This was originally going to be a ridiculously long post. K persuaded me to cut it in two, so it ends in a cliffhanger. This part of the story may give nonmedical people an idea of how difficult medical decision-making is when patients have rare or complicated problems. The right answer is not always obvious.
Ever since Dr. Hygeia, Greco-Roman Goddess of Otolaryngology, discovered that I had some truly nasty snot left over after surgery, life has been a whirlwind again. While this is no tumor, it's the biggest deal since my last tumor in 2005.
I had a follow-up appointment at Ben and Jerry's Hospital with Dr. Prince Clivus Jr. and Dr. Bug, the Downtown ID Guru, and they unexpectedly whisked me down the hall to the office of the Dr. Treebeard the famous ENT surgeon. (This sort of behavior is what impressed me about F'in Famous Cancer Hospital. There was a seamless cooperation among the specialties, so that when I, the patient, showed up to see one, I saw all three. Now, this part of Ben and Jerry's Hospital seems to work like that.)
Dr. Treebeard is a tallish, thin, late-middle-aged man with glasses, no beard, a gentle smile and air of self-assurance in his chosen field--radiation-induced osteonecrotic mutant booger clivuses from hell. This man makes his living fixing Okapis like me, often by grafting skin from somewhere else onto parts that wouldn't heal. (Makes you wonder how the real okapis got their zebra-like hind quarters. Trans-specific graft?) Usually, he is able to take local, redundant tissue, move it around, and cover the hole. However, I have had so much radiation and surgery to that area, there is hardly anything left there, and none of it redundant. So, he proposed that he might 'harvest' a piece of my inner forearm skin and attach it over my clivus, hopefully putting an end to this die-off-dry-off-bug-off (i.e., get infected)-cut-off (i.e., get surgery) cycle I have entered.
This sounds like a real barrel of monkeys. I haven't had a major surgery since way back in 2007, and if you don't practice, you get rusty.
To add to the surreality of the experience, he also proposed putting me in a hyberbaric oxygen (HBO) chamber for two hours a day 5 days a week for 4 weeks before surgery. (An HBO chamber looks like the suspended animation chamber in which John Hurt awoke during the first scene from Alien. Only, I will avoid getting too close to the slimey, egg-like things in the basement.) Anyway, with HBO, I'd get to catch up on Game of Thrones (not really - not the sort of thing you watch with nurses and other patients in the room), and the pure oxygen at 2.5 atmospheres would, theoretically, improve the oxygen supply to my clivus and surrounds. In the best case scenario, normal local mucosa would grow back over, and I would get 10 more sessions and a pat on the head, but no surgery. More likely, though, I would need surgery. Ugh.
So, Dr. Bug, Downtown ID Guru, called me the next day. He had given a talk on HBO and infection at a medical conference a few years ago. There was a lot of hype, but not strong evidence. There were studies that supported, and studies that did not support. The net effect looked like it approached placebo for dealing with infections, and there were adverse effects too.
My rule of thumb is that when the sum of studies shows a very small effect that approaches statistical and clinical insignificance, there is no real effect. This is due to something called 'publication bias.' Positive results are more likely to get published and thus factored in. The negative studies get filed away, because who ever gets famous publishing downers? (And yes, who expects the drug company to fund your next study if the last one you did laid an egg in public?)
Dr. Bug and I agreed that it might be a substantial waste of time and money, but also agreed that it made sense to do a literature search to see if any new data have come out since his talk or if there is some other way in which it might be helpful other than treatment of infection. After all, Dr. Treebeard, the Famous ENT Surgeon is no slouch and would not make such a recommendation lightly. (I'm told he is exceptionally slow and thoughtful with important decisions.)
Well, thanks to the best medical literature searcher I know (my K, my wife, and attorney by profession), I soon discovered that HBO appears to have very good results with radio-osteo-necrosis! In addition, it can apparently be used to improve the chances of success for exactly the kind of surgery Dr. Treebeard, the Famous ENT Surgeon was recommending.
The way that HBO is used in conjunction with a flap graft over radio-necrosed bone in a case like this is called 'the Marx Protocol.' Surprisingly, it does not involve the proletariat rising up and seizing the means of production, nor does it involve a duck. However, the Marx Protocol fits me perfectly. In a study of slightly narcissistic, white, upper-middle class doctor-lawyers. . . No. Start over. In patients with radio-osteonecrosis (bone that has died off from irradiation), after all the dead tissue has been surgically removed (as it was for me on March 28), twenty sessions of HBO can cause proliferation of new blood vessels, which prepare the site for a successful graft. Ten more sessions after surgery top it off can facilitate healing.
So for my particular problem, done in this particular way, HBO looks like a very good idea. As far as we can tell. Based on limited data. Probably. We think.
Quick digression. Dr. Bug, Downtown ID Guru is probably as brilliant an infectious disease (ID) specialist as you can find anywhere. (Having almost been an ID specialist, I know plenty of greats.) However, modern medicine is so broad and complex, that no one can know all of it at all times. As Dr. Mark Crislip, an ID specialist and blogger puts it, "it's like trying to drink from a fire hose." If you step a little bit out of your are of expertise, you often will not have the answer at your fingertips.
So, if you, as a patient, are a horse (e.g., have an ordinary heart attack, pneumonia, or whatever), your docs have probably dealt with dozens of horses, so you are probably in good hands. When you become a zebra (maybe a more than a couple of common problems at once, or one strange problem), or worse, an Okapi (me and a few other weirdos), you have to stay on your toes and double check things. Get second opinions. Look stuff up (using reliable sources only). Trust, but verify. (Who said that line? One rhetorical dollar for the right reference.)
Okay, back to the story. All of this has to happen very fast. The longer I breath on this radiation-damaged, but living bone, the more likely it becomes that it will dry off and die off, making the Marx Protocol useless. The graft could die in less time than it took the Paris Commune (and no, lefty friends, it's not too soon to joke about that). Thus, the clock is running, and there is an army of insurance bureaucrats arrayed against us to make sure we either cannot get what is needed on time, or we go bankrupt.
Stay tuned for more madcap clivus adventures when I update with what would have been the second half of this post1