Slacking

Slacking with some reason. Since the arrival of the Beast in earnest, I've been looking for a trend to latch onto for discussion. A month on and it's become clear that the only trend is that things do not get totally out of control on the current medication regime. I did grit my teeth and up my Gabapentin to the prescribed dosage (800 mg thrice daily, enough to flatten a Budweiser Clydesdale).

Yes, I get occasional Goofies, as well as other less agreeable side effects from time to time. (More on that below.) The proper dose, plus the Baclofen, seems to have shored up the gates against the full-on, out of control breakthroughs that have so often made going to Hell look more like a reward than a threat by comparison. One can't relax the vigil, however. I've taken a couple of long anti-cabin fever walks in our recent mild weather and wound up regretting both of them.

Later on, I may have to educate the new neurosurgeon, as I did one when this started, about the imprudence of tapering the dose. Back then, I was only a few days into his optimistic taper when I had a really unmanageable breakthrough. In full summer, which really sucked. The jury is still out on the question of whether my mystery right-side neurovascular compression is manifesting TN symptoms.  As I commented in the last post, I have no idea if I had precursors. I have to work hard to remember any life without TN.

Today I finally shipped off my paperwork and DNA sample for the Yale study into the genetic origins of trigeminal neuralgia. It appears one has to be selected for the study, as I was. That is owing mainly to having landed in the right hospital, with the right neurosurgeon. My particular neurological freakishness may also have made Dr. E think I was a good candidate. At any rate, there are a few clinical hoops to jump though, followed by a pile of red tape and an agreement to do a DNA "buccal" (cheek) swab. Oh, and this isn't a paid study. It may not even make chances of a cure, or even better treatment, possible in my lifetime. It's paying forward for the next generation. I have a  daughter, who agreed to take part in the study. If the Yale hypotheses are correct, and genetics do play a role in TN, she is at risk. As a woman, she is at greater risk, as TN affects women over men by a ratio of about 5 to 3. I would pay it forward in any case.

I don't have a particular aversion to medical red tape (I handle it for a living), but the questions required one to describe the experience of my episodes as objectively as possible, and how if at all the experience has changed over the years. The Beast was kind enough to drop by to refresh my memory about the current state of things, and I've looked back on my old posts to see what my impressions were several years ago. It's somewhat disagreeable to relive the older experiences. One gets through this by not looking back too much.

I had quite a round of side effects today, which unfortunately started when I was on the road. The most interesting one was a line of thought that morphed into a hallucination of a melting face a la Raiders of the Lost Ark. (Clinical knowledge is very helpful at moments like that, as in "oh, what an interesting hallucination," vs. "God, my face is melting!")

When I had got myself back home and into bed, I had two consolations. One was our cat, who came up on the bed to give me a once-over before lying down and staring at me intently. It reminded me of the joke about the vet, his cat scan and his lab work. I felt I'd had the cat scan and was now under observation.

The other is a little harder to keep in mind. I consider that side effects, unusually intense now because of the change in dosage, are the price I pay for not having breakthroughs two or three times a day for two or three months of the year. The breakthroughs were the initial price for not having unmanageable pain eight months a year. Most of the time, the side effects are a fair trade.

Today's experience bordered on the unfair, which made me glad I had the cat scan to smile about.

Latest round begins

Of course, the Beast had to wait a week after my neuro consult. On a rational level, today might have been worse: Mankoski 6 to 7. What kind of whacked me was that after meds (except Clonazepam) and an hour of bed rest, I was able to get up, and got hit again. That was another hour lost, and a first-class pain hangover now.

There are still hints--more than hints, really--of bilateral manifestation. The trouble is, I've lived with TN so long that I have no recollection of what to look for at the beginning. Would it be precursor pain, full-on episode, or what? I guess we just wait and see.

No surprise, my neurosurgeon has recruited me to join a TN study. It's at Yale, but one doesn't have to go there. I've volunteered and I seem to meet all the criteria but one. The study is looking at the genetic component of the disorder, and where possible, the researchers want to be able to sample your DNA and your parents'. My parents have been dead for over 20 years, and it strikes me that this could be a problem for such research. In most people, TN appears after age 50, so the proportion of people under treatment with living parents may be disappointing. I'm game, anyway, and I'll post more as I learn it.

Indefinite

My town's legislature is an open town meeting. When a question comes before it that the meeting, or actually its leadership, aren't quite ready to address it is "indefinitely postponed." This says that the question is a good one whose time has not yet come.

The question of my TN surgery has been indefinitely postponed.

I'm for this, and I didn't even have to argue for it. The neurosurgeon understood that as long as my TN is contained  within tolerable limits by drugs, no carrier in the US is going to cover surgery.

Contained is the word. My present trifecta of drugs is doing a good job containing the TN. I'm having to use Clonazepam very rarely, which is a good thing. Alone of my medications, Clonazepam can create clinical dependency. I didn't know that I had turned the corner into dependency until I began taking Baclofen and found that I couldn't take both at the same time. The pair of them knocks one out so fast that one barely has time to lie down. Cutting back K had to happen, which led to a fortnight of interrupted sleep and extreme crankiness. Not much of a dependency, for sure ( I hadn't increased the minimal dose), but enough to be a warning. One neurosurgeon I saw called Clonazepam "a witch." I know what he meant now, and I'm back to using it only when the neural pot is about to boil over. Trifecta + K + T=containment (where T is my absurdly increased pain threshold). 

It's all a high wire act in which every step has risks. I've hit the safe maximum on Carbamazepine and Gabapentin. It's a question for my physician whether running up the Baclofen would be any help at all. Clonazepam is addictive. My pain threshold is now so high that I run the risk of sustaining serious injuries without even noticing them.

I had the latest instance of that a couple of weeks ago when my platelet donation failed. Failure of the stick is an occupational hazard for platelet donors, because it involves needles that are nearly the diameter of the vein itself. I knew there is always a risk of a hematoma extensive enough to cause at least discomfort after any blood draw, and I knew what to do about it. 

Several days after this failed draw I noticed that I had a pretty extensive hematoma. It was big enough to cause discomfort at least. I felt nothing. Up to a point, pain can be your friend, but that friend is gone. It's hard to remember to check visually after any injury when every accident seems like an incident.

Let's not forget that people with chronic illnesses will be the first under the bus when the Trump Congress gets busy dismantling Federally subsidised health care. I don't know what my personal pharmacy costs every month. Unlike most people, I have the tools to find out, although even they are mostly linked to Federally mandated rates. When I have a moment, I should look at this.

And no, MassHealth and similar state programmes won't help for long. Once the Affordable Care Act is gone, and the Tinker Toy Trumpian "substitutes" are in place, there will be a seismic shift in coverage for care. Programmes like MassHealth are likely to be snowed under as carriers, especially from neighbouring states, dump their chronically ill  into them. (That happened before ACA to a small degree. I worked at MassHealth for a time, and screening the dumping attempts was part of my job.) There will be more on that later. 

Congress is doing magic that they don't understand. Once they have done it, neurosurgery in this country will be priced off the table, and it's unclear whether my meds will be similarly priced out.

It's a bleak future. For those who try to live with a chronic disorder, it may be bleakest of all.

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.

Goofies

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.

Warnings

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.

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.

Being really unique

Uniqueness isn't necessarily a good thing. Consider this tableau from an MGH exam room yesterday. On the right is my neurosurgeon. Centre is Yours Truly. On the left is a surgical resident. We are all looking--staring, really--at an MRI image of my brain. All of us are trying very hard to maintain clinical decorum, and not to say "what the FUCK?"

For those who haven't taken anatomy and physiology, I must explain that trigeminal nerves come in pairs, one set on the left and one on the right. This is why most people who get to entertain this disorder have it on one side or the other. Only a very unfortunate few have bilateral TN. Just as the experience of unilateral TN is beyond the imagination of most people, bilateral TN is beyond our ability to imagine.

Last Saturday's MRI was meant to determine whether my left side TN was indeed idiopathic, or whether it was the result of vascular compression of the primary trigeminal nerve. With the improvement of imaging and other diagnostic tools, the latter has been found to be the source of TN in the majority of cases. The neurologist was therefore confident that he would discover vascular compression of my left trigeminal nerve.

The MRI showed, instead, compression of my right trigeminal nerve. Exactly what this means is unclear, hence the WTF moment for surgeon, resident and patient. The patient is hopeful (desperately so) that what we have here is an instance of neurological gymnastics and the source of my left TN pain, however odd that might be, is the right vascular compression. The alternative is that bilateral TN is somewhere in my future, and that does not bear thinking about.

At any rate, the next step in the decision process is put off until January. The neurosurgeon initially wanted to see me in December, but I suggested January, because the odds that the Beast will be back in full cry are better then. So January it is. Umm, on Friday the 13th. Fortunately, I'm not superstitious, much.