Friday, February 27, 2009

Andrea Gianopoulos

There seems to be a theme to these final days of February: Things that should not happen, that are not in the proper order of things -- things that weren't covered even in the small print of the contract.

Tony Tobin of the U.K. runs a Yahoo! health group that is information only about CRPS/RSD. He waxes and wanes as to when and what he posts. January saw only one message -- but February has been a flurry of activity. He doesn't judge the material he passes on although it is evident that most of it has passed through his savvy intellectual filters. He does not have CRPS/RSD but watched and learned and then became a virtual sponge for knowledge after his granddaughter was "afflicted."

So that's Tony.

He knows, it sometimes seems, everyone in the CRPS/RSD "community." He posted his 17th message this month about one of those people.

It is with deepest regret and great sorrow that I post this obituary. I have known Andrea and her family for many years and I am finding it hard to find words to express my feelings. So for now please just accept her obituary as my way of saying 'God be with you.'

Cutting through the blither-blather, here is the part that matters:

Andrea Lynn Gianopoulos

Andrea Lynn Gianopoulos, 26, of Lancaster, died unexpectedly on Wednesday, February 11, 2009 at Hospital San Jose in Monterrey, Mexico.

Andrea also moderated a Yahoo! health group, fighting fire with fire (and founded one other, of which, I think, she was the most proud --Fighting 4 Us ). In February 2008, she wrote a welcoming note:

Hey everyone out there in RSD land! I wanted to sent out the first
email of this group to get things going. I know there aren't a lot of
people in this group as of yet, but I want you guys to know that you
can invite ANYONE you want! The more people who know, talk about, and
read information on RSD, the better. So get talking people! Advice,
jokes, interesting news, WHATEVER! The more emails the better too!
Alright I'm going to get going but I will be here as your happy
moderator, ready to answer any questions or concerns. Till next time,
keep on Fighting!

Your happy moderator


I am not proud of it but groups like this one are as fingernails scratching on the blackboard. In general, I believe that people in the kind of diminishing-to-the-self constant pain that folks with CRPS/RSD live with should not gather in groups greater than three, and probably should be supervised. Ankle bracelets. Muzzles.

Nothing good can come of the congregation of either drugged out Pollyannas who believe in silver bullet cures (One day, they'll find the cure for this Beast, this Monster! Fight on! Rah! Buy a bracelet! Use Epsom Salts to draw out the poison! HBOT! Sign a petition! Use lots of exclamation points and emoticons!) or bitter bitter sufferers who are not yet resigned to their intractable pain. They curse a lot, threaten suicide, and emotionally blackmail everyone in the group. Eventually.

It's sad and I see it happening in almost all CRPS/RSD support groups. This may be silly, but I have some tonal and linguistic red flags to which I try to pay attention: "scripts" instead of prescriptions, "perks" instead of percocet, spread of the urban legends about the purportedly high suicide rate among "RSDers" (many doctors contribute to the myth, unfortunately, including one of the foremost experts on the disease, also the balletic and oft interviewed doyenne, Cynthia Toussaint, now predictably stricken with fibromyalgia.).

Choo choo! Toot toot tooot! Derailed train of thought, once again.

I, The Retired Educator, do hereby lay claim to the Fog of Anesthesia, in the name of Isabella and Ferdinand, Catholic Monarchs of a united Spain...

Another of Andrea's final posts is so typical of the harried sense of anxiety that chronic pain creates, as the days' sufferings accrete and fold, fold, fold over and into themselves, like air into a delicate batter. What? I can't help it... the Food Network is on.

She sounds like such a sweet young lady, determined to help anyone she can, but a bit lost, too. Her train of thought is about as clear and straightforward as mine. Her expressive style reminds me of a recent blog post by the Doc at Ten out of Ten, wherein he classifies patients by their communication acumen. Thus far, he has exaggerators, ill-depicters, stoic [doods], vagueurs, wanderers, hystericals, no/buts, and the positive-review-of-symptoms.

Choooo! Andrea paid no attention to the perils of internet overinvolvement -- perhaps she had never been burned or taken under the bridge and beaten by trolls; Could it really be that she was just unwaveringly good, unspoiled, a true optimist?

Hey everyone,

Yesturday, I got a message from a man who really wants our help. I
will not tell you his name, but I will tell you that his girl friend
is really...REALLY bad off. In the first email he just sounded
angry, and said that the local group he belong to didn't help. At
first I thought he was saying he was in pain and it was my group
that didn't help him. I sent him a rather abrasive email reminding
him that if they were saying it was my local group, that I needed to
know who was taking the name of Fighting "4" Us and just using it to
their benifit.

Well he emailed me back. He told me that it wasn't my local group,
but that it wasn't good for her. He said this was for his girl
friend and he was just trying to find help. He said her PCP has
dropped her, and for some reason her doctor won't perscribe more
scripts. She has thirty days till the script runs out and you all
know what that means. She's going to go through major withdrawl, and
is already talking about suicide. I can't tell you the man or the
woman's name, but can you all do me this: remind me where your from?
If you're close to their area maybe I can get them to talk to you.

I suggested that she join this group, but that was in an email I
just sent so I don't kow if it will help. Just tell me where you
live and I'll see what I can do. Because we want to help our fellow
RSDers...right? Thanks all and I hope to hear from you soon...

Your always fighting moderator,


Do you remember her obituary, way up above this word mess? Do you remember where she died? Yes, that's right. At San José Hospital Technological of Monterrey, Monterrey, México.

The research being conducted on the ketamine coma is taking place primarily in two places: at the San José Hospital in Monterrey, and Saarbrueken, Germany. Recently there was a mild uproar over a patient septic from MRSA (began as a pneumonia, which is pretty common in the treatment, but -- being MRSA -- didn't respond to antibiotics, then went systemic) -- that was at the German site.

Now we have this in Monterrey.

I'm just sayin'.

Because of the infections I have developed over the past year and a half, I had to drop the notion of either getting an SCS or a "pain" pump (intrathecal pump) or going for the gold and attempting to get on the ketamine coma waiting list (word is that it is a 2-year wait at present). Now, of course, I see horror-stricken faces when I broach the topic to my doctors -- the very idea that I would want to introduce more foreign bodies that might invite bacterial colonisation appalls them.

And my rumblings about the coma? They never really took me seriously. The sepsis of one patient and the death of another may be the death knell for this research.

And I don't know how I feel about that. It has been touted as a possible cure, and I believe 14+ people have gone into longterm remission. Here's a short blurb about it that I pulled from the informed consent paperwork for folks considering hopping on an air ambulance and flying off to Mexico:

The purpose of this research is to find out if an anesthetic called Ketamine
helps in the treatment of the Complex Regional Pain Syndrome (CRPS)...

If you agree to be part of this study, you will be given two drugs: Ketamine and
Midazolam that will put you to sleep. You will be asleep during five days by
means of continuous infusions (a quantity will be given continuously but slowly)
of these drugs. At the end of the five days the drugs will be stopped and you
will wake up. After the treatment you will take several tests to see if the
treatment worked completely, partially, or not at all. You will have more tests
every certain number of months during two years in order to observe how long the
effects of the treatment last.

On January 18, 2009, Andrea wrote in her MySpace blog:
Well as many of you all know by now I will not be going to Germany in February, but I am going to be going to Mexico! I will write in here and at the Fighting "4" Us myspace site ( about it as much as I can, and I should have wrote in this more, but there was so many feelings, so many things that had to be done, so many things to think about that I just didn't have the time or energy to come online and work through this. I was working on Fighting "4" Us stuff, however, but more behind the scenes then anyhing else. But OH how wonderful our site will be when I get back. There will be places for members to come on, it will have it's own blog....But that's just a preview of all the good things that will happen. But for now, some thoughts on going to Mexico. When I first found out that I would be going to Mexico, and when, I was overjoyed. I'm still overjoyed....but now the fear has set in. I have so many things I want to be and do...I have an entire list of them. I'd rather not take up so much room now, but when I start to check them off (and I will) you will hear about it. I'm just "a ball of nervous" as someone I know said. I guess that's all I have right now. Blessed be!

Someone has posted a banner on her MySpace page that reads: "Andrea doesn't hurt anymore."

Bless her heart.

Thursday, February 26, 2009

Brought to you by the letter C

In my world of acronyms for illness, things starting with the letter C have an unhealthy predominance.

I mean, it's hard to ignore CRPS -- not for one hour, one minute, sometimes it cannot be dismissed for as long as a second. Today is such a day, but I know that it can't stay this bad, that if I can break the cycle, or just get through it to the other side, it should "ratchet down" instead of up! Yes, a socket wrench just might be involved...

But that is not the "C" that is really bitching at me right now -- no, that would be the C-reactive protein value that my infectious disease doctor spoke with me about by phone this afternoon. It's 68. That's apparently way too high. In fact, the closest I have come to that during all these months of infection and inflammation is 18.

We went trucking off to another doctor's appointment today -- to see Dr. PainDude, my pain management guy. He is a physiatrist, a doctor specializing in what is called Physical Medicine. In other words, he is so bored by me that I have not actually seen him, except to shake his smarmy hand, in almost 6 months. Instead, I see his Nurse Practitioner. I have decided to be thrilled by that, after spending *way* too much time being pissed about it. Why? Because she is simply better than he is. She has made innovative changes that have positively impacted the quality of my life.

She has made innovative changes that have positively impacted the quality of my life.

I cannot imagine a more wonderful thing to say about someone who is managing an aspect of my health care (with my "partnership," yadda yadda). Really, I can only count three or four people that I could honestly put in that category. Everyone else is very competent. These others, though? These three or four? They are so beyond competence -- they have some aspects, each according to each, of visionaries. Beyond: that's really the right word. They see beyond where I am stuck today -- sometimes seeing trouble, sometimes seeing that I will come out the other side of whatever nonsense is bothering me -- unscathed.

The Infectious Disease people are not on my team. I just cannot resign myself to the notion that they are a permanent fixture. Still, I am spending way too much time at their offices and decisions are being deferred to them by some of the people I am touting as "visionaries."

They're okay, I guess. The trouble I have with them is that they are excessively reactionary. If I were to even suggest that my left nostril itched, they would order stat blood cultures x 2.

So at first, I was nonchalant at having a C-RP of 68. No biggie. But the voice on the phone kept saying "quite high, quite high, quite high." And the voice tossed in a high white count. (The incredible news? My sed rate was TWO!)

Then this person lied to me. My surgery was ten days ago. "Sometimes it rises after surgery, so we will check it again next week. It ought to start going down by then." J'étais tellement déçue.
My surgeon had already checked the C-RP in hospital and it was something like 14 -- he was pleased. That was, I think, about 48 hours out... *and* he explained to me that the reason people were deferring some decision-making about infection to the C-RP value was that it was very responsive, time-wise. That is (I am clear as freaking mud today) -- it reflects the current situation pretty well. He was further encouraged because the results were trending downward.

So ten days after surgery, one shouldn't still be getting values that have been skewed by the trauma of surgery itself. And should a change be effectuated, it won't take anything like a week for that to be reflected in the lab value.

It's a small thing, this lie. But I don't like it; It does not inspire confidence. Tell me instead how we are going to proceed should this mean I'm still "infected." Tell me, above all, that daptomycin is the right antibiotic for me to be infusing into my vein at night. Tell me how you know that without having recourse to a positive culture result. Are you making the assumption that treating for gram-positive bacteria is worth ignoring those sly gram-negative guys? Is it the positive MRSA that I had a few months back? Come on -- the intra-operative cultures did NOT grow it! It's just in my freakingly cute incubator of a nose. And one armpit -- a pit that had issues. (I'm just sayin'. I kept it as clean as possible under very difficult and hygiene-challenging circumstances. And then along came my friend Hibiclens...) It tested negative twice in the past three weeks.

Toot, toot! My train of thought runs away again. (As always, a very grateful nod to James Thurber.)

Before I regain the track... Sam-I-Am just got his comeuppance. I had been gnawing on the stray crust of bread on a plate next to the computer -- bread that was, mind, well-spread with hot mustard, all the better to go with the sliced turkey. Sammy grabbed the remaining piece of bread, fairly *slathered* with that mustard, and began his escape from the room. Like a cartoon, he came to an abrupt and startled halt as the mustard registered on his rough pink feline tongue. He dropped it -- mustard side down, of course. Oy, my carpets! He would pick the only eighteenth century Karabagh rug in the whole of Our Manor, Marlinspike Hall. Imagine the result of hot yellow mustard on this, one of The Captain's most prized antique rugs of the Caucasus:

(Somehow, despite it being "correct," I cannot bring myself to call this a caucasian rug.)

The CCCaptain. The CCCaucasian rug. CCCRPS. CCC-reactive protein. CCCCCCCrraaaapppola!

I'd best stop this evidence of a meltdown before I truly get lost inside the alphabet. I am thinking of settling down with Fred and taking in a flick or two... popping some illicit ibuprofen to kill this fever (100.5!)... maybe popping some corn, too.

I've neglected to write about the biggest C of all, cancer -- because I am tired and sad of thinking about it. In addition to its presence here in the blogosphere -- for young Henry died yesterday and my thoughts are with his mother, father, sisters, extended family, and ubiquitous friends -- it is striking down people in our real lives here, deep, deep in the Tête de Hergé. All of these people are valiant and victorious in living good lives and modeling a good death.

I received my copy of Hospitality today... Ed Loring wrote, in an article that includes the news that Murphy's cancer is back (Our Cancer Journey Number Four, he calls it) -- "Time comes. Time goes. We are born. We die. As Dylan Thomas grieves past grief knowing "that good night" is somewhere amid the stars, he laments for me and maybe for you:
Oh as I was young and easy in the mercy of his means,
Time held me green and dying
Though I sang in my chains like the sea."

He, Murphy, and Hannah attended Jack Edward in the days and hours before he was killed. Jack said to them that he was prepared for death but not ready for it. And so, of course, Ed cannot resist asking us:

"How about you? How do you want to die? Are you prepared? Where you gonna run to when the FBI eyes you?"

I cannot think of Murphy without thinking of Lucy.
Enough! Enough, already!

Wednesday, February 25, 2009

Intrathecal baclofen for CRPS-related dystonia

Pain. 2009 Feb 18. [Epub ahead of print]

Intrathecal baclofen for dystonia of complex regional pain syndrome.

Rijn MA, Munts AG, Marinus J, Voormolen JH, de Boer KS, Teepe-Twiss IM, van Dasselaar NT, Delhaas EM, van Hilten JJ.

Department of Neurology, Leiden University Medical Center, P.O. Box 9600, 2300 RC Leiden, The Netherlands.

Dystonia in complex regional pain syndrome (CRPS) responds poorly to treatment. Intrathecal baclofen (ITB) may improve this type of dystonia, but information on its efficacy and safety is limited. A single-blind, placebo-run-in, dose-escalation study was carried out in 42 CRPS patients to evaluate whether dystonia responds to ITB. Thirty-six of the 38 patients, who met the responder criteria received a pump for continuous ITB administration, and were followed up for 12 months to assess long-term efficacy and safety (open-label study). Primary outcome measures were global dystonia severity (both studies) and dystonia-related functional limitations (open-label study). The dose-escalation study showed a dose-effect of baclofen on dystonia severity in 31 patients in doses up to 450mug/day. One patient did not respond to treatment in the dose-escalation study and three patients dropped out. Thirty-six patients entered the open-label study. Intention-to-treat analysis revealed a substantial improvement in patient and assessor-rated dystonia scores, pain, disability and quality-of-life (Qol) at 12 months. The response in the dose-escalation study did not predict the response to ITB in the open-label study. Eighty-nine adverse events occurred in 26 patients and were related to baclofen (n=19), pump/catheter system defects (n=52), or could not be specified (n=18). The pump was explanted in six patients during the follow-up phase. Dystonia, pain, disability and Qol all improved on ITB and remained efficacious over a period of one year. However, ITB is associated with a high complication rate in this patient group, and methods to improve patient selection and catheter-pump integrity are warranted.

Tuesday, February 24, 2009


The Fredster just emailed me [from his office in another wing of the Manor, deep deep in the Tête de Hergé] this picture of Dobby. I have previously attempted verbiage about his incredible gaze, and this is maybe the best photographic example. According to Fred -- ATF -- Dobby simply sat in the box, staring at him, for roughly 20 minutes.

The fog of appreciation

This photograph was taken by Caroline Tallmadge.
Dr. Tallmadge is staff anesthesiologist at The Ottawa Hospital Civic campus.

I don't know if there is a scientifically proven relationship between increased stupidity and time spent under general anesthesia, but I certainly suspect one... and present myself as Exhibit A.

Three times this morning I have hauled myself out of bed, into the wheelchair -- the whole while calling upon the Grace of God and invoking the Names of Various Allied Deities and Cohorts -- out to the kitchen, the feline triumvirate trotting along in my wake, only to lose myself upon arrival -- feeling much as you might, right now, lost in an uncharted sentence.

My pain levels are out of control. I have a pharmaceutical arsenal that I can, and maybe should,
use to bring things in line, but I am also too easily woozed. (Okay. We have "woozy," yes? Then we also ought to revel in the intransitive verb "to wooze." Right? Right!) In my war against the woozies, drugs are the enemy. Still, the battlefield being my tenuous body::mind continuum -- consortium? consortia? keiretsu? -- there is an inherent obligation to preserve, protect, and defend the Constitution of the United States.


I made a request of the anesthesiologist last Monday that she seemed to regard as odd: to tell me in advance when she was going to launch me into the hinterlands*. This last surgery was the fourth major operation in six months and, paradoxically, the prospect of "going under" was increasingly terrifying. I tried to share this feeling with The Fredster but he chose to address it as a foolishness (not out of meanness... more out of denial... at the oddest moments he will tell me of whole days spent at my bedside, me unconscious and on a ventilator, of doctors warning him that I likely would die in the night, and how I wish I could take those memories away!).


Back on December 22, the last go 'round, I was in the middle of a private panic when I suddenly felt consciousness draining away -- and terror is the word, was the word. I need the anchor of knowing, of being prepared, of time to say "thank you." Odd, the thank you thing. It's so important to me, to be able to thank the doctors and nurses before I -- before I went wherever I was going. To the hinterland, behind the borders of the river. In December, despite what I am sure were major doses of amnesia-inducing drugs, I woke to the same panic that that swept me away hours before, and now -- 7 weeks later, the feeling really had not passed.

It felt like my dirty little secret, my personal island of insanity. I've had two "near death experiences" -- profound, even *gasp* very profound! -- and those experiences serve as anchors of calm, so the panic that has recently taken hold is not so much about death as it is about... saying thank you, and knowing that my thanks have been received.

And so it went that this slightly scoffing woman, standing behind my head and looking more at her monitors than at my scared face, gave me a good 15 seconds of warning and became the person to receive my gratitude.

I wonder if she might know what I keep going to the kitchen for?

Food seems likely. Or cat treats? Coffee? Tea? Cola? Juice? Medicine ball? Something to defrost? Or am I meant to go beyond, down the ramp to the laundry room? Hey. That's most likely... so I should turn back and grab a load of dirties!

In all seriousness, my cognitive abilities have taken a big hit. I cannot easily concentrate on a movie or for more than 10 minutes or so of reading. My memory seems impaired and my mood is particularly depressed. I do believe there is something akin to a "fog" that's directly attributable to anesthesia -- but I don't have the wherewithall to research it!

Really? I need to be imbued -- again, and now, in normal times, in this last bit of "ordinary" time -- with that pre-operative sense of gratitude**.

*hinterland in Wiktionary, the free dictionary:
The hinterland is the land or district behind the borders of a coast or river. Specifically, by the doctrine of the hinterland, the word is applied to the inland region lying behind a port, claimed by the state that owns the coast. [Such a beautiful word for the topography of the layers of consciousness, particularly when one tires of references to the peeling onion.]

**One can pay back the loan of gold, but one dies forever in debt to those who are kind. -- Malayan proverb (I love quotation sites -- This was the very first result when I searched for "Thank you" quotes and isn't it perfect? Would that I could so distill my chatter...)

sometimes a sister needs a brother needs a god

There are ghosts out in the rain tonight/High up in those ancient trees/Lord, I've given up without a fight/Another blind fool on his knees/And all the Gods that I've abandoned/Begin to speak in simple tongues/Lord, suddenly I've come to know/There are no roads left to run/Now it's the hour of dogs a-barking/That's what the old ones used to say/It's first light or it's sundown/Before the children cease their play/When the mountains glow like mission wine/And turn grey like a Spanish roan/Ten thousand eyes will stop to worship/And turn away and head on home/She is reaching out her arms tonight/Lord, my poverty is real/I pray roses shall rain down on me/From Guadalupe on her hill/But who am I to doubt these mysteries/Cured in centuries of blood and candle smoke/I am the least of all your pilgrims here/I am most in need of hope/She appeared to Juan Diego/She left her image on his cape/Five hundred years of sorrow/Have not destroyed their deepest faith/But here I am your ragged disbeliever/Old doubting Thomas drowns in tears/As I watched your church sink through the earth/Like a heart worn down through fear/She is reaching out her arms tonight/Lord, my poverty is real/I pray roses shall rain down on me/From Guadalupe on her hill/But who am I to doubt these mysteries/Cured in centuries of blood and candle smoke/I am the least of all your pilgrims here/But I am most in need of hope/I am the least of all your pilgrims here/But I am most in need of hope

Thanks, TW, for... well, you know.

Schooling me.

Letting me steal your photos, regurgitate your thoughts. No, that's not true. I am better than that. It is the shock of recognition. Here. There. It amazes me.

photo credit: American Idyll