Thursday, November 3, 2011

Feckless Fabiform Fistula, Batman!

The Fredster and I made an incredible team today:

  • We left the Manor on time for an 11:30 appointment to have my port flushed (still a questionable sounding activity, in my opinion... I hear someone hiding in an alley, wrapped in a trench coat, hissing, "Wanna get yer port flushed, Lady?"); 

  • Traversing the entire length and most of the width of the hospital campus, we scored a quick, if over-priced, spicy chicken sandwich which we ate in record time under the atrium sky, all whilst recounting amusing anecdotes, Steve Jobs' last words, and providing reconnaissance for one very confused old woman in search of her wayward nephew ("He's my ride!");

  • We arrived for the second appointment early, an integral part of the plot to make the office manager feel guilty, and therefore I was seen at 1:10 rather than 1:30;

  • After some minor difficulties remembering where we parked Ruby, the Honda CR-V, we loaded the wheelchair and zipped down the road about half a mile, pulled into some primo gimp parking, then made nice with Paindood's Evil PA, who was, as anticipated, her usual bitch self;

  • I grabbed the Rx, Fred called for the elevator, and we finessed the pharmacy's minefield such that I owed nothing for meds (and scored free parking, too!).

There were some perplexing moments, like the three identical compliments I received for an ugly toxic lime scarf -- chosen to conceal part of the old lady embroidery on my "wearable art" old lady sweater.  Oh, and the homicidal looks we got from our fellow waiting room denizens as we incessantly commented on the CNN closed captioning.  Hmm, and that smart remark by the PA about "admiring [my] spunk." 

Spunk?  I have spunk?
What is she trying to do, confuse me?

image from

The most perplexing of moments, though, may be the one to come.

The only appointment that really mattered to me was the second one, at the pleasant and efficient office of my MDVIP Go-To-Guy.  I cannot remember if I shared the excitement over the development of a FISTULA (woo hoo!) on the inside of my left upper arm... If I didn't, please feign excitement: now!

Look, you would be excited, too, if the only other way to culture the stuff growing in your shoulder joint and humerus were to let the orthopedic surgeon yank your prosthesis in exchange for an antibiotic-laced surgical cement spacer.  (Say that 10 times without taking a breath;  Think that once without abject weeping.)

Because the filthy low-down pathogen in my shoulders has thus far refused to grow in the laboratory, and has returned despite 42 weeks of intravenous antibiotic therapy using potent gorillacillens, despite seven major surgeries, heck yes, I hope that a clear culprit might emerge from today's relatively painless procedure!  My surgeon would love to have an advantage for once, before he has to give the reverse replacement a try -- something that's likely to happen before the end of the year.  If we identified the bacteria and found the correct antibiotic therapy to zap it?  Before the surgery? Happy dances of profound joy!  (Now with actual arm movements, too!)


My MDVIP Go-To-Guy's nurse may not have used the best of techniques when she swabbed the thick, yellow pus (with occasional bloody streaks... What?  You're trying to eat?).  For instance, she may have set one of the swabs down such that the tip was on the counter top. If there is growth in the lab, how can I trust that it isn't a contaminant... and do I bring that possibility up with anyone?  What if it comes back staph?  I have a MRSA history and spent most of ShoulderMan's hospitalizations in strict isolation.  Medical settings are purportedly rife with bugs...

I just went blank while it was going on.  She had to do a fair amount of physical cajoling and basically bullied the thing to get the samples she wanted, so I was sort of lost in Biofeedback Land.  As she was packing up the samples, my shocked mind replayed the images.  Is there a 15 second rule for bacterial culture swabs?

I must add that she's the best nurse I've ever encountered, that I respect her immensely, and even more appreciate the many ways she helps me -- over the phone, in person, and with an awesome and unerring eye for veins-that-will-give-blood.  For all I know, she had scrubbed that counter top just prior to my arrival such that it harbored not a single microbe.

So anyway... we did it, we made it to every appointment, and *early*, too.  I made a kick-ass roasted red pepper soup last night -- meant for the usual Wednesday Festivities that Fred enjoys with the Militant Lesbian Existential Feminists, except that only one of The Gang showed up, and she had to leave early for a dance class... so the soup came home with Fred.  Or that's the story the boy told, anyway.  

Soup with dark rye toast.  A bed.  Purple, swollen legs.  Purple swollen fingers.  A good book with just enough vision left to read it. The satisfaction of having made a dent in my "to do" list.  The hope of something identifiable and treatable growing in the lab.  The hope that nothing grows in the lab except what is in *me*!

Fred was heroic.  Fred is always heroic.

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

Oops.  Almost forgot.  Something did happen that I am working hard to forget but probably should work to understand:  Before we acquiesced to the sexiness of the spicy chicken sandwiches and the hard benches under the hospital atrium sky, we went to the cafeteria.  It was my suggestion, even, born of a fond recollection of their fine frozen yogurt.  Surrounded by medicos in uniform, covered in badges and stethoscopes, with pen lights and bandage scissors peeking out of huge utilitarian pockets... I kinda freaked out.

First, it was incredibly loud and busy.  Remember that I stay in the protective confines of the Haddock family's ancestral home, Marlinspike Hall, except for these exciting blitzkrieg-type forays into the Metro Lone Alp area in central Tête de Hergé.

Remember, also, that this is the hospital where the Sentinel Event (that pretty much ended life as I knew it) occured back in May, 2002.  Yes, it does seem ridiculous to say a Sentinel Event of such magnitude "occured." I never thought I'd lend it a passive voice.  Progress?  Regression?  Denial?  Basic bad grammar?

When I dress Fred in the adjective "heroic," this is what I mean:  He was ahead of me in the cafeteria, carrying two of everything without being asked, when I veered my chair to the one vacant area (by the salad bar, of course).  He must have sensed my distress.  That, or he heard the clunka-clunka of my defective left front wheel stray from his plotted course.  In just a couple of short, well-constructed sentences, he diagnosed my malaise and recommended an immediate exit -- which, I am convinced, saved both the day and my sanity.

I've long suspected that I have PTSD, as embarrassing as that is, given that what I went through is precisely nothing in comparison to the terrors behind the disorder in military and rescue personnel, in people who have been traumatized by real violence.  It was much worse early on -- back in the summer of 2002, I would relive the fall in the hospital ICU every time Erin, my physical therapist, tried to help me stand up beside the hospital bed we had to rent.  I was left with a huge fear of standing -- exactly what I had been trying to do when I went down in May.  Then, until my courage and physical strength was reestablished, I lived with unexpected fears, too -- of fire, of being trapped, of being alone.  It was truly ridiculous.  Let us say that to declare Fred heroic will never be an overstatement, so long as the memory of those awful days persists.

Now my "episodes" are restricted to actual visits to that hospital, seeing one of the guilty doctors or nurses, although sometimes just a memory or a dream can do it.

What must have really primed the pump?  Being hospitalized there last month.  Talk about rebirth of terror, rebroadcast of the ridiculous before, during, and after of the Sentinel Event... But explain to me how that brief visit to the cafeteria eclipsed even the admission as a PTSD trigger?

Therapy?  I don't need no stinking therapy... Besides, we'd have to travel outside the confines of Tête de Hergé, as there are no mental health disorders in the native population here.  Well, none they'll admit to, you know?  There is a huge substance abuse problem, in my opinion, but having the new treatment center located in our barn may influence my conclusions.  Most of the residents continue to be carnies and circus folk from beyond these borders.

Anyway, just this brief exposition has helped me put things back into a more proper perspective.  So thanks for allowing me, O Interwebs, to jettison that mental debris...

Therefore:  Good night to all, and sweet dreams!

*the first reading of the cultures, i am told, will be reported late monday or tuesday... 

Tuesday, November 1, 2011

Ten Articles, No Abstracts

This morning, I received a list of ten articles recently published about CRPS / RSD.  Unfortunately, I have no access to any of them, as they were published without abstracts and I am currently unwilling to buy articles or give in to any subscription strong-arming.  Still, here are the bare bones of the information for your reference.

from deviant art dot com

Chronic postsurgical pain after nonarthroplasty orthopedic surgery - July 1, 2011 Sugantha Ganapathy, FRCA, FRCPC Jonathan Brookes, FRCA (Techniques in Regional Anesthesia and Pain Management)
Chronic postsurgical pain (CPSP) following nonarthroplasty orthopedic surgery has a variable incidence and results in significant morbidity in patients. The etiology of this persisting pain could be because of a variety of insults during surgery including injuries to nerves and release of inflammatory mediators. Trauma is well known to result in complex regional pain syndrome (CRPS). Phantom limb pain frequently follows both traumatic and ischemic amputations. Both these conditions are well known to result in debilitating pain. Management of CPSP is not only dependent on careful planning of acute pain management but also the treatment of established pain. Preventive strategies include use of multimodal analgesia, preventing opioid-induced hyperalgesia, and use of regional blocks. Treatment of established CPSP will depend on its etiology. Phantom pain and CRPS can be difficult to treat once established. Many therapeutic interventions have been tried with variable success.
Article references are available HERE.

The remaining citations are all from the Supplements to the European Journal of Pain.  Supplements, unfortunately, do not have abstracts provided, but each article/communication can be purchased and then downloaded.  Of course, individual and institutional journal subscriptions are available, too!

Supplements to the European Journal of Pain (ISSN 1090-3801) are published under the title European Journal of Pain Supplements (ISSN 1754-3207). All subscribers to European Journal of Pain automatically receive this publication.
The European Journal of Pain Supplements is an official journal of the European Federation of Chapters of the International Association for the Study of Pain®.
The publication of supplements is subject to the approval of the Editor-in-Chief. All contributions for the European Journal of Pain Supplements are commissioned and no unsolicited material is accepted. Rapid publication is a feature of all supplements.

J.W. Ek R. van Dongen H. Samwel F. Klomp E. Draaijer  - September 1, 2011 (European Journal of Pain Supplements)

- September 1, 2011 (European Journal of Pain Supplements)

- September 1, 2011 (European Journal of Pain Supplements)

R.S.G.M. Perez - September 1, 2011 (European Journal of Pain Supplements)

Monday, October 31, 2011

Soft Paw [with a side of Sweet Honey in the Rock]

All you need to know is that you get to see "more Buddy," and we'll be fine, you and I, youse guys and me.

Don't worry, as soon as the need for a bathroom assumes gigantonormous proportions, I will find a way to exit this wheelchair and knee-knobble to the loo.  But at the moment, my legs won't work and I am -- as the Bible might put it -- sore irritated.  Sore afraid.  Sore stuck.  Not to mention sore sore.


archaic direly; sorely (now only in such phrases as sorepressed, sore afraid)
[Old English sār; related to Old Norse sārr, Old High German sēr, Gothic sair sore, Latin saevus angry]

Until then, it's cat videos and anything else that is both inane and distracting.  Oh, a new episode of Hoarders is on.  Be still my heart.  Quick, give me something to clean, a feline to brush, lint to pick, dust to scatter, a suspicion of dirt!  I bet this show has inspired a whole heck of a lot of cleaning in Amerika.

Okay, back to the subject at hand.  Mostly, that is Buddy the Freakishly Large Kitten Recently Discovered to be of the Maine Coon Variety.

I've previously explained that he is trained to the command "Soft Paw," by necessity, as his natural Paw State is far from being one of squishy-soft, pastel-colored angelic intentions.  His paws will one day be registered lethal weapons.  To the immunosuppressed among us, they are killers right *now*!

So the big-little guy loves to play Fetch with his mice, and will in fact, bug the badinage right out of you until you acquiesce to his every freaking fetching ploy and demand.  Mwa ha ha!  Help!  

In order to give the Soft Paw command some currency in the World of Buddy, we train him through his love of Fetch.  In short, we do what all animal lovers/owners do but I am trying so hard not to think of how I need to peeeeeeeeeeeee but cannot get out of this magnificent red Pronto that I will expound and pound upon the least little detail just to get through one more blessed [dry] minute.

Oh dear God, I'm gonna die laughing, at least.  Fred just flew by, telling me, at a high rate of speed, that he discovered that Marmy Fluffy Butt has organized the entire Feline Remnant of Marlinspike Hall such that Dobby the Runt and Buddy the Freakishly Large Kitten are pooping in one litter box, and urinating in a second one.  Marmy herself?  She pees in a third litter box, and poops... well, at the moment, she is pooping, very neatly and discreetly, right next to the paper we put down for her by the back door.  Right... the back door leading to the Private Palatial Porch.  Making yet another delightful obstacle to my getting out that door into the fresh, pine-scented air.  Wait!  That was yesterday's rant!

Anyway, God bless Fred.  Because I am not supposed to dabble in things kitty-litter related.  Also, thank the dear Lord that Fred shares every toileting detail with me as I would otherwise be oblivious to that important part of the animals' lives.  Now I know what Dobby has been whining about -- Marmy has extended the web of her powerful influence to actually designating which waste receptacles are to be used for which waste.  



Ah, yes!  Soft Paws.  I was able to make two very short videos of Buddy's training.  As usual, what I recorded turned out to be aberrant from the norm.  Dobby has become jealous of the Big-Little Guy and so his pink nose turns up quite close to the camera every time.  He's a bit of a diva.  And Marmy even has decided that there must be something inherently rewarding about this camera business, but when she pops up (she's the one who always looks a little confused), that scares Buddy in the extreme.  Her terrorism of him, early and often, is now paying its dividends.  In one of these videos, he has turned to chase the beloved mouse, after successfully tapping my hand at the Soft Paw command, and then he FREEZES.  That would be because Marmy Fluffy Butt decided to appear, just out of camera range.  It is a testimonial to her ridiculous power that the kitten nearly ceases to breathe, holds his crouch, and -- though we cannot see them -- allows his pupils to madly dilate as he points like a Bracco Italiano after feathered game in old Lombardy.

I've come to dearly love Buddy's face.  He is so clueless, you might think.  You might even hold this wrongheaded opinion for six months or so, and who could blame you?  Because until you have the chance to watch his cagey self on video -- hitting rewind with frequency -- you are fooled by the vacant expression, the goofy grin.

He's sly, this one.

He has developed little tics as he plays Soft Paw Fetch.  He wants to NOT tap my hand.  Or if he gives in, and goes for a tap, he wants to claw me to death, just a little.  But then he won't get the mouse.  So he bobs and weaves, ducks his head, does a little rope-a-dope.  Oh Lord, I have to pee!

If you see Buddy tap my hand but not receive the Fetch reward of a Tossed Mouse, it's because he forgot the soft part of the command.  When that happens, he does sometimes have to do some Quality Control calibrations, the first of which is always to offer his head as a paw replacement.  This is terribly important to him, so I give him verbal praise, but repeat the request for a Soft Paw.  It's cool, watching him weigh how much he wants what, what he's willing to do, etcetera.

All right, that's it.  I'll be right back.  If I drive the wheelchair to the threshold of the bathroom door and then throw myself forward with all my might, I am bound to hit porcelain of some kind.  Wish me luck.  If I am not back in 10 minutes, please, would someone call Tante Louise?

Sunday, October 30, 2011

Erroneoneousness, Amputation, and the Hole In My Arm

It's my usual promise of creativity in the pipeline, Dear Readers.  And in the excitement of the mean time, I bring you fresh research to consider about my main demon, CRPS / RSD.  That's what most of you come here for, if search terms are any indication of intent.  The rest of you?  You fall into the wonderful realm of the Unknown, and we loves the Unknown, we does.

I will share a bit of my excitement with you while I remain able to move my arms.

Having deduced, inferred, and otherwise concluded that certain chores will never be done unless I do them myself, grumblegrumblegrumble, no matter how freaking difficult that may be from an effing wheelchair while in a world of twitchin' pain and with one non-functional shoulder.  Oh, yeah, and while essentially blind! {peeking::through::my::fingertips::to::see::if::you::are::still::there}

Right.  Whatever.  Meh.

Having figured that tough one out, I spent five hours delousing the Private Palatial Porch -- the only luxe-level miniature submarine port in our hemisphere -- scrubbing it, hosing it down, and just generally pulling it back from the brink of bacterial disaster.  No offense to the Upper Crust with whom Fred and I share this emblem of Hoit-and-Toity, but maintenance, regular maintenance, is the magic word.  I wore out three brooms but rediscovered a still viable sense of generosity, squelched the embers of considerable resentment, and have a quiet, beautiful spot for tomorrow morning's coffee.

I was almost too tired to clean up after myself but the Marlinspike Hall Domestic Staff (genetically indentured and engineered for generations of livelihood!) recently published several lists of grievances in full page four-color ads in the Business Section of the Tête de Hergé Tribune --  and I am pretty sure those are lists I'd like to stay off of.  So I tidied up, put dirty rags in the washer, cleaned the cleaning tools, and headed off to the showers.

Damn, my shoulder hurts, I said to myself for the millionty-umpteenth time, as I pulled off the protective layers of sweatshirts and tees.  

For about two weeks I've been watching a small red spot on the underside of my upper left arm.  It kinda resembled a bruise but wasn't a bruise.  There was a bit of a lump in the tissue beneath it but nothing too odd or alarming.  It never changed colors, never changed at all, just sat there, all red, until the last few days when some of the skin began to peel off.  Also in a minor, shy, inconsequential kind of way.

So I was surprised to see a neat, perfect hole in the middle of the red mark, and drainage on my favorite (and only) Patagonia organic cotton orange tee shirt.  [Patagonia stuff drives me nuts.  I wants it.  I wants it bad.  But the prices?  An insult!]

Anyway, yeah -- a tunnel, a sinus, a fistula, an everlovin' hole in my arm!  Are you thinking what I am thinking?  Well, are you?  Okay, if this is the first (last?) post you've ever read here, maybe not.  But if you are a veteran of the Shoulder Wars, if you support your local orthopedic surgeon with unbridled fervor, as I do, then yes, you are probably thinking:  Culture that Mother Fucker!  That has gotta connect with the infection in the bone, don'tcha know!  This could be the answer to the whole mystery -- this could be the annoying pathogen that refuses to grow in the labs or to die from the antibiotics!

So my fingers are fairly on fire with the urge to call a doctor and share that I've produced a draining hole in my arm, in the same arm from which we are preparing to yank the shoulder prosthesis because of unrelenting infection... but, of course, I don't scratch that itch.  

I slapped a band aid on the tiny hole and its tunnel, and will patiently await the arrival of Monday morning office hours, when I will politely telephone my MDVIP Go-To-Guy so as to get a culture of that Mother Fucker!

I knew you'd want to share in my excitement.


Here are the two articles of CRPS interest that landed in my mailbox today:

J Bone Joint Surg Am. 2011 Oct 5;93(19):1799-805.

Therapy-resistant complex regional pain syndrome type I: to amputate or not?


Center for Rehabilitation, Department of Rehabilitation Medicine (M.I.B., P.U.D., and J.H.B.G.), and Department of Pathology and Medical Biology (W.F.A.d.D, University Medical Center Groningen, P.O. Box 30.001, 9700 RB Groningen, The Netherlands. E-mail address for M.I. Bodde: E-mail address for P.U. Dijkstra: E-mail address for W.F.A. den Dunnen: E-mail address for J.H.B. Geertzen:



Amputation for the treatment of long-standing, therapy-resistant complex regional pain syndrome type I (CRPS-I) is controversial. An evidence-based decision regarding whether or not to amputate is not possible on the basis of current guidelines. The aim of the current study was to systematically review the literature and summarize the beneficial and adverse effects of an amputation for the treatment of long-standing, therapy-resistant CRPS-I.


A literature search, using MeSH terms and free text words, was performed with use of PubMed and EMBASE. Original studies published prior to January 2010 describing CRPS-I as a reason for amputation were included. The reference lists of the identified studies were also searched for additional relevant studies. Studies were assessed with regard to the criteria used to diagnose CRPS-I, level of amputation, amputation technique, rationale for the level of amputation, reason for amputation, recurrence of CRPS-I after the amputation, phantom pain, prosthesis fitting and use, and patient functional ability, satisfaction, and quality of life.


One hundred and sixty articles were identified, and twenty-six studies with Level-IV evidence (involving 111 amputations in 107 patients) were included. Four studies applied CRPS-I diagnostic criteria proposed by the International Association for the Study of Pain, Bruehl et al., or Veldman et al. Thirteen studies described symptoms without noting whether the patient met diagnostic criteria for CRPS-I, and nine studies stated the diagnosis only. The primary reasons cited for amputation were pain (80%) and a dysfunctional limb (72%). Recurrence of CRPS-I in the stump occurred in thirty-one of sixty-five patients, and phantom pain occurred in fifteen patients. Thirty-six of forty-nine patients were fitted with a prosthesis, and fourteen of these patients used the prosthesis. Thirteen of forty-three patients had paid employment after the amputation. Patient satisfaction was reported in eight studies, but the nature of the satisfaction was often not clearly indicated. Changes in patient quality of life were reported in three studies (fifteen patients); quality of life improved in five patients and the joy of life improved in another six patients.


The previously published studies regarding CRPS-I as a reason for amputation all represent Level-IV evidence, and they do not clearly delineate the beneficial and adverse affects of an amputation performed for this diagnosis. Whether to amputate or not in order to treat long-standing, therapy-resistant CRPS-I remains an unanswered question.


Therapeutic Level IV. See instructions to Authors for a complete description of levels of evidence.

A pertinent read might be this Wikipedia entry on Evidence-Based Medicine.

infer what you like from
 my haphazard choice
of illustration... hmm, a stethoscope and money,
 medical research and money, hmm,
orphaned diseases and money,
invested ignorance, hmm...

The second item is an article of my least favorite type: the overview (and this one with a big freaking error in the first sentence of its abstract, too!).  Don't shoot the messenger and don't believe everything you read in Rheumatology.  Unfortunately, it's also been published through Medscape, so a lot of medicos will be influenced by its erroneoneousness.

That's right.  I said it.  I dared.  Erroneoneousness.

From Rheumatology

Complex Regional Pain Syndrome in Adults

Andreas Goebel
Posted: 10/20/2011; Rheumatology. 2011;50(10):1739-1750. © 2011 Oxford University Press

Abstract and Introduction


Complex regional pain syndrome (CRPS) is a highly painful, limb-confined condition, which arises usually after trauma. It is associated with a particularly poor quality of life, and large health-care and societal costs. The causes of CRPS remain unknown. The condition's distinct combination of abnormalities includes limb-confined inflammation and tissue hypoxia, sympathetic dysregulation, small fibre damage, serum autoantibodies, central sensitization and cortical reorganization. These features place CRPS at a crossroads of interests of several disciplines including rheumatology, pain medicine and neurology. Significant scientific and clinical advances over the past 10 years hold promise both for an improved understanding of the causes of CRPS, and for more effective treatments. This review summarizes current concepts of our understanding of CRPS in adults. Based on the results from systematic reviews, treatment approaches are discussed within the context of these concepts. The treatment of CRPS is multidisciplinary and aims to educate about the condition, sustain or restore limb function, reduce pain and provide psychological intervention. Results from recent randomized controlled trials suggest that it is possible that some patients whose condition was considered refractory in the past can now be effectively treated, but confirmatory trials are required. The review concludes with a discussion of the need for additional research.
Read the entire article in all of its shameless erroneoneousness  HERE.  

And I think I have shown remarkable restraint not to completely deep six this purportedly science-based piece of work for including references to, and citations of, that unmitigated turd, Jose Ochoa.  

Hmm?  What?  Oh, puh-leeze. The truth shall set me free and all that jazz.