Comments on life, the universe and everything from an aging Sixties survivor.

Location: Massachusetts, United States

Ummm, isn't "about me" part of the point of the blog?

Saturday, December 24, 2016

Year something or other

Well, the Beast is here. The current trio of medications is doing an adequate job of containment When I say "adequate" I think of how my nurse supervisor was explaining TN to my co-worker. She pointed out that when I say "no pain," it means "tolerable pain."

That's about right. I measure my periods of complete remission in weeks now, in the warmest weeks of the summer. The other end of the spectrum, of course, is the breakthroughs, the part that gets the physicians' attention. The other eight or nine months are the tolerable months: hardly worth explaining, even to friends and family. Some clinicians, like my boss, get it and don't push it.

For years, I have followed the request of the physician who first diagnosed this pleasant companion, and kept a journal of episodes and pain levels.  My favourite measurement is the Mankoski Pain Scale, which is more exact than the silly faces most such scales employ. For those with Tn, indeed those with most neuropathies, it has one weakness. It measures pain in part  by tying it to conventional painkillers. Because painkillers have no effect on TN at all, I just edit that part out. Because I live on a diet of anti-convulsants, there is also no point at which "medication not needed" applies.  To use the scale, I rely on the degrees of distraction Mankoski describes.

Journals get discouraging after a dozen years. The executive summary is that I've crept upward through the middle Mankoski levels, hitting 7 yesterday. It was at the end of the day, so there was no need to test my "effort." For me, TN pain doesn't interfere with sleeping, most of the time, although the hallmark of the more intense levels is that it makes getting to sleep difficult, until the evening drug cocktail plus Klonopin kicks in.

So here we go again.

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Monday, December 19, 2016


Strange, but neither my PCP nor the current neurologist had heard the expression "goofies" applied to Gabapentin side effects. I understand the expression comes from drug culture, but while the origins may refer to recreational drug jollies, the side effects of Gabapentin and Carbamazepine (Tegretol) aren't all that amusing. People who take these drugs are trying to get control of their pain, not trying to get high.

It is frustrating as hell to have the drugs that do control neuropathic pain, pain that nothing else controls, randomly turn on you. It's not pain, fine. But it's called goofies because it throws such treats at you as dizziness, disorientation, and distorted vision (because your eyes roll). That especially sucks when it happens whilst driving or doing some job that requires dexterity or concentration.

My two main drugs between them fill nearly two pages with side effects, and when one adds such extras as Clonazepam and Baclofen (or a few others I don't have) it's a wonder we can get out of bed. One couldn't, if one didn't spend several weeks adapting to the drugs. One can never be totally sure.

Goofies are on my mind because I've had them yesterday and today, today combined with a couple of moderate TN jolts. Life is fun.

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Sunday, December 04, 2016


It is the season of precursor pain, the dope slaps the Beast administers as a reminder that it is always there. Before diagnosis, I would get episodes three or four times a year, much like today's breakthroughs, two or three times a day, for weeks on end. Now it's usually just winter, but the precursor pain is a reminder: "Dude, you're just one chill too many, one late or forgotten dose, away from my claws. Beware."

In remission, one tries to live in the moment, with variable success. Precursor pain spoils that by changing the focus from the relief of now to the anticipation of what is to come.

I broke training and put one of my TN thoughts on Facebook a few days back. We had our first trace of snow, just enough to coat the grass, the deck, and the windscreen. It reminded me of how my daughter and I would tromp around the back yard on Nordic skis, on an inch of snow, whooping and hollering and greeting the start of ski season. That part of the father-daughter experience ended with adolescence. Then skiing, which had been part of my life since I was five or six, was killed off by The Beast. I remember the last two times I skied, once with my daughter, once solo. Both times I struggled through the pain, obstinately denying it.  That was before the diagnosis, when I didn't really know what I was up against.

I found myself, once again, trying to explain the TN worldview to a well-meaning innocent the other day. She had clipped an ad for Botox for migraine for me. I took it with courteous gratitude and without getting into the differences between actual Botulinum toxin and phenol injections, which I barely understand myself. I just explained that the therapy appeared to be off the table because it is potentially fatal and that makes neurosurgeons nervous. (The jury is still out on the "off the table" bit. We'll see if a second opinion is in the offing.)

Continuing in that flippant vein, I said that neurosurgeons don't understand that fatal doesn't necessarily mean bad to us, mentioning the grim statistics of suicide amongst people with intractable TN. Before I could go on, I got the usual "but but but that's terrible. Why would anyone think that?" So I pulled out the closer: "because the pain is so extraordinary that death is just a treatment option."
That's a great way to get some subjects changed.

So now I get to ponder my options between now and Friday, January 13. There shouldn't be any problem ginning up some pain for the neurosurgeon to study (insert sarcasm note here), because the precursor pain is coming along more, and more often, already. There have already been a couple of troubling warning shots on my right side. I'm trying to persuade myself that it's just psychosomatic: we'll see. If we get to the serious dickering next time there will be three opinions to reconcile, at least.

First, we have the neurosurgeon and his staff, who say that his  MVD procedure is "elegant."  In the language of science, elegance is defined as a minimum of constructs to reach a conclusion or outcome. The procedure itself, the insertion of tiny synthetic sponges to insulate the trigeminal nerve root from the impinging blood vessel, is perhaps elegant. The approach, as I understand it, is anything but. It is a craniotomy, almost the oldest surgical procedure known to humanity. MVD has at least one thing in common with the earliest known craniotomies. They were performed in the Paleolithic era, it is theorised, to let evil spirits out of the heads of the patients. This is a rather apt parallel. Asepsis and precision instruments have improved the success rate, but the neurosurgeon is still drilling a hole whose diameter is somewhere between that of a nickle and a quarter in the skull, driving out the evil...pardon me, performing precision brain surgery, and replacing the skull tissue with a metal lattice-work, then closing. I will perhaps accept "elegant" as an adjective if the approach can be performed with a little more finesse.

Then there's the recovery, Typically, it will start with one night in ICU and two nights on the wards, which at the hospital in question costs about $10,000: I know because it's my business to know, but we'll get to the money-ball later. After that, the patient is home as soon as the patient can ambulate. Oddly enough, as soon as one can ambulate one's arse out of the hospital, there are usually severe restrictions on mobility. You must usually divide your day into little chunks of walking, sitting or lying down, with bits of rehab exercise tossed in here and there. Your head is either totally shaved or partially shaved in some grotesque fashion that would get you the envy of a Goth queen: no hats, no wigs, no nothing. You can't drive, and may even have your licence taken away: for months. You can't work. But in many cases, you won't need to worry about gaining weight, because you may lose your appetite. All this assumes a normal recovery with a normal prognosis.

If MVD is elegant, why does the recovery sound so much like major brain surgery, which it is? Thus the next part of my standard of elegance is learning whether anything mitigates this grim outlook. And no, I don't care if I'll be able to receive radio signals with my head.

All this explains why I'd like to hear another neurosurgeon confirm that phenolic injections are unsafe at any speed. We haven't gone there yet, but that bears looking into. Nor have we heard from the parties who will pay for most or all of this, whose record of support for neuralgia surgery is dismal at best. As I said, medical reimbursement is my occupation, and I won't take one step toward an OR without knowing, in writing, who is paying for what. That's the money-ball game.

It's for damn sure that I can't count on anything I spent my life expecting to rely on in retirement. I keep recalling a form of demonstration from the sixties and seventies called the "Die-in." We're the same people, just older. I think we ought to start planning die-ins in which we actually die. Start small, outside of hospitals. Move to state houses, then Washington. Bring popcorn for the living.

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And now, back to a recurring topic

Whilst I'm taking deep, cleansing breaths on the TN front, I'm returning to an old favourite: ICD-10. I  recently discovered The Misadventures of Ada, in which we discover humour in the medical coding/documentation. The last time I went down this road, I was treated to an imbecilic rant by a troll who seemed to know nothing about the subject, save what he/she had picked up on the Interwebz (so it must be true, right?).

So fundamentals first. I didn't get my ICD-10 knowledge from Google. I've been a certified professional coder for eight years,  worked in health care documentation for three years, and took a certificate in coding before that. So it's just possible I know more than Google about this.

The funny, no, hilarious sections of ICD-10 have little or nothing to do with diagnosis. They come from Sections V through Y, which address external causes of accident and disease, or location of accident or disease. Their purpose is statistical, and they aren't there by chance. Everything you see in these sections has happened at one time or another, and every location is there because it's figured in some accident or disease in the past. These sections have been in all previous editions of the International Classification of Diseases (ICD) from the start. At one time the statistical purpose of ICD was its main function. The enumeration of diagnoses and procedures became the main purpose as its usefulness became apparent.

Why did so many people get their knickers in a twist about this? Because ICD-10 had opponents, chiefly among organisations with special interests, like promoting their own system. Those organisations knew how to manipulate public and legislative opinion. They knew that no layperson  would know that the external causes sections had always been there, and had always had codes that looked silly taken out of context. Thus they flogged that horse, instead of dwelling on, say, the greater precision ICD-10 offers when describing coronary artery disease. That's not funny at all.

Today, these sections are as funny to most coders as they are to the public. First, because many of us can go through our entire career without needing to use them. Second, because the real hilarity shows up when someone miscodes a cause. W56.02, struck by dolphin,  would be far funnier paired with, say, V05.02, "pedestrian on skateboard injured in collision with railway train."

One of my colleagues asked me if I could find external cause codes that accurately described her son's recent injury during a LARP event at a summer camp. It turns out I could. This stuff is obviously of more interest to insurance companies than to clinicians or anyone else, but it does have a purpose.

So browse The Misadventures of Ada. Then, if you want to use Google constructively, chase down the code in question using something like "ICD-10 code W56.02" and see what you find.

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