tag:blogger.com,1999:blog-78354532024-03-13T20:10:02.156+00:00ScratchesComments on life, the universe and everything from an aging Sixties survivor.Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.comBlogger892125tag:blogger.com,1999:blog-7835453.post-15601080572808687482017-02-28T02:12:00.000+00:002017-02-28T02:12:52.298+00:00SlackingSlacking 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).<br />
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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.<br />
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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.<br />
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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 <a href="http://wncldrwg.blogspot.com/2016/11/being-really-unique.html" target="_blank">neurological freakishness </a>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.<br />
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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.<br />
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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 <a href="http://giphy.com/gifs/indiana-jones-raiders-of-the-lost-ark-nazi-face-melt-L4caiF7GTkgJa" target="_blank">Raiders of the Lost Ark</a>. (Clinical knowledge is very helpful at moments like that, as in "oh, what an interesting hallucination," vs. "God, my face is melting!")<br />
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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 <a href="http://web.mit.edu/levitsky/www/jokes.html" target="_blank">vet, his cat scan and his lab work</a>. I felt I'd had the cat scan and was now under observation.<br />
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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.<br />
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Today's experience bordered on the unfair, which made me glad I had the cat scan to smile about.<br />
<br />Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-51857430358336617552017-01-21T22:07:00.000+00:002017-01-21T22:07:14.280+00:00Latest round beginsOf course, the Beast had to wait a week after my neuro consult. On a rational level, today might have been worse: <a href="https://www.scribd.com/doc/164498351/Chronically-Awesome-Mankoski-Subjective-Pain-Scale-for-Chronic-Pain-Patients" target="_blank">Mankoski</a> 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.<br />
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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.<br />
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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.Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-45824092880813788672017-01-15T15:10:00.000+00:002017-01-15T15:10:40.574+00:00IndefiniteMy 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.<div>
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The question of my TN surgery has been indefinitely postponed.</div>
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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.</div>
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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). </div>
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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.</div>
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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 <a href="http://bit.ly/2iuptz0" target="_blank">hematoma</a> extensive enough to cause at least discomfort after any blood draw, and I knew what to do about it. </div>
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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 <i>nothing</i>. 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.</div>
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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.</div>
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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. </div>
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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.</div>
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It's a bleak future. For those who try to live with a chronic disorder, it may be bleakest of all.</div>
Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-76493792973148533082016-12-24T03:06:00.000+00:002016-12-24T03:06:46.936+00:00Year something or otherWell, 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."<br />
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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.<br />
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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 <a href="http://cranquis.tumblr.com/post/131276059934/how-to-talk-to-practitioners-about-your-physical" target="_blank">Mankoski Pain Scale</a>, 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.<br />
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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.<br />
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So here we go again.<br />
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<br />Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-15303117917804087772016-12-19T00:48:00.000+00:002016-12-19T00:48:57.154+00:00Goofies<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-EzbPMpUhtxs/WFceViyXiMI/AAAAAAAAAfg/sKvOkk3_NdoYbv9BIIVUMl3FTjMcysCbwCLcB/s1600/goofy-07.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://3.bp.blogspot.com/-EzbPMpUhtxs/WFceViyXiMI/AAAAAAAAAfg/sKvOkk3_NdoYbv9BIIVUMl3FTjMcysCbwCLcB/s320/goofy-07.gif" width="281" /></a></div>
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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. <br />
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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.<br />
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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.<br />
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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.<br />
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Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-63177375311278108092016-12-04T02:06:00.000+00:002016-12-04T02:06:16.709+00:00WarningsIt 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."<br />
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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.<br />
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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.<br />
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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.)<br />
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Continuing in that flippant vein, I said that neurosurgeons don't understand that <i>fatal</i> doesn't necessarily mean <i>bad</i> 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."<br />
That's a great way to get some subjects changed.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
<br />Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-11533080499581974342016-12-04T00:20:00.000+00:002016-12-04T00:20:33.136+00:00And now, back to a recurring topicWhilst I'm taking deep, cleansing breaths on the TN front, I'm returning to an old favourite: ICD-10. I recently discovered <a href="http://www.healthicity.com/blog/topic/the-misadventures-of-ada" target="_blank">The Misadventures of Ada</a>, 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?).<br />
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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.<br />
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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.<br />
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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.<br />
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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 <i>real</i> 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."<br />
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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.<br />
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So browse <a href="http://www.healthicity.com/blog/topic/the-misadventures-of-ada" target="_blank">The Misadventures of Ada</a>. 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.Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-6033666346585736002016-11-16T01:42:00.000+00:002016-11-16T01:42:56.263+00:00Being really uniqueUniqueness 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?"<br />
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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.<br />
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Last Saturday's MRI was meant to determine whether my left side TN was indeed <a href="http://medical-dictionary.thefreedictionary.com/idiopathic" target="_blank">idiopathic</a>, or whether it was the result of <a href="https://radiopaedia.org/cases/trigeminal-neuralgia-vascular-compression" target="_blank">vascular compression</a> 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.<br />
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The MRI showed, instead, compression of my <i>right</i> 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.<br />
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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.Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com1tag:blogger.com,1999:blog-7835453.post-9071088512779991372016-11-13T22:31:00.001+00:002016-11-16T01:43:41.017+00:00Next steps<br />
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.<br />
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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.<br />
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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.<br />
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<b>The Good News</b><br />
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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.<br />
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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.<br />
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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.<br />
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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."<br />
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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.<br />
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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.<br />
<br />
<b>The Bad News</b><br />
<b><br /></b>
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.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-nHLK3gciy8Q/WCjh_A-Ca8I/AAAAAAAAAfQ/xCljkKt45a4rgvX8-YcpfdIZ4XZH5nKQgCLcB/s1600/Droopy_dog%2B%25281%2529.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://3.bp.blogspot.com/-nHLK3gciy8Q/WCjh_A-Ca8I/AAAAAAAAAfQ/xCljkKt45a4rgvX8-YcpfdIZ4XZH5nKQgCLcB/s320/Droopy_dog%2B%25281%2529.png" width="158" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">MGM Cartoons</td></tr>
</tbody></table>
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Tomorrow I see the neurosurgeon, and my PCP as soon after that as I can manage. Stay tuned.<br />
<br />
Tomorrow has come and almost gone. I'm off the hook until January. More directly. That was a bundle of news for all concerned.<br />
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<br />Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-14919157623252891622016-10-31T20:29:00.002+00:002016-10-31T20:29:23.991+00:00A disorderly focusThanks 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.<br />
<br />
The adventures left off with the joys of Gabapentin, one of the staples of medicated life with TN. I've added a third staple: <a href="https://www.drugs.com/baclofen.html" target="_blank">Baclofen</a>. 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 <i>bupkis</i>. 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.<br />
<br />
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.<br />
I find that both together put me down altogether for six to seven hours.<br />
<br />
Is the game worth the candle? We'll see. Next, we take another tour of the great surgical solution question.Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-14824093695314784912016-05-30T19:05:00.001+00:002016-05-30T19:05:34.792+00:00Memorial Day randomnessI 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Peace to all my absent friends: those who did not make it, and those who came back broken beyond repair.Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-42452794308433291562016-04-25T19:57:00.000+00:002016-04-25T19:57:48.455+00:00ConfessionComing out of this closet may be as perilous as coming out of one that has to do with sexual preference.<br />
<br />
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 <a href="http://www.nytimes.com/2016/04/26/sports/tom-brady-deflategate-new-england-patriots-suspension-reinstated.html?src=me&_r=0" target="_blank">Tom Brady's perennial four-game suspension</a> for, um, something, has been reinstated by a three-judge panel of the Second US Court of Appeals.<br />
<br />
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:<br />
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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.<br />
<br />
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.<br />
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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 <a href="http://www.chron.com/sports/manziel/article/Lawyer-Johnny-Manziel-will-be-indicted-by-grand-7306936.php" target="_blank">another domestic violence indictment against an NFL player</a>. 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.<br />
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<br />Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com1tag:blogger.com,1999:blog-7835453.post-41854110773990228782016-04-22T23:37:00.000+00:002016-04-22T23:37:30.914+00:00Oh, 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 <i>any </i>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.<br />
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Take that, cutsey baby name vendors and buyers!<br />
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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.<br />
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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.<br />
<br />
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.<br />
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Some--most--of my Welsh relations took names in <i>Saesnaeg</i>. In a fit of nationality, they gave me one that wasn't. And with all its disadvantages, I'm not changing it.<br />
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<br />Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-37174846912102714382016-04-22T23:27:00.000+00:002016-04-22T23:27:23.928+00:00Missing timeThe 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.<div>
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<div>
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.</div>
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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.</div>
Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-11370611744888234012016-04-04T20:14:00.000+00:002016-04-04T20:14:53.321+00:00Old rant, new arrangementThose who care to shuffle around in older posts here will find variations on these themes.<br />
<br />
<ol>
<li>Americans who can pronounce my name correctly amount to a fraction of a percentage. It is a simple, one-syllable Welsh name, easy to pronounce if you stayed awake in third-grade grammar class long enough for the uses of "y" as a vowel. But most red-blooded "real 'Muricans" can't spell or pronounce English, proving that they were very sleepy in grade school, or their teachers were lazy, or they are lazy, or a combination thereof. I've observed that recent immigrants are much more attentive to things like this. If they come across a name they can't pronounce, they'll usually ask, politely, how to pronounce it, and listen to the answer. 'Muricans, even those who ask, are too arrogant or lazy to listen.<br /></li>
<li>Despite this, gen-X Americans in particular, and regrettably some millennials, are moderately obsessed with digging up cute and "original" names for their spawn. African-Americans, who devise entirely new names, are the ones who are really original in this line. The white begetters and consumers of cute baby names either take a European gender-appropriate name from a language they don't understand, or take a name that sounds "interesting," regardless of its gender in the original language, and apply it to their offspring whether it fits or not. Thus, if you rummage around Google for "Bryn," in the U.S.A, you'll find a significant number are female, bearing a name which in the U.K. is as gender-specific as Fred or George.<br /></li>
<li>The purveyors of cute baby names assert that it is much better to blend genders like this. However, the blending usually works out better for the girls than the boys. First, there is a social bias favouring the use of traditionally male names for female children. Second, it has been noted (when I get around to finding the citation I'll link to it) that when a male (or place) name is used often enough for female offspring, it loses its male or neutral identity and becomes female. This rather works against the purveyors' hypothesis.<br /></li>
<li>My latest observation is that while American parents are earnestly blending the genders of their little sprats' names, or favouring the practise, few among them are prepared to have their children, or someone else's, actually blend their genders. Note that I'm not talking about gay children, who still have troubles of their own with many parents. While my interest here does encompass transfolk, the area that is still beyond the pale for most of the parents happily playing gender games with childrens' identities is that broadly called non-binary. I rather doubt that there is a clear indication that gender-neutral names produce non-binary adults. I know of too many non-binary and trans individuals who began their lives with some sort of gender-specific name to see a correlation. All the same it would make an interesting study. What I do suggest is that parents who are willing to accept gender-blended names, but unwilling to accept children whose actual identity doesn't match expectations, are thirteen different kinds of hypocrite. This is true, I think, whether the child in question is theirs or someone else's, and whether the individual is still a child or has become an adult. It is especially true when the person rendering judgement is a legislator or other authority figure. While we're proposing studies, how about one checking up on the sort of names reactionary lawmakers are giving their kids?</li>
</ol>
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Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-2836060365870846512016-03-29T00:25:00.000+00:002016-03-29T00:25:25.532+00:00Dinner and a showIn honour of my wife's birthday yesterday, and the end of the four days a year when she can say she's younger than me, we went out to a pretty good Indian place in Salem. Toward the end of the evening, I suddenly became aware of her saying "are you all right?" I pulled my wits about me and said "Of course I am," although I was somewhat lost in admiring the very hot chutney. She replied that my eyes were rolling, that my face was pale and had tremors, and I looked like I was about to fall out of my chair. All this on the tandoori, the hot chutney, and a half glass of wine. As usual, the colour was the first to come back as the server came over to help, whereupon every eye in the room was upon me. Embarrassment is as much a part of this business as pain. My wife insisted on driving home and I didn't resist. When I got there the combination of signs and symptoms interested me enough to check them against the meds.<br />
<br />
Sure enough: right out of the Gabapentin playbook.<br />
<br />
I'm supposed to be dividing my monster doses into three equal ones with meals, which isn't how I'd been taking the lower dose for years. Force of habit has had me taking the last dose at bedtime. Just this weekend, I determined to get the timing of that third dose under control, so for three nights I had taken it before supper.<br />
<br />
Hindsight suggests that wasn't a good idea, and that I'd do well to return to the old schedule.<br />
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It ain't over til it's over.Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com2tag:blogger.com,1999:blog-7835453.post-81371984552233209672016-03-19T17:13:00.000+00:002016-03-19T17:15:22.465+00:00The value of historical contextI read a good deal of popular history. Some of it rises to a scholarly standard, while some gets bogged down. The swamps that entrap popular historians include an obsession with descriptive detail, forgetting that most readers of popular history already know this stuff. It breaks up the narrative and belongs in footnotes, not the text. Some sink into the pit of antiquarianism. Authors may spend so much time discussing the doings of a small area of geography or population that, again, they lose sight of the broader picture. Finally, they may wander into wetlands where flourish historical legends which have gained truth only by repetition.<br />
<br />
One of the more annoying is that involving the historian Samuel Eliot Morison. It is true that as a junior faculty member at Harvard (beginning in 1915) he travelled between the campus and his home on Beacon Hill on horseback. He wrote about it himself. The legendary part of this is the "oh ha ha" business that goes with the repetition, and the tendency to picture Morison riding alone through streets filled with cars, trucks, and trolleys.<br />
<br />
In context, this isn't as foolish as it sounds. Those laughing seem to overlook that the horse played a role in urban and rural transportation well into the 20th century. There was no sudden takeover by automobiles, but rather a long transition from one mode of transportation to another. In 1915 mass-produced cars and trucks were new and had not shed their aura of novelty. Ten years later, it was clear that automobiles were here to stay, and that the horse was fading as a mode of urban transportation. Twenty years later, horses had all but disappeared from city streets, and it appears that Morison's days of riding to Harvard were long in the past.<br />
<br />
The horse hung around somewhat longer in smaller cities. For example, my wife's family ran a livery stable in Holyoke, MA into the 1930s. Her mother rode, and while she didn't encourage her children to learn (too many injuries) they all grew up as natural horsewomen: in the genes, apparently.<br />
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In my neighbourhood in Concord, NH, there were still horses at work when I was very small. The city used horse drawn sidewalk plows until 1952 or 1953, and I remember being sad when the horses were replaced by machines. A few people near us still used iceboxes, and the ice came to them on a wagon. That rig disappeared when the iceboxes did.<br />
<br />
The last holdout was a local farmer who sold <a href="http://www.merriam-webster.com/dictionary/hulled%20corn" target="_blank">hulled corn</a>. It may surprise southerners, who know the product as samp or hominy, that there was a market for this so deep in Yankeeland. My mother wanted no part of it, being suspicious of the process used to make it. That involves boiling the corn in lye water. He was still selling from his wagon after we moved to East Concord in 1955, and I'm not sure when and why he stopped.<br />
<br />
At any rate, Morison's ride from Beacon Hill to Harvard was neither hilarious nor eccentric in context. The transition from horses to internal combustion engines is a rather interesting period, one that some transportation historian ought to examine in more depth.Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com1tag:blogger.com,1999:blog-7835453.post-90250876925116313242016-03-18T23:50:00.000+00:002016-03-18T23:50:46.332+00:00Disturbing DesperationI'm nearing the end of Peter Kick's <i>Desperate Steps,</i> a collection of real-life tales of incident and accident in the Northeastern U.S. backcountry. Many--too many, one might say--do not end well. My own life experiences make these accounts troubling. Many are not on mountains at all. Of those that are, a good number take place on fairly moderate mountains, the sort of places where I might easily make the same mistakes.<br />
<br />
The book has me reflecting on experiences of my own, and of my spouse's, which came very close to being fodder for a book like this.<br />
<br />
My brother and I spent much of our childhoods on a small island in Lake Winnisquam, NH. When we got old enough for school, we necessarily spent less time there. It was about that time that my dad bought a second boat, so that when he commuted to work we would not be marooned. It was (is: my brother still has it) a 12 foot all-aluminum boat, then a novelty. It had a three horsepower outboard, which didn't deliver a lot of speed,<br />
<br />
One weekend my dad chose this boat for a visit to the former owners of the island on the western shore of the lake. Keith, the husband of the couple, was blind (his reason for selling the island) and both my brother and I thus became acquainted early with that particular view on life. While we were there, the cloud cover thickened, and it was Keith who first noticed thunder in the distance, and suggested that we had better get going.<br />
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Even with the early warning, we weren't quite in time. A thunderstorm was coming up the lake and was upon us before we were well underway. Keep in mind first that the boat was entirely aluminum, even the seats. second, it was very slow with a load of an adult and two children. My brother and I wrapped ourselves in tarps and crouched in the bilges while my father steered through the longest mile any of us had ever had on the water. We did make it without incident, which owed a lot to luck.<br />
<br />
My spouse and her sister, in high school, crewed for their dad on a Lightning-class sloop (hold the irony for a moment). One weekend, they went to a regatta on Lake Champlain. The weather began to turn dirty and their dad, being a prudent sailor, headed for the dock from some distance out. Now one can't hurry a sailboat. When thunderstorm fronts approach over the water, several things happen. First, as they say, it blows like stink, and one is preoccupied with keeping the boat upright. Next, just behind the front the wind is likely to drop. This is awkward, because there is still lightning and one wants to get ashore fast.<br />
<br />
My wife can't remember the exact moment that lightning struck, or even whether it actually hit the boat. There was a brilliant flash, The good thing about a sailboat is that one is sitting under a grounded nest of rigging, which MAY minimise damage. It did this time. She and her twin were stunned and numb. She remembers that her dad's hair was literally standing on end, and that the boat was afloat in a sea of stunned or dead fish. That is about as close a call with lightning as anyone would care to have. In the years we sailed, we either left races early if a thunderstorm threat became serious, or never left the dock.<br />
<br />
In our early years sailing, we and the fleet sailed well into the fall, under conditions we would never chance now. As one dockmaster said, "the boats are 40 years older, and the sailors are 40 years older."<br />
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At any rate, we were racing in 20-something knot wind, with seas we could look up at from the cockpit of our small boat. My wife was skipper, and after a while decided she had had enough. Before heading home, she asked me to take in the jib. I'd nearly finished the job when I slithered, rather than fell, overboard. Both of us were experienced enough on the water to be wearing life jackets. I never lost contact with the boat, but began to wonder how I was going to get back on board, seeing that I'm twice the size of my wife. The water temp was somewhere under 50 degrees F, which made getting aboard very attractive.<br />
<br />
In the seconds I was thinking these thoughts, I was going hand over hand aft, to the lowest point of the boat's freeboard, knowing that was my best shot. As I tried to lift my very wet self into the boat, my wife left the tiller, grabbed the back of my life jacket, and hoisted me bodily back on board. Never before or since have I been party to such a demonstration of the benefits of adrenaline. The subject still comes up now and then, and she is still astounded that she was able to do that.<br />
<br />
These incidents are very like those in <i>Desperate Steps</i>. They include a balance of bad luck and bad judgment, and any one of the three could have been fatal without an injection of a dose of good luck.<br />
I never forget any of them.Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-85187879883731653132016-03-14T00:39:00.001+00:002016-03-14T00:39:54.763+00:00Root thingsI was speaking to a friend the other day about my new connection with a cousin in Wales. Distance, divorces, and the death of the elder generation had separated families who were, in my childhood, in regular contact. I was musing on the curiosity that my cousin Di got on this generation's track by finding my half-sister on Ancestry.com, then closing the loop on Facebook. Michael commented about how little connection he felt to his revealed ancestry. His family has been on this continent for a sizable stretch of time, long enough to consider the working part of his past to be American: as an American, he has that leaning toward living in the present.<br />
<br />
I understand this, but as an observer. Those connections with the old country, strained as they have been for twenty-odd years, seem to strengthen. My daughter was only casually interested in the family history as a teenager, but is now far more connected. Di attached a number of photos that put faces to names, and young faces to her grandparents. I've added to it thanks to <a href="https://www.google.com/maps" target="_blank">Google Maps</a>. The street below was where my father and his sister lived until a few months before they emigrated. I don't have that information from a source so detached as Ancestry.com: I have it from my aunt, who contributed liberally to a graduate school paper I did on immigration history.<br />
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When I have the chance to dig that paper out, I will be able to add a street number to a street name, and see the house in which my dad was born. From my aunt's description, this view has changed very little in 90 years. The big difference is cars. Private automobiles were incredibly rare in Pembrokeshire in the 1920s. According to my father, his maternal Grandfather Venables drove a horse and buggy, which was a very posh possession for his class and time. Pennar, the district where this road lies, was in those days a home for working class and lower middle class folk. Other street views suggest there has been some gentrification in the years since.<br />
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I digress. The point I was getting to is that "ancestry" is a very different matter when it's fed by living connections, especially connections to a country where the events of 700 years ago are as real as those of the last news cycle are to Americans, connections I recall from childhood that were not so much lost as interrupted.<br />
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The Irish side of my family is much more of a mystery. Where my already-examined Y chromosomes lead straight back some 8,000 to 10,000 years, if I got my mitochondrial DNA looked at, I would expect a much more diverse input. As it stands, certain knowledge only goes back to the early 20th century, and hypotheses only get to the 1870s. That will be very different to the information provided by a relation who lives hardly 20 miles from Pembroke Dock, and can send pictures.Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-4738948587782978332016-03-07T00:58:00.001+00:002016-03-07T00:58:43.364+00:00This thing does have one benefitThat benefit is living with a degree of distraction that makes the political comedy hard to distinguish from the occasional hallucination. No, I haven't gotten into the business of Botox. The past few days have been taken up with surviving a trip to the dentist (always a hazard) and making sure we're ready for the insulation guys next week.<br />
<br />
Things are getting better. Alcoholic beverages are still a problem with the ridiculous doses of anticonvulsants, but I'm adapting otherwise. Eating is better (i.e., possible), archery is mostly possible, driving is no worse than usual. Still, it's true what my nurse boss says, explaining me. "Okay," just means the pain is manageable. Even with all these drugs, it's always there now. It's sort of like walking a wolf: the question becomes who is in charge.<br />
<br />
News enough for now.<br />
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<br />Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-64781316787837724342016-02-20T19:50:00.000+00:002016-02-20T19:50:54.555+00:00Wassup?It says a lot about both pain tolerance and the effects of anti-convulsants that the modest zaps of the past eight days don't really count to me at all. Some have reached the level of distraction, but it's up in the air whether these zaps, or the effects of what are now monster doses of both carbamazapine and gabapentin, are more distracting. Things have thus improved. This is quite a nice day and I've been able to go outside a bit. Still need to be cautious about vigourous chewing and drinking more than a token bit of alcohol.<br />
<br />
I haven't yet asked my PCP about the Botox. Due diligence suggests it's a plan. I'm expecting some argument because my summer experience remains modest. But my counter-argument will be based on quality of life, and the many things Botox would let me do in winter that are off the board now.<br />
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Stay tuned.Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-70003163925363806942016-02-12T20:36:00.000+00:002016-02-12T20:36:34.407+00:00Or not...The following has been written over the last five days, here and there. I'm keeping it for myself, with very little editing, as a document of several days with extreme TN episodes plus medical side effects. It is time to take seriously the medical suggestions that I might be a candidate for the relatively new use of Botox as a TN treatment. This business of increasing medications to near-toxic levels has been unsettling. I'm taking a short breather from the run-up, which I can afford because it's at a level which appears to offer some relief. I have a few days in which I can do this and find out about the Botox. Then I may have to see what the final level brings.<br />
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I was rash enough to call Sunday' episode a culmination. It wasn't. Monday through Tuesday beat it all hollow. In 36 hours I ate successfully once, through a combination of TN and the struggle to run up the meds. When my PCP suggested that step, I hesitantly agreed. I forgot that when I had done the run-up before, it was one drug at at time.<br />
<br />
What's been going on is a combination of every side effect in the litany for each anti-convulsant, along with breakthrough pain at at very high level: high as in I stopped counting. This is the stuff of which suicide is made. Had the whole business not subsided yesterday mid-morning, I'm truly not sure what I would have done. There are limits to endurance.<br />
<br />
Stopping the run-up isn't an option, really. I could call it quits where I am and see if that's enough, but going backwards is only slightly less amusing. As I mentioned, quitting the meds entirely is a potential method of suicide, but nothing else. If what's been going on is a sample of what sudden change of meds can bring, I'd rather throw myself under a bus. In addition, the dosages mean that I can go on at intermediate levels only so long. I have just enough of lower doses to enable the transition (from my old scrips). Since pharmacists today are anal about filling two different dosages of the same scrip, it's push ahead a little more or go back where we started, with nothing to show for all that crap. Gotta go ahead.<br />
<br />
This does creep out the spousal unit. Evidently I've been tossing and moaning enough to call attention to myself. Not good. At the low point Tuesday evening, I just solved the pain problem by gulping a handful of Clonazepam. If you're wondering what happens then, you wake up six hours later with several kinds of headache, persistent nausea and an inability to sleep. And so on.<br />
<br />
Things did get back to normal by Wednesday night, and have remained no more than an average level of pain a couple of times a day. As I mentioned a few days back, that hardly counts anymore.Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-5005108775602236082016-02-08T17:36:00.001+00:002016-02-08T17:36:50.519+00:00Keeping my sort-of promise.Last Monday, my day to have platelets, I had not Tn pain worth mentioning. As usual, that means "no pain that I would consider worthy of notice." Others might not think so. The rest of the week has been less lucky, culminating with a 13-hour marathon that followed a brunch at which I was a little careless, and a social gathering that included a fair amount of walking--also careless.<br />
<br />
One of my diversions in a time like that is thinking about what I might eat when this settles down. Right now, I think it might be peanuts or cashews. The other, as always, is keeping score. The average of the marathon was probably Mankoski 7, with a few 8-plus jabs thrown in for variety. Usually, Once I've drugged up I sleep through a lot of this, and know it's still on when I wake up in pain. This time there was no sleep until early in the evening. Yes, I increased my Clonazepam dose. So would you, in the same place. It brought four or five hours of sleep, and when I woke up, the pain was gone.<br />
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I have to explain that waking up to no pain, in situations like this, brings confusion and surprise before it brings pleasure. When one lives with TN for so long, even with my extended summer remissions, pain gets to be so normal that at first one doesn't quite know what to do when it stops.<br />
<br />Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-48848629323982269832016-02-01T01:36:00.000+00:002016-02-01T01:36:06.611+00:00The price of obstinacyOn Saturday, determined not to let the Beast have all the shots, I drove to Manchester, NH for an SCA event. Since this one is indoors, I figured I had an even chance to seeing something. I lasted about three hours before Beastliness. I finished my last errand quickly, and beat it before the tic got out of hand, I hate the tic almost more than the pain, because one begins to look like a refugee from a horror film. This can alarm misinformed people, which can lead to restraint, and ambulances, and EDs, all of which are unnecessary.<br />
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As usual, once things set in in earnest, eating is a trigger. The exception is breakfast. I don't eat a big breakfast, which may be why. However, I'm otherwise living on soup, and scrabbling to dig up soft recipes that offer a little culinary challenge while having a mush-like consistency. Tonight was curried rice with (bought'n) Punjab eggplant. I've found a recipe for African peanut soup that I can prepare quickly, which is important when one can only count on a few healthy hours a day.<br />
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Here, without naming names, I must point out that any chronic illness brings in its train the well-intentioned but ill-informed friend or relative, who is sure to have something that will keep you healthy and happy and have nothing to do with the problem, The latest was "well, last year you weren't sick, and you went out a lot to shovel snow, so why don't you start taking nice outdoor walks."<br />
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Item: last year I was out a lot because I had to be out, and much of the time I was sick but our seven-foot drifts gave us other worries. I was not as sick as this year because TN plays with you.<br />
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That's the simple answer. The more complex one is that treatment of TN and other neuropathies calls for a delicate balance of meds in the blood and liver that will suppress the symptoms. Sometimes, the liver reserve falls, the blood reserve follows it, and shit happens.<br />
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The game is trying to regain the balance while avoiding as many pain stimuli as possible. This isn't easy with a progressive disorder, especially one that has stolen a march on you. Go for a walk? Sure. Why the hell not, when I can now get sick sitting at my desk in a warm office. Let's go back 200 years, treat like with like, and do the thing most likely to cause pain. How about a nice chewy three course dinner afterwards.<br />
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The best thing to do, if you know someone with TN or another neuropathy, is to be helpfully<br />
sympathetic. Keep your sovereign remedies to yourself. Don't provide links to the latest bit of woo you picked up on Google. Those of us who have dealt with this for a long time (15 years next April, in my case) try to be partners with our clinicians in the treatment of the disorder. We read up peer-reviewed studies of the latest treatments, weigh the pros and cons, and try to enjoy the times when we have little or no pain. Amateur doctors don't help.Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0tag:blogger.com,1999:blog-7835453.post-66535490167808734702016-01-29T21:00:00.001+00:002016-01-29T21:01:05.171+00:00Disagreeable firstsIt hasn't taken long to lose track of the numbers, but on Wednesday I had two firsts with the Beast. For the first time I had an episode at work so severe that I had to leave the office. The other first was the reason for the severity. For the first time Clonazepam had no effect at all on the symptoms. It is understatement to say this was disturbing: it led pretty quickly to panic. Level? Mankoski 9+, McGill over 10: that's to say concentration for more than a minute or so was impossible, I was dizzy and disoriented, and feeling some nausea. Being absurdly self-conscious, I apply what little self -control I have left in these situations to repressing an almost irresistible urge to moan. If I'm alone in bed at times like this, I don't mind so much<br />
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I have a new PCP, who hasn't seen the symptoms, so that was my first stop. One is extra careful driving even on a low dose of Clonazepam, but also I found my sense of time was completely fucked up. It's less than 15 minutes from my office to theirs, but it seemed like three hours. Fortunately, she would be available as soon as possible. Again, I'm not exactly sure how long that was. My face was beginning to tic in the waiting room, I remember that. I don't like frightening the villagers, so I mostly hid my face behind clenched fists during the wait.<br />
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The perky medical assistant who took my vitals had clearly never seen TN in full cry before. I think I took her aback when she routinely asked "how are you?" With what voice I could muster I said " I feel like hell," and went over the symptoms. One trouble with a full-on breakthrough is how hard it is to communicate more than the simplest thoughts. Kept it brief, impressed the MA with the gravity of the situation, and begged her to turn off the light in the examining room (the Google experts don't tell you how much light can hurt). Sitting in the dark did so much to relieve the worst: it has done so since Hippocrates,<br />
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My young physician was all one could ask for. It must say somewhere in my chart that I'm an "informed patient." As my voice came back I described what had been happening for the last two weeks. It's my personal and professional policy never to<i> tell</i> a physician anything; rather to <i>inform</i> them what I have experienced. That's how you get along with M.D.s, and it is a fine line. Mine picked up quickly on the background questions that have been growing in my mind these last two weeks. She proposed some changes in my meds: some small, some pretty substantial that went at first a bit beyond my comfort zone. We talked those through and in the end I agreed, and we agreed how how to ramp up the dosages. One should not go jumping up rapidly in doses of anti-convulsants, nor cut them down rapidly. Either can make one very miserable or even very dead.<br />
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That was two days ago. Yesterday was less rotten than the day before, having applied only the small changes. Today is the start of the larger changes. One is never exactly well when a TN breakthrough is on, but there are degrees of pain, and for us many of those are tolerable.<br />
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In this, and in my work life, I have to deal with the fundamental problem of pain management, which is that pain experiences are subjective. It does little good, for instance, to explain to people that the only pain equal to or greater than the upper levels of TN is inoperable brain cancer. Most people will be lucky enough to be unable to make the comparison. But I read a better analogy the other day, for the moderate levels anyway. It is like experiencing childbirth. With a broken leg.<br />
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On Wednesday, I blew past that level about an hour into the episode...or so I'd say. Let's hope the revised meds do the job.Unclehttp://www.blogger.com/profile/17576979900477102398noreply@blogger.com0