I passed the first hurdle to getting in to see The "Special K" Dood, apparently the only reputable doctor administering subanesthetic ketamine (following a reputable protocol, located in a reputable part of town, attached to a très reputable rehab center) in the Tête de Hergé region.
My Go-To-Guy MDVIP doc successfully paved the way with an unctuously smarmy letter of introduction and then bombarded the institute with hundreds of pages of records.
"You want my medical records? Are you sure?"
Documentation, we have. In spades. I am sure the staff at my Go-To-Guy MDVIP doc's place were enamored of moi all the while they fed the fax machine. I seem to recall big plans for an electronic record...
So now my big date is March 3, 2011. 10:30 am. I confess to turning down an earlier appointment because I don't want to haul Fred out of bed at the crack of dawn, if I can at all help it.
Now, the surprise. I've been there before. It's one of those experiences that I've tried to block out of mind, out of memory. The name has changed, slightly, and it's under new management, but they are working from the same database that is attached to the rehab institute, so I was already in their system.
It was a time of pure hell. I was still fogged under from the whole wretched experience of May 2002. (That saga is sketched out in this post: Nail Changes and Brass Tacks. If you're a medical type, all you really need to know is that this post bears the tag "Sentinel Event.")
In a twisted effort to protect itself, the hospital kept me from being diagnosed, trying to keep itself from being sued. So it took going outside of their incestuous referrals to a new neurologist before I got the diagnosis -- he gave the diagnosis immediately, and in response to my "what's that" query, retrieved an illustrated volume on CRPS from his office and let me thumb through the pictures. Someone had obviously been breaking into Manor Marlinspike in the dead of night and photographing my limbs. Good thing I now have my 13 ounces of Bear Repellent.
Anyway, I was lucky to meet this neurologist and am now very fond of him. I see him tomorrow, in fact. Hopefully, he's bucked up since our last meeting, when he devastated me by weeping.
After he convinced me and Fred that I did, indeed, have this funky disease CRPS, after he ordered the few and insufficient diagnostic tests available (temp testing, triphasic bone scans, nerve conduction studies), after beginning me on the typical list of meds, he sent me, post haste, to have sympathetic blocks. *That* is when I first visited the Diabolical Institute. Sometime in January 2004.
There are those who continue to maintain that sympathetic blocks can be a diagnostic tool. There are those who swear by them as always appropriate in CRPS, as being, in fact, the crux, the heart, the essence of treatment.
And then, there's me.
No, what is upsetting, and, yes, in my world, this is worthy of being upset -- what is upsetting is that some doctors, nurses, and physical therapists cannot wrap their minds around the fact that sympathetically maintained pain (SMP) is not necessarily what is going on within the spectrum of Distressing Things happening to their CRPS patients.
It is astonishing but I have met doctors who were considered CRPS specialists of sorts whose only intelligent discourse about the disease involves elaborate and redundant references to the sympathetic nervous system. Almost every one of them loved to wax folksy about how the light switches got flipped but someone forgot to turn them off chuckle chuckle chuckle.
I am sad just thinking how many people were probably told they were nuts because they "flunked" some idiot's idea of a "test" for CRPS -- a sympathetic block to which they "failed" to respond.
The sympathetic nervous system surely is involved in most cases, and maybe always very early on, which provides that brief little window during which blocks can be downright curative -- but that brief little window had long been shut by the time they "needled" me in the winter of 2004. I find more convincing science and understandable explanations coming from those who posit CRPS as a disease of the central nervous system... but maybe now is not the time to rehash the issue. And if that interests you, you probably know the arguments.
The only thing that matters, really, is that if you have SMP, then you are part of that lucky subset who may well benefit from sympathetic blocks, so please do avail yourself of them by finding an experienced interventional pain doc -- one who specializes in guided "procedures."
I'm at the point where I'm a poster child for neurogenic inflammation and edema, so far gone that pushing the reset button won't do squat. A serious reformat is my only hope! Wipe the disk!
My experience with sympathetic blocks was unfortunate. It was too little, too late, and proved to be pure torture. I had minimal response, that being a very slight change in temperature. One foot warmed up a little but not enough to impress anyone.
I was so programmed, at the time, by my optimistic new doctor and by the intense reading I had begun, that I expected a response, and was counting on it. In reality, that foot warmed up maybe 5-6 degrees then retreated into the icy deep freeze. In reality, there was no pain relief, but there were significant muscle spasms.
In spite of the evidence in front of my eyes, after each block I became upset when the focused and intense PT sessions that I read about never materialized. I think that the Resident Chucklehead at the time only managed to secure me some immediate post-block PT... once. And on that occasion, the physical therapist was overseeing about five people at once, and then had to rush home to her newborn who had a rash, or a fever, or was womicking, or something. Whatever it was, she left in the middle of my "session."
At my subsequent appointment for the next block -- the schedule was MWF -- I couldn't refrain from asking Resident Chucklehead why we were continuing with the blocks when they weren't working.
He had his back to me, was drawing up meds, and I was prepped, draped, prone. We were set to begin. He said, "I don't know. I guess it doesn't make a lot of sense, does it?" And then he strode in that chucklehead way to the table, ready to begin.
Hello? Hello? The conversation replayed several times in my head as the nurse tried to find a comfortable position for the blood pressure cuff.
"Um, Resident Chucklehead, sir? If it's all the same to you, then, I will pass on this block. I will just head on home..."
I saw him a few more times and we clashed, majorly, over the role of opiates in treating CRPS pain. It's a dialogue I am equipped to have today, but not then. Then, all I heard was rejection, abandonment, and condemnation to a world of pain. Now I know that the issues were not at all large, but really very small: he was interventional... that's how he made money. Managing some one's pharmaceuticals was not going to rake in the dough. A week after leaving him, I found (rather, my Go-To-Guy MDVIP doc found) my current pain management doctor. He is a physiatrist and so he pursued some interventional stuff early on, with some success in pain from my AVN, but also has no problem managing my use of methadone and percocet.
He overprescribed during a period of time and I discovered the joy of methadone toxicity, which landed me in ICU three times in three short months. I have a freaky metabolic system, with non-functioning adrenal glands, which I believe caused my inability to process the dose he wanted me at. Since that time? I take at least 33% less medicine than he tells me to... It may be stupid, it may be silly, but I don't ever want to experience being over drugged again. As it is, I maintain myself on the edge. I know now that meds are not going to take the pain away and that I shouldn't expect them to. I get a predictable amount of relief with which I remain cogent and in charge. Mistress of my domain!
Resident Chucklehead wanted me to stop a fairly high dose of oxycontin "cold turkey." The sick thing is that I did it -- Fred says I did it out of, and with -- spite. He somehow made sure I got to Go-To-Guy just a few days into the endeavor, who promptly rolled his eyes, declared me Silly, and got me the appointment with Current Pain Dude.
About a year later, Resident Chucklehead became locally infamous for having financially mismanaged his little affairs, and when squeezed out of the practice, stole patient records with the assistance of his brother, the accountant.
Is there a reason why disreputable doctors/nutty health care professionals are so often associated with CRPS? I am thinking of Jose Ochoa. I am thinking of the RSD Puzzle Crazed Guy... Dr... H, something.. Dr. Hooshmand! The guy I almost saw, who wanted to send me home on self-administered ketamine infusions! The orthopod who said his instructional videos on Qigong were the cure and who then delivered an inspired infomercial before offering a cut rate price on his wares. The dentist who said that only litigious people get CRPS...
If you've never encountered Dr. Jose Ochoa, The Turd, here's a succinct presentation of his "beliefs," according to which he has lived a good life, raking in the dough as an expert forensic witness in hundreds of workers comp and malpractice cases. His article, "Truths, errors, and lies around 'reflex sympathetic dystrophy' and 'complex regional pain syndrome,'" was published in 1999 in the Journal of Neurology. My gentlewoman's reserved and austere opinion of The Turd can be found HERE, HERE, and HERE.
The shifting paradigm of reflex sympathetic dystrophy–sympathetically maintained pains–complex regional pain syndrome is characterized by vestigial truths and understandable errors, but also unjustifiable lies. It is true that patients with organically based neuropathic pain harbor unquestionable and physiologically demonstrable evidence of nerve fiber dysfunction leading to a predictable clinical profile with stereotyped temporal evolution. In turn, patients with psychogenic pseudoneuropathy, sustained by conversion-somatization-malingering, not only lack physiological evidence of structural nerve fiber disease but display a characteristically atypical, half-subjective, psychophysical sensory-motor profile. The objective vasomotor signs may have any variety of neurogenic, vasogenic, and psychogenic origins. Neurological differential diagnosis of “neuropathic pain” versus pseudoneuropathy is straight forward provided that stringent requirements of neurological semeiology are not bypassed. Embarrassing conceptual errors explain the assumption that there exists a clinically relevant “sympathetically maintained pain” status. Errors include historical misinterpretation of vasomotor signs in symptomatic body parts, and misconstruing symptomatic relief after “diagnostic” sympathetic blocks, due to lack of consideration of the placebo effect which explains the outcome. It is a lie that sympatholysis may specifically cure patients with unqualified “reflex sympathetic dystrophy.” This was already stated by the father of sympathectomy, René Leriche, more than half a century ago. As extrapolated from observations in animals with gross experimental nerve injury, adducing hypothetical, untestable, secondary central neuron sensitization to explain psychophysical sensory-motor complaints displayed by patients with blatantly absent nerve fiber injury, is not an error, but a lie. While conceptual errors are not only forgivable, but natural to inexact medical science, lies particularly when entrepreneurially inspired are condemnable and call for peer intervention.
With all of these whirling dervishes in play, this disease is a bear to navigate, and sometimes feels like eternal damnation come early.
But I am going to draw myself together one more time, and give it one more go.
April 3, 10:30 am.