internal medicine doctors, widely and deeply trained to deal with most every medical issue under the fluorescent lights of the hospital sky...

But I ended up being cared for by four hospitalists -- two were internal medicine doctors, one was an "intensivist," and the fourth specialized in "pulmonology." In addition, there was a cardiologist, a neurologist, my superb orthopedic surgeon's wondrous PA (Dr. ShoulderMan himself flew off to South America right after surgery), the pain management service (excellent folks), and the ID guru.

So explain to me how I ended up having to call my MDVIP (pseudo-concierge) go-to-guy from the ICU in order to get the folks listed above to actually *do* something that made sense?

Explain how my sore throat, which pre-dated the admission, was ignored -- how a simple order like lidocaine spray had to be made and remade three times, and the spray never arrived? Sounds like nothing, but it turns out it was a major deal. The ID's PA immediately added a Z-pack to the i.v. vancomycin yesterday -- and hooray, my fears of not-breathing are mostly allayed. I have to say that the PAs involved in my care hit homeruns -- they listened, they heard. She was the first to *hear* when it started, that it was not related to the intubation, that it was getting worse -- and to discover that the pre-op chest film already showed lower lobe pneumonia.

Ah hell. I need to get this stuff off my congested chest.

Interesting how medicos introduce themselves to patients, how they address the lazy bastards lolling around in those oh-so-comfy beds... A Bette-Midler look-alike was one of the internal medicine hospitalists. We first met while I was on the ventilator -- strangely lucid and trying to answer everyone's questions with paper and pencil. She had a lovely habit of not letting me finish writing -- trying to guess the next word, even grabbing the clipboard out of my hands and holding it up like we were doing a first grade show-and-tell. There was a complicated issue involving the interpretation of my echocardiogram, done a week prior to admission -- it had been misread (as a normal trileaflet aortic valve when, in actuality, it was a congenital bicuspid valve that was quite thickened and leaking, etc) and explaining this while intubated and hurting beaucoup was hard -- Bette Midler kept butting in. It took the cardiologist to save the day, as he muttered, "Let's just get another one..."

Bette never introduced herself. At all. The nurses, complete with eye rolls, did that for her. Two days later, back up on the ortho floor, she came charging into the room, threw back the covers, and began an unprecedented exam of my abdomen -- always top priority after shoulder surgeries. She looked vaguely familiar but I had trouble placing her -- she scared me to death. I kept saying "Who are you?" and she kept up her dedicated search of my belly. She was panicked, apparently, by the fact that my blood sugar had dropped into the 40s subsequent to an insulin injection. I was asymptomatic, drank some juice, and was given an i.v. dose of dextrose -- the blood sugar was up to 105.

She continued to ignore me, and began yelling at the nurse. I finally pretty much screamed, "Who are you?" The nurse placated her... I explained, upon her eventual introduction, that I was not "technically" diabetic, but that my blood sugar went up when infection reigned (as then) and when receiving stress-dose steroids (as I was then). I objected to the insulin, asking instead that she restart my oral meds, and allow me to finesse my hospital diet (have you ever looked at an ADA clear liquid diet??? It was all sugar!). She went ballistic and I began to regard her as an excellent cartoon.

I refused all insulin from that point on -- I mean, gee, an hour or so after getting the last injection, I had tanked -- duh! I had another medico reorder my normal meds, and never (well, only once) had another abnormal reading afterward.

Did she address the issue of me not breathing? The exacerbation-unto-hellishness of CRPS/RSD? The Fredster is convinced that CRPS/RSD is behind every symptom that presents... Did she take the time to go over the meds that actually were messed up? Do common sensical things like order the foley removed or discontinue the oxygen -- anything to expedite me getting the hell out of there and home. No, her last visit, announced by a tumbleweed whirlwind, consisted of her standing at the foot of the bed, both hands on my exposed, swollen, purple, ice cold, 10/10 pain-leveled ankles, saying something about the god-damned blood sugars and her objection to my use of oral meds.

She started a pain cycle that hasn't stopped yet. I was speechless from the pain, then in tears. I get that she thinks Amaryl will cause another "hypoglycemic" episode -- though pointing out the conspicuous role of insulin was futile.

She then gave me the results of several tests I did not have (MRIs -- impossible due to my bionic nature, and a TEE). I was also released with someone else's paperwork.

The other internal medicine hospitalist decided to go with the theory that the three episodes of respiratory arrest were due to seizure activity. He couldn't be budged from this opinion, despite the neurologist's own eye-rolling. I still have the damned goo in my hair from the EEG. I *have* a seizure disorder -- myoclonic -- but it is extremely well controlled and it's been years since it reared its ugly head -- I did not lose consciousness, or twitch, or nuttin' -- during the first two "episodes."

The pulmonologist was interested only in my lungs -- fair enough -- though he missed the preexisting pneumonia and decided to ignore the low O2 readings (and related alarm beeping beeping beeping beeping) during the last 24 hours there. He repeatedly asked me if I was sure I wasn't on oxygen at home. I repeatedly said something like "Hmmm, let me think. Ummm, no!" Still, he did his job, stayed within the lines of his "scope."

The intensivist? Crass as hell, rude, probably never heard a word I said -- and was the best of The Hospital-Acquired White-Coated Creatures. He made soliloquies, overweight, shakespearian as all get out. The one that allowed me to somewhat trust him? "You are in the worst possible place for your CRPS. There is nothing but stimulation down here..."

Geez. So many cooks, none really giving a damn about quality control (and very bad about passing on information one to another, failing to order schtuff because of the assumption that this was someone else's domain), never taking a history, even.

I woke in the wee hours of Tuesday morning, reached for a pen to write Fred a note, and was unable to grip it. I've had radial nerve palsy in that hand before -- but now it was the whole hand that wouldn't work. I found this alarming. Not one nurse, not one doctor took it seriously. I know that time is the cure -- but given everything that had gone on, I needed to hear that. My left arm was twice normal size following the surgery, so it mattered -- being handless. With a week's time, it has greatly improved, and now has an ulnar nerve distribution. As it happens, I see my neurologist on Friday, so at least it will get evaluated. What should a hospitalist do in this case?

I get the distinct impression that no one gives a royal shit if someone who was already pretty ill and disabled suffers worse illness and new disability -- I am a throw-away. Surely I am accustomed to things being bad, getting worse.

We would have been so much better served by remaining under the care of the orthopedic surgeon -- someone needed to orchestrate... even if the musical score sucks.

Whew. That's better. It wasn't my intent to relate so many pointless details -- but I was shocked.

The other shock was at the level of basic patient care. My sheets were never changed, except for a new top sheet whenever I managed to pour coffee everywhere. Smile. Fred gave me my one bath. The ICU nurse answered my request to "wash up" with: "Oh, they love to do that kind of thing on the floor. Let's wait..."

Thanks for listening -- whether you actually have or not. If not for the GD Sentinel Event back in 2002, would any of this be traumatic? I am trying to turn off the memory banks, trying to not fear you people... And the good definitely outnumber the bad. I think with great comfort and confidence of the respiratory therapists who saved the day, nurse Gwen who saved my life and gave all the glory to God (amazing, the number of nurses who want to PRAY with the patients! Oy!), Dana who kept me company during the last two beeping beeping nights, and who did some great nursing by violating orders and inventing a few protocols... And I am enormously thankful for the intensivist hospitalist and his direct approach, and for getting me breathing again.

Great food service, friendly housekeeping, stupid pain scores!