Dear Jeanne -

I apologize if my hokum remark came across as insensitive. (In the back of my mind, I suppose I was worried that it might: which means it probably was.) I'm sorry.

And I was frankly unaware that HBOT relied on an active infection model for its usefulness in treating CRPS. Speaking of which, there's a good article on HBOT written for the general reader by one Patricia McAdams on the RSDSA website, which you can link to here: http://www.rsds.org/3/research/hbot_mcadamshtm.htm. The article cites Allan Spiegel, M.D., a neurologist who explains the likely mechanism of action as follows:

Spiegel says that HBOT supersaturates tissues that have been deprived of oxygen because of the swelling of a limb. Specifically, saturation levels of oxygen in blood and tissues increase 10 to 20 times while in the chamber. Further, HBOT has a tendency to constrict vessels by about 15 percent, which causes a decrease in swelling from the edema present in most people with CRPS.

In fact, I have heard it speculated that HBOT works by actually forcing oxygen into the brain itself.

And I must have painted with too broad a brush if I suggested that I won't move off Square One unless presented with a double-blind controlled study. In preparing the article I did last year on RUL ECT as a possible treatment for CRPS, it became all too obvious how difficult (and expensive) it is to put together human studies that meet that standards of a major medical center's institutional review board. Still, that doesn't mean that doctors shouldn't try to move the ball forward for the benefit of not just their own, but all patients, when they have the opportunity to do so. Even a good case report in a peer-reviewed journal can be of enormous help to others.

This said, I suppose still I have a personal bias to disclose. My grandfather was an endocrinologist at the Mayo Clinic and was involved in a lot of the major public controversies in medicine of his day, from being perhaps the first high-profile doc in the country* to publicly support the concept of just pulling the plug on terminally ill patients in intractable pain - a radical idea for the Fifties on account of which he was actually barred from speaking at some medical schools - to writing against the food faddists of the late sixties, who claimed without any hard evidence that you could cure this condition or that with this sort of oil, etc. (Claims that were generally advanced without anything approaching a double-blind study, even in circumstances where putting together such a study wouldn't have been at all expensive.) In any event, after he retired he wrote a book he called "Americans Love Hogwash," and then through contacts secured the services of a top literary agent to peddle the book. Unfortunately, as funny and well supported as the manuscript was - or at least I thought so - the agent had to report his complete failure in securing a publisher after a couple of months of effort. Turned out that in the eyes of the publishing houses, general readers didn't want to shell out their time and money for a book only to be disabused of their hopes and dreams.

And as another aside, my wife and I are no longer seeing eye-to-eye on any number of things, that comes down to the same basic thing, whether or not it serves any purpose to believe in something just because everyone else does. (In the interest of keeping what friends I've got, I'll spare you the details.)

Now, as noted, there is a role for case reports in this world. Heck, my article on ECT consisted mostly in stringing maybe 50 of them together. But generally, you should expect to see them followed up with at least a small controlled study maybe three or four years later, unless where there's a reason why you can't do a double blind study: as in the case of ECT where I understand that everyone wakes up from the general anesthetic knowing whether or not they've been zapped. But I have seen over the last few years a good number of guys with proprietary interest in the positions they assert, having dozens of - generally unpublished - papers they've written on their websites, each of which just happens to circle back to the same tired old case report, if that. (True.)

Most good academic MDs that I know would have no problem, if the evidence changed, to abandon positions they had publicly exposed for years. (Reminds me of a couple of years ago, when a scientist at a symposia tried to trip up the Dalai Lama by asking him what he would do if science unequivocally disproved a major tenant of Buddhism, to which the monk responded, then Buddhism would have to be adjusted accordingly.) On the other hand, there are lots of folks out there who are so wedded to seeing their practice area as a series of marketing niches, not to be lightly disturbed. Some of the latter may practice out strip malls; others may be full boat professors at major private universities. (In the words of an old joke, we’ve already established what they are; now we’re just dickering over the price.) In any case, may we all be delivered from the hands of these learned men and women.

And may your daughter soon overcome the burden of this monster.

Mike

* By his own description – coming equipped with an outrageous sense of humor - he was "World's Greatest Doctor." And he proved it. On three occasions, traveling abroad to three different continents, he addressed and mailed a post card to "World's Greatest Doctor, World's Greatest Clinic, World's Greatest Country." And on each time, the card made it's way to his desk! (With the help, of course, of the folks in the mailroom, who knew whose joke it was.)