Tuesday, January 12, 2010

Save the baby from the bath water!

The quote below was taken from the abstract for a study entitled Treatment of complex regional pain syndrome: a review of the evidence, by Tran DQ, Duong S, Bertini P, Finlayson RJ of the Department of Anesthesia, Montreal General Hospital, McGill University, Montreal, H3G 1A4, Quebec, Canada.

The study is published in the Canadian Journal of Anaesthesia, 7 Jan 2010.

"The available evidence does not support the use of calcitonin, vasodilators, or sympatholytic and neuromodulative intravenous regional blockade. Clear benefits have not been reported with stellate/lumbar sympathetic blocks, mannitol, gabapentin, and physical/occupational therapy."

This is probably one of those occasions when laypeople, like me, ought to refrain from commentary, as I am not trained in the statistical evaluation of a scientific study. Has this ever stopped me? Mwa ha ha!

It doesn't take much experience with CRPS studies to learn the pitfalls of the studies we hear cited so often: the sample populations are always too small, the conclusions as imprecise as the subjective measurements of pain. The exceptions are those efforts that detail some clinically measurable aspect of the disease. You know that already.

Nonetheless, I'd like to shout the [admittedly tenuous] conclusions above from the rooftops. Those treating CRPS, especially those treating newly diagnosed cases, need to heed the gathering warnings that the traditional Attack of the Blocks (do you hear the kaching:kaching of the procedurally-oriented anesthesiologist's cash register?) is no longer an acceptable response to nascent CRPS. Indwelling spinal catheters and neurostimulators also aren't turning out to be the longed for panacea. (For some reason, early on, I used to have dreams wherein I'd hear a baritone speaker talking about "bathing the spine in baclofen." I also once lobbied passionately for a spinal cord stimulator, until my compromised immune system rendered that impossible due to the infection risk.)

There are several studies that contradict this one about the influence of PT -- indeed, at least for children, extremely intense inpatient programs crammed full of entire days of PT have had near curative results. At the same time, most of us could testify to the terrible results we have when the physical therapist overprescribes or uses inappropriate modalities. I am still getting over the effects of having my entire right leg put into a machine that blew hay chaff round and round... Was desensitization the goal? I cannot even remember, so subsumed are my memories by the pain.

The subject of gabapentin is not one to address today. I tend to get overly worked up. If you don't know its sordid history, just plug "gabapentin fraud" into your favorite search engine. For me, its results will always be suspect. Yet, for many others, it has been helpful. Go figure.

It may be upsetting to see what you consider "tried-and-true" treatments declared invalid, or more correctly, insufficiently supported by research, but it is something that needs to be said, and faced, by both those who have CRPS and those working to find treatments for it.

Those of us with the disease tend to have a skewed point of view about the very meaning of effectiveness -- any relief at all, no matter how shortlived, has often come to be our goal. It is hard to entertain words like "cure" or "remission" (heck, even "treatment"!) when they no longer apply within our reality.

p.s. i am doing better. still pretty weak and tired, still doing more coughing than anything else -- but the emphasis is on *better*!

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