Something old

So instead of munching chips as the AFC championship starts, I'm eating soup, courtesy of the Beast. Things haven't been quiet  lately, merely dull, but the last two have been right up there: as in take the meds, go to bed and roll with it until the Klonopin knocks you out. Make observations in the right hemisphere.

Things are definitely going as they did in the beginning, before meds.  After some prelims in the maxillary branch,  the serious pain arises in the temporal branch, as it almost always does for me. But instead of dropping to the Gasserian ganglion and spreading out, it rockets through the ganglion into the main trigeminal nerve. The pain sensations then shoot along this line every 5 to 10 seconds, with the duration increasing until they almost, but quite, blend together. This is typical and a lot of fun.

Of greater concern is that this is the second Mankoski level 7 to 8 episode in a row. Until now, the nasty thing has just been playing with me,

Tic tic tic tic...

The other official name for trigeminal neuralgia---apart from the grim "suicide disease" label---is tic douloureux. Descriptions of the tic usually get sidetracked into describing TN as a whole, so I'll fall back on my own experience. Naturally, one does not stand in front of a mirror during a pain episode, so it's hard to say what this part of the tic looks like to others.  What I had taken to be the whole of the experience was what happens when an episode is producing Mankoski level 9 pain: clinically unendurable. In those blessedly rare episodes I have felt a twitching tremor in the affected side of the face. I'm glad to be alone when this sort of thing is going on. Apart from an uncontrollable desire to moan and lie in a fetal position, it's really too much to think that one's face resembles something out of a horror movie.

Recently, I ran across an article (which I neglected to link) that offered a broader definition of the tic element. It is, this author said, not just the tremor, but a characteristic scrunching up of the face in response to the pain. In short, the effect of TN is significantly to distort the features during the periods in which it is going on.
It included an image which I immediately recognised as my face in those happy times when I'm getting whacked by the Beast two or three times a day.

Faces tell tales, they say, and apparently the tale they tell for people with TN is what's going on behind the face. When The Beast has been shoved back into its cage, for me when it's warm and pleasant and even the stray breezes are good, people often comment on how much better I look. Evidently, that happens because they are now looking at a face instead of a tic.

I'm trying to relocate this article and I'll post a link if I find it: even though the knowledge offers one more reason to run and hide.

The ski area business model

A Reddit follower has been shocked, truly shocked, to find out that the overall sticker price for his emergency appendectomy was over $55,000, and that his (presumably) bargain-basement health insurance left him with a tab of about $11,000. He says he never before realised how much health care in the US of A cost. No doubt it didn't help to hear, from the provider and other sources, that his piece of the action is negotiable and that hardly anyone pays full price. This is why ski area lift tickets cost so much: the sticker price paid by the innocent minority has to bear the cost of the discounts given to the well-informed minority. Our hero was essentially invited to dicker instead of posting his original bill on Reddit, and of course he didn't know he could do this until after the hospital sent the bill.

This is the reality of my working life. In fact, before the holidays I was working something similar. Except that the payer was a client who was shocked that a spine procedure came with a sticker price in the same price range as that Reddit naif's appendectomy. After all, the client said, didn't we just negotiate a much lower price with the surgeon?

We did. But if you need a medical procedure and you settle up with the physician or surgeon, or with the hospital, you're no more than halfway there. In the land of the free the hospital and the physician bill, and get paid, separately, with very few exceptions. I fear that startled Redditor is in for another shock when he gets the surgeon's bill.

Now, consider how all this plays out for the chronic pain sufferer. It's no longer about one emergency procedure. It can often be about a lifetime of physician visits, punctuated by elective surgery procedures. This is the sort of person that pre-ACA insurers did not want to cover. The only benefit is that if you deal with chronic pain, your naivete goes out the window fast. You're obliged to become actively involved in your treatment, studying what ails you and querying your clinicians at every step. Instead of being shocked by an invoice, you anticipate the grand larceny that is American healthcare, work out in advance what you can pay, and shop around for the best deal.

Is all this necessary? No. Especially it should not be necessary for patients who may be spending much of their lives distracted by pain. Will the ACA fix it? Not entirely, because what we've done so far is only a tentative step toward a system that removes all the incentives for charges that are completely out of line with actual costs.

In the meantime, one can only hope that more people get the outrage.