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?

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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Wednesday, November 16, 2016

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.


Sunday, November 13, 2016

Next steps

I began this dog and pony show around the time we were driving my kid's car across company to her clinical affiliation in California. Now it's a few years later, she's back here, and still in the brain business. My TN is sort of a hobby with her, and she noticed a posting where she works now about a new minimally invasive surgical treatment for TN. She spoke of it as "Botox." OK, logical, since migraine treatment with Botox now has a good deal of traction. As it turns out, Botox is just neurosurgical slang for phenol (or some other) injections of the trigeminal nerve, and the procedure has mechanical similarities to the Botox treatment for migraine. I understood that it wasn't perfect (what is with the Beast?) but could relieve dependency on a bagful of drugs, and didn't seem to come with the after-effects or lengthy recovery associated with other surgical treatment.

Eventually I ended up with the TN neurosurgeon, and went through my usual protocol with surgeons. They ask what I do. I say "medical coder and surgical auditor," and one foot comes out of the stirrup on their high horse. When this one asked how I had heard of his work, I said my kid's a doctoral fellow working with one of his colleagues, and both surgical feet came off the high horse: play the cards you have when gentling surgeons. If you can, show that you're in "the club." It's unfair, but, when they are patients, clinicians and allied health people are generally treated better and get more precise information than ordinary mortals.

At this facility, they have stopped the phenol injections because, to quote this surgeon, "we can't always tell where it will end up." One place it can end up is the heart, which then will stop for good. I would love to find a neurosurgeon who has TN. Then one wouldn't have to explain that that would also be a welcome treatment. One wouldn't have to explain that ending one's life is just another treatment option, so having it done for you is an improvement.

The Good News

My surgeon (cough) buddy has two favourite treatments. Today, with better imaging technology, it has become clear that vascular compression (an artery squeezing the trigeminal nerve root) is the cause of four TN cases out of five. With this in mind, microvascular decompression (or MVD: surgery to relieve the pressure on the nerve) has become much more sophisticated. If a new and better MRI indicates compression, he's ready to cut.

My first MRIs indicated that my TN is ideopathic: a condition without a clear cause. If I come away from the next MRI as ideopathic, then he is a fan of rhizotomy: a partial destruction of the trigeminal nerve root that effectively blocks the pain signals. I'm possibly a candidate for the first of these,  and definitely a candidate for the second. MVD has a 90 % success rate with a low rate of recurrence. Rhizotomy's numbers come under the next heading.

I'm picking this up after the latest MRI. As I've commented here in years past, no MRI is for the squeamishly claustrophobic, and a brain MRI is a notch or two up the scale. So far, my three MRIs have each had distinctive features. The first was like lying under a steel deck whilst someone was dumping 100 tons of scrap metal on it. The second was a decidedly hallucinogenic experience accompanied by sounds similar to post-modern music.

Props to MGH's North Shore Imaging unit. I've always met and chatted with the techs, but this time I got to meet and chat with the radiologist as well. I mentioned the silly advice I got before the first one, that I should bring along a CD of music that I liked. We all chuckled over that, and the tech said "sure. You can hold it."

This experience was well up the decibel scale, but this time, for sound, we had a blend of the heavy metal and the post-modern. My impression was that it was much more intense than either of the previous two. This may have been a hallucination, but I felt certain of being physically smacked around by the pulses at several points, as if my head was actually jolted from one side to the other.

I'll have to wait until Monday's E&M with the Neurosurgeon for the results. My medically naive wife thought I should get an autographed copy of the films. nah-uh. In the latest iteration of HIPAA, you have practically to qualify for a security clearance to walk around with your films. And, of course, they're not films at all, but digital images which go to the common Mass General database in real time.

The Bad News

One of the reasons that rhizotomy fell out of favour as a TN treatment is that patients, while they did get relief from the pleasures of the disorder, also lost most or all feeling in the treated side of the face. They also ran the risk of ending up looking like Tex Avery's Droopy.
MGM Cartoons
Understandably, many patients objected to this. In the modern history of treating TN, this problem has dogged patients and clinicians alike. Nothing can really be worse than the disease, but many treatments have left patients wondering what they let themselves in for.

Supposedly, we now have newer and friendlier facial rhizotomies, which don't leave one with sagging jowls. However, rhizotomies still are likely to leave numbness in their wake. Worse, one goes to the trouble and expense, only to have the Beast back in a few years, leaving the surgeon to do it all over again: the success rate is around 40 percent and there aren't warranties. All these things are the focus of my rhizotomy questions tomorrow.

MVDs are cranitomies: significant brain surgeries that carry numerous risks with them, no matter how well done. Even if everything goes flawlessly, I face a staggering recovery period:  no work, no driving, restrictions on practically everything (Did I mention no drinking?), stretching on for months. As I approach 70, I'm aware of how few months I have left to throw away.

I don't like it. One of the main ways, besides medication, that I currently attempt to contain The Beast is restrictions on what doctors euphemistically call "quality of life." I've had to give up winter sports, especially skiing. I can't eat anything more solid than stew. I can drink little to nothing. Hell, when my sickness is on, my trips outside consist of dashes from house to car to whatever building I must visit. MVD seems to trade one set of quality of life restrictions for another: a treatment that creates a dilemma is perhaps no treatment at all.

Tomorrow I see the neurosurgeon, and my PCP as soon after that as I can manage. Stay tuned.

Tomorrow has come and almost gone. I'm off the hook until January. More directly. That was a bundle of news for all concerned.

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Monday, October 31, 2016

A disorderly focus

Thanks to the Harrumpher guy, who has provided the missing focus for this thing, the adventures of life with trigeminal neuralgia  (TN). It's been a periodic motif here for several years and, aside from the material that an uncommon chronic disorder provides, it may serve as a useful springboard into other topics. So then.

The adventures left off with the joys of Gabapentin, one of the staples of medicated life with TN. I've added a third staple: Baclofen. Best-known as a muscle relaxant, it also has anti-seizure properties,  the same properties that make Carbamazepine and Gabapentin useful for TN. I've been on it for just under eight weeks, and adding it seems to have done one very important thing. My breakthroughs are now contained in hours, at most a couple of days. In the ten years or so that I've been doing Carbamazepine plus Gabapentin, breakthroughs have been the horror that is always lurking around the corner. My primary trigger, to repeat, is temperature changes: that can mean cool or cold breezes, going from a warm space into a cold one, or vice versa. My secondary one, developed over the last four or five years, is dental work on my affected (left) side. At this point, with heavy meds and a ridiculously increased pain tolerance, the brief episodes these stimuli bring on are bupkis. The problem is that any of them, with very little warning, can break through the curtain of medication and bring on a global-scale episode, pain that not only repeats, but escalates. Thus the Clonazepam, which can come out  as soon as an episode shows signs of getting out of hand. Even Clonazepam can only contain each episode, because once breakthroughs are established, they go on. In my case, they go on for six to eight weeks, two or three episodes a day lasting one to three hours each, of pain ranging from barely tolerable to extraordinary. Since one rarely has episodes in sleep, you can do the math. During a breakthrough I may waste half my waking hours hosting the Beast's rambles, and the same amount of time after the episode recovering from having my brain kicked about like a soccer ball.

With Baclofen, so far, episodes sputter out in a short time with little or no resort to Clonazepam. So far. When one lives with this Beast, one grows highly sceptical of any treatment. Many of them work for some people. Some work for all people. For a while: until the Beast finds a way around the treatment and comes back. It's a good thing that Baclofen works, but so far it makes me so drowsy that I only dare take it before bedtime. That may have to change if there's a breakthrough, because "before bedtime" is when I least need help. And oh yes: it's very tough for me to take Baclofen and Clonazepam together. Clonazepam alone can make me disoriented and reckless, as well as drowsy.
I find that both together put me down altogether for six to seven hours.

Is the game worth the candle? We'll see. Next, we take another tour of the great surgical solution question.

Monday, May 30, 2016

Memorial Day randomness

I avoided Memorial Day and Veterans' Day observances until a few years ago, partly to keep what I call "the monsters" in the closet. I still take a pass on Veterans' Day, thanks to the TN. Unless the weather is exceptionally nice for November, outdoor activities like that are high-risk.

This year, rain forced the activities indoors to the town hall auditorium. It's long on atmosphere (completed 1876) and short on acoustics and sight-lines, so I only heard the speakers who knew how to project.

First, a question for more recent veterans. When I was in the Navy, one was uncovered under a deck or in a building, except in formation for especially fancy occasions. One never saluted under a deck or in a building, and one did not salute in formation: the petty officer in charge did that. I don't know if it's new regs, or just that we were pretending we were outdoors, but all the serving personnel and nearly all the veterans were covered, and everyone was throwing salutes all the damned time. Grump.

An aside is that Memorial Day observances are a great place to see how many variations there are to the hand salute. I don't think any two services do it exactly the same way.

Good news was that because of being indoors, we dispensed with the musket salute. Also they sent the high school band home and kept the professional band, whose bugler did not improvise when she played taps. All of this kept the saluting time suitably brief.

They did a pretend wreath laying ceremony, since we couldn't go to the cemetery. People in newer towns miss little details like having a wreath for what we ought to call the Seven Years' War. It would be possible to go further back than that. I believe the first organised naval-military campaign that included locals was the English attack on Quebec in 1711. It was a fucking disaster for the English and so produced a lovely crop of casualties.

Since I began going, I've observed that the monsters aren't entirely missing from occasions like this. But on Memorial Day, they are likely to visit anyway. It's better to be in the company of people who don't need this sort of thing explained. There were a lot of veterans in the hall, and I think all of us had that replay reel running in our heads.

Just before the ceremony began, a good friend came over. We exchanged greetings, and he sat near me. I'm never really aware of how my face can tell tales, just like anyone else's. This particular friend is also fairly insightful. Presumably, he could see that my reel was running, and that my thoughts were pretty far away. He waited until the ceremony was over before saying anything more, and for that I thank him.

I didn't keep score to figure the percentage of veterans of my time who were named in the roll call of local veterans who had died this past year. The figure has been over 25 percent for a couple of years, and this year the total was distressingly large. One of the speakers I could hear commented that most Americans today have no direct contact with veterans or the experience of war. Americans do seem to assume that the military will always be there, he said. What happens when all of us are gone? Will it mean a stronger commitment to peace, or will it mean the nation adopts a more cavalier attitude toward going to war? There's a troubling takeaway from this observance.

Peace to all my absent friends: those who did not make it, and those who came back broken beyond repair.

Monday, April 25, 2016


Coming out of this closet may be as perilous as coming out of one that has to do with sexual preference.

I am a social sports fan, with every team sport except baseball and swimming. That is, I follow other sports simply to deflect needless peer pressure to show an interest in socially acceptable team sports. Today, we hear that Tom Brady's perennial four-game suspension for, um, something, has been reinstated by a three-judge panel of the Second US Court of Appeals.

As a social sports fan, then, here is my message to the teams, the courts, the NFL, and all actual fans of pro football everywhere:

For different reasons, this seems to be the court's message too. Even before this decision, the Second US Court of Appeals had a reputation as the most pro-business, anti-union court in the country. It appears that this panel of that court has upheld that reputation. The court doesn't care a rat's ass whether Brady actually committed an offence: they said as much in the decision. They only care about upholding Roger Goodell's rights under the collective bargaining agreement. The numerous fans and players of other teams who are no doubt cheering the decision ought to read it twice. The substance is that the NFL commissioner can punish any player, on any team, for any reason, or possibly for no reason, just because the player's union lawyers were bargaining pushovers. Roger Goodell now is confirmed in rights that no English monarch, for example, has enjoyed in some 400 years, rights that Donald Trump would have wet dreams about. These rights are not given to just any boss, but to an individual running an organisation with more money and more power than many countries.

The cheering yahoos and players need to realise that this was never about Brady, or his guilt or innocence. If the appeals process goes on until Brady is 50 or so, to the point at which the penalty is moot, it will never be about Brady's guilt. Goodell simply picked the biggest target to show what a tough guy he is.

One of the reasons I can't gin up a lot of profound interest in pro football is, by coincidence, coming up just as this insanely pro-business decision is announced. We appear to have another domestic violence indictment against an NFL player. Johnny Manziel, who should have finished college, isn't as much of a target as Brady. What I will watch with interest isn't the games this fall, but whether Manziel will get the customary two-game suspension for violence against women. I suspect we'll have to see whether Rockin' Roger wins his tilt against his favourite windmill.

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Friday, April 22, 2016

Oh, and there's this on the name business

...About the name business. There have been recent studies demonstrating the extent to which "black-sounding" names have become a liability in the job market. From experience, I suggest that any strange-sounding name, any name that demands that HR ask how to pronounce it, and above all, any name that HR's resume screening software can't handle, is a liability in the job market.

Take that, cutsey baby name vendors and buyers!

How do I know about this? Ever had a job coach suggest that you change your name to be competitive in the job market? I have.

I don't think the average Anglo has had that experience. But the higher up the search ladder an African-American reaches, or an Hispanic reaches, the more likely it is that they hear this expert advice.

So too, I think, it is with those descended from the "small peoples" around the fringes of Europe (and Asia). Of these, the Irish are the best-known. There are many others: some with their own nations, but all with their own languages. Americans know, or think they know, the Irish and Highland Scots. They barely know the Welsh. There are also Bretons, Basques, Suomi, Sami, and so on. And any of these who have names that don't fit the Anglo-Saxon template? Well, along with people of colour, they'll just have to change their names to get a job equal to their abilities.

Some--most--of my Welsh relations took names in Saesnaeg. In a fit of nationality, they gave me one that wasn't. And with all its disadvantages, I'm not changing it.

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Missing time

The few who have hung around here long enough know that, courtesy of the U.S. Navy, I am short about two months of my life, from March until mid-May, 1970. This is the period in which I was conned into accepting unnecessary surgery. During that time, my chief preoccupations were getting well, and helping people far worse off than I to get well. For most of that time, my exposure to media was limited to the cacophony of  50 radios in a 40-bed ward, all tuned to one form or another of pop music.  I was barely conscious during the Apollo 13 crisis. When I saw the film, it was entirely new territory to me. Next, I had only the vaguest idea that the first Earth Day was happening. My thought at the time was something like "cool," but ever since an idea that otherwise should have, and does, resonate with me, is something with which I haven't totally connected. Perhaps if I had been present at the creation, I wouldn't have to be reminded of it each year with a dope slap. I had the annual dope slap today, which is why this is on my mind.

I was somewhat more aware of things by May 4 of that year. If you don't know what May 4, 1970 means, you're the one who needs the dope slap. Even that was barely on the radar of someone on a big ward full of broken sailors and Marines. None of those 50 radios was tuned to news, and in any case in those long-gone days there was no such thing as a 24-hour news cycle.

So, if that era is only something you studied in high school history, do keep in mind that a few of us have gaps in our recollection that owe nothing to early dementia. We had other things on our minds.

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