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Medical

So who the hell is this guy?

Your host. Makes me sound like I’m harbouring a virus, doesn’t it?

I’m a semi-retired self-taught polymath, a lover of science, and an passionate student of nature. In other words, a metaphysical naturalist, as was Charles Darwin, Robert Hooke, Leibniz, and (I’m sure) many millions of other rational, passionate, questioning (but far less famous) people.

My original training was in electronic communication systems with Telecom Australia, later branching into circuit design and fabrication. I’ve also had around 30 years of commercial and personal software development. However, I’m also deeply interested in, and pretty damn handy at a fairly eclectic range of activities, including :

  • Astronomy (including cosmology, cosmogony, and stellar physics)
  • Audio digitisation, capture, analysis, and restoration (my day job)
  • Car and motorcycle racing (amateur, at least pre-spinal injury)
  • Car and motorcycle tuning and rebuilding
  • Cookin’ up a storm
  • Database development and management (C/S and tiered, RDBMS and flat)
  • Heraldry (because you never know when you’ll need a bar sinister)
  • Music (playing pretty much anything badly, and some surprisingly good composing)
  • Pain medicine; particularly neurophysiology and neuroanatomy, as well as neuropharmacology
  • Poetry (improving every year)
  • Religious textual criticism (because you need to know where the BS comes from to kill it off)
  • Robotics (again, surprisingly good ideas, but without much mechanical engineering skill)
  • Roman history (Gibbon’s three volumes are so cracked and dog-eared, but it’s such a hoot!)
  • Website design and development (since 1992!)
  • Whitegoods repair; and even
  • Wildlife photography (Australian fauna & flora, astronomical stuff, and some really weird shit)!

I’ve been lucky enough to gain experience with many of these subjects as paid work, for which I’m eternally grateful! There’s nothing that will hone your skills like people expecting a bit more than they paid for, which is always a great way to learn stuff!

Basically, you can give me a non-functioning car, television, tractor, aeroplane, robot, or hovercraft, and I’ll probably be able to fix it, and I may even have some bits left over at the end!

I’ve actually spent most of the last decade working as an audio restoration specialist. This combines a few of my passions, notably music, a rather good ear for noise and distortion, bleeding-edge computing (including RAID 5 storage systems, liquid cooling, and 64-bit OSes when RAIDs, liquid cooling, and 64-bit OSes were a bit of a novelty), and customer interaction. It turned out that I was great at what I loved, so again I lucked in.

Unfortunately, a medical issue has cut back my hours of formal work sitting up, but with wifi and laptops, I can almost keep in touch with the world just as well lying down for 20 hours a day.

From mechanical… …to anatomical!

I’m also learning to properly and fully understand how the human body (particularly my human body) works, at the level of the individual cell mechansims, cellular DNA structure and replication, gene expression, organ function and dysfunction, pharmacological intervention, and most particularly (because of my spinal problems) pain and neurophysiology. I understand (and I’m growing quite familiar with) the various structures and features of human anatomy and physiology, such as the most “popular” organs and tissue types! (Brain, central and peripheral nervous system, liver, and colon-related stuff, mainly due to the impact on all of these and the side effects of all the painkillers I’m on).

I actually understand (roughly at the equivalent of a third- or fourth-year medical student, and improving every week) how neurones work, how pain helps and hinders us physically and emotionally, and how pain is detected, transduced, transmitted (electrically and chemically), how it’s relayed, and how it’s perceived and integrated within various brain regions. This includes intercellular (and extracellular) signalling, various protein and amine synthesis, hormone traffic, gene expression, upregulation, and various cascade sequences. It’s surprisingly fun to learn just how complex and sophisticated our neural system is. We take so darn much for granted, awake or asleep, and there are so many layers and feedback loops and scatter/gather circuits that it’s amazing it all works at all, let alone grows, self-maintains, and does it’s best under terrible damage. Just incredible.

The Pain Train

Surprisingly, pain medicine is one of the last great outliers of our medical understanding. You’d be shocked at the immense number of processes and functions we have absolutely no idea as to how they actually do stuff, in terms of signalling, modulation, perception, transmission, and reflection, at the atomic all the way up to the macroscopic! So many chapters in all the textbooks finish off with the words “we don’t fully understand the regulatory process interaction”, or “This is an area of great opportunity to up-and-coming researchers”, or “How does this happen? We just don’t know”! I guess it’s a really exciting time to be a neural researcher – a bit like the 1960s were the new frontier in space technology and exploration.

Areas that are changing with each new discovery range from ion channels and ligand-gated cascades, to exactly what a pain receptor looks like. We actually have very few clear images, believe it or not, although that is now changing month by month, at long last, as gene synthesis allows some of these structures to be grown or duplicated away from the live cells.  We know there are about 5 or 6 different major neural cell membrane receptor types, but there seem to be more subtypes every time we get close to a definitive list! Mostly, what we have is guesswork and estimations that rely on the massive advances in physical nerve imaging, functional brain mapping (PET, MRI, fMRI, CT, and so on) and single-channel current measurements. Yes, you can actually take a single G-coupled protein receptor (GCPR) on the surface of a single nerve cell, isolate it, and turn it on and off like a light switch! Naturally, this is a gross and clumsy oversimplification of how the body fine-tunes absolutely everything, but it’s becoming just a little easier to get closer to controlling and characterising individual structures almost as cleverly as the body does. But it’s still a jungle in there!

Worth the hard work? Yep.

As I said, this means that neurology is one of the most fascinating and exciting areas to have an interest in right now. Oh, sure, there are plenty of other areas of medicine that are growing and expanding almost as quickly as the neurosciences, but when you think about it (pun intended), pain and neural signalling defines what we are, and how we perceive reality. So learning this stuff is like looking into your own mind from behind. Unfortunately, as I’m not a medical person, I’m looking over the shoulders of many, many researchers and specialists, and the medical arena is one of the last bastions of the “old school” privy groups and ancient orders of chirurgeons and so on. And even more sadly, I know that’s unlikely to change in any way that helps me learn more. But at least I can cheer on the teams, and learn something new and exciting every day. What’s not to like?

Unfortunately, I have to focus on one area, because I’ll never have the time and resources to understand everything! So I’m primarily interested in understanding – and contributing to in a meaningful way – opioid pharmacology, as well as alternatives to pharmaceutical interventions such as hypnosis, stimulants, depressants, molecular agonists and antagonists, breaking the cycles of internal cascades, NO (nitric oxide) synthesis and the terrible damage that does, and so on. Unfortunately though, everything that we can point to as a byproduct or enhancer of pain also tends to be critically required for the smooth functioning of the rest of the nervous system! So it’s not an easy thing to find a way in that won’t render you retarded, congenitally blind or deaf, or worse (and there are worse things than those when your nervous system goes off the rails, let me tell you!).

Unfortunately, my inability to comprehend higher-order mathematics (I can just barely integrate and differentiate, but it hurts!) severely limits my understanding of the deepest underlying explanations for many of my most passionate interests (astronomy in particular). Luckily though, at the moment the requirement for the level of competence I’m at doesn’t need much more than basic maths and a bit of statistics. So far, so good…

So why pain and neurology, exactly?

I have a really badly damaged spinal area, right between the shoulder-blades. This is usually called the thoracic spine. In my case, only a very few thoracic vertebrae (T8, T9, and T10) were damaged by a number of accidents I “participated in” while I was a motorcycle rider (1981-1995).

This area of the spine was “fused” (a laminectomy) by fixing two vertical plates along the damaged part of my spine, and these are screwed to the vertebrae using 35mm (about an inch and a third) titanium bone screws into two bony columns (the pedicles) that extend from the front of the spine – where the discs go – to the back of the spine, where the bony spines stick out that you can feel in your own back. A part of my iliac crest (the left pelvis) was chipped off and pulverised and then placed around the metalwork, after grinding off some of the surface of the joined vertebrae. This bone material acts something like living cement – the bone all grew together, so it’s a living part of the “repair”.

Here’s what it looks like under x-ray fluoroscopy (like a shadowed version of plain x-rays):

Thoracic fusion (bars and screws) plus the old mechanical pump

And just so the context is clear, this is more or less the full spinal image, below. You can also see the scoliosis (bend in the spine from the left to the right) that’s giving me some curry at the moment.

What stays up…

Pumps One through Five

The fusion was done in 1992, by Mr Graeme Brazenor at Epworth Hospital in Melbourne. While it helped the pain tremendously, it didn’t completely fix the problem (plus, the damage is spreading as the top and bottom joints of the fused clump have to work much harder than when the whole spine could articulate). And I’m not getting any younger, sadly.

So in 2000, I had a device called an intrathecal pump implanted in my chest, which delivers painkilling drugs via a tiny tube (catheter) that runs over my ribs and down my back to near the base of my spine. This ends in a tiny pair of beautifully-crafted tubes which are inserted between the spinal cord itself and the complicated “wrapping” around the cord (called the “subarachnoid space”, because the “arachnoid mater” – the outer part or sleeve around the spinal cord itself – looks a hell of a lot like a spider’s web!).

After running through the normal opioids in quick succession (morphine, pethedine, midazolam, then a bupivacaine and marcaine cocktail, then fentanyl), my own research turned up stuff called sufentanyl, which is a morphine-like synthetic drug that’s around 3,000 times stronger than morphine. My pain management specialist agreed it was worth a try, and it seems to be working reasonably well.

That little pump (a Medtronics Synchromed II 40) consists of an expandable reservoir (40ml, as you’d guess from the model name!), plus a small management computer and an incredibly engineered rotary compression pump. The pain management specialist (an anaesthetist by trade, due to the type of drugs used) fills the reservoir by using a special “non-coring” hypodermic needle that goes in through my chest wall, through an extremely robust self-healing silicone “bung” (you can see it in the very centre of the image below, the whitish looking translucent circle), and into the reservoir. Then they can program the pump using a small hand-held computer with a RF antenna that works through the skin. I’m also able to use a device called a PA (patient administrator) to tell the pump to give me an extra “surge” every now and then, when I need extra pain relief.

The intrathecal pump – an internal view

When is a pump not a pump?

The original pump was installed in 2000, and it’s been replaced five times. The first two times, the pump was replaced (by one of Australia’s best neurosurgeons, Graeme Brazenor) because the battery ran out. The pump typically runs for about 4-5 years limited by the internal battery. The battery life depends on how much drug needs to be delivered, how hard the pump has to work, how hot I get,  and so on.

Unfortunately, after my long-term pain management specialist retired, things started to go terribly wrong.

The pump was replaced a third time – and then had to be removed and reinserted a fourth time, two months later, because the new specialist (an anaesthetist who, it turned out, had delusions of surgical adequacy) screwed up the operation. Twice. The first time, he destroyed the catheter – which meant that he didn’t actually test the new pump before sewing me up! Not only that, but he was a lazy son of a bitch, so instead of using the correct tools, he took a shortcut – which resulted in my getting another scar, which was unexpected (to say the least!). I had terrible problems from the moment I woke up postoperatively. The nursing staff were beside themselves, as they could see and hear how much pain I was in, but the new pain specialist didn’t listen to or believe me (or the nurses).

In fact, it took me nearly three months to finally convince him that he and his little protégé had botched what was an extremely simple operation. And then the same incompetent idiot left too much of the replacement catheter curled up around the pump, instead of trimming it to length as specified by the manufacturer. You can begin to understand what kind of a professional this guy was, can’t you?

So shortly after the ‘fixup’ operation, the catheter got twisted and intermittently crimped itself off, a bit like a garden hose that’s been bent too much! (That’s why the manufacturer recommended that the catheter be cut to suit). It took me another two and a half years to convince anyone that there was a real, serious problem AGAIN.

Tweedledum and Tweedledumber

Meanwhile, I’d had a fairly robust disagreement with Dr Courtney after I recommended that he hospitalise me to radically increase the medication level – which he did (hospitalise me) but then didn’t increase the medication to anywhere near the recommended level! I was frustrated, in awful pain (the pump still wasn’t working properly, although I didn’t know that it was the crimped catheter that was making things difficult for me), and he refused point-blank to increase the dose to an equivalent of about 10% of the pre-operative (pre-the first operation he bunged up, anyway) dose. I was in tears, on my knees, literally begging him to give me some pain relief…but he stormed off in anger and left me there like a fart in a bottle.

Well, I had nowhere else to go, so I discharged myself from his clutches (that’s the first time I’ve ever done anything like that!), a couple of nurses who’d overheard the “conversation” dropped by to give me a hug and a kiss goodbye – once again, the professional nursing staff could see how much pain I was in, while the pain specialist shouted at me to be quiet because I didn’t know what I was talking about!) That’s the kind of bullshit chronic pain patients have to deal with here in the Middle Ages of Pain Medicine in Australia. I kid you not. So I got home, filled a couple of prescriptions for pethedine, and self-administered that until it ran out, and I could get the sufentanyl in the pump via the new, improved pain specialist. That’s what I was reduced to. I shudder to think what other patients without my kind of medical knowledge would do…

But the saga didn’t end there. Oh no! Courtney’s sidekick, Andrew Muir, (who’s apparently a technically brilliant anaesthetist) contacted my wife shortly after the hospital discharge SNAFU, and asked us to meet him at a different suite of offices to where we usually went to see him. We did so, expecting his usually chatty, humorous self… but this time, he flew into a rage, furiously accusing me of faking my injury and pain, then he advised me to seek psychiatric help, as I didn’t have a physical pain problem (!!) Then he took a nasty verbal swipe at my original pain management specialist, accused him of operating outside medical safety limits, then told us to leave. Now, the pain manager he abused had retired (hence our dependence on the new hero), and he was one of the most compassionate men in pain medicine in Australia. Hell, he became a bit of a friend to Fran and I, as you’d expect after 16 years of treatment!

I’m not making any of this shit up. This is what happened, almost verbatim. You can see what we have to put up with here in Australia. And believe it or not, Andrew Muir is regarded (probably rightly) as one of Australia’s leading edge anaesthetists! Pity he didn’t have a bit of compassion for his patients…

So, after all that crap, for the past three years, I’ve been in terrible daily pain, over and above what the pump used to manage, while the various specialists refused to believe that anything was wrong with their surgical work, then hurriedly covered it up after I rubbed their noses in it, then they retaliated like little kids in a playground. So there we all were, waiting patiently to find another pain manager, and hoping like hell we found one with a human heart. Fingers crossed!

I guess the moral to the story in this case is that when the technology works, it works really well; but when less than competent people are involved in such delicate and difficult work, it’s very easy to get a spectacularly terrible result!

But wait – there’s more!

So after all the embarrassing bullshit from the two twits, we eventually found another pain specialist who installed a neural stimulator in my buttock. This is kinda like a TENS machine (transcutaneous electronic neural stimulation) that you see people using to help with muscle sprains and so on, only in my case, it’s installed under the skin and directly attached to the muscles under my shoulders and around the thoracic spine. The control unit is recharged through the skin, using radio-frequency energy transfer to recharge, which is pretty cool technology!

OK, truthfully the stimulator doesn’t help directly with the pain – after all, it’s actually masking one pain with a slightly less intense one! – but it does give me much better flexibility and movement, as it seems to reduce the muscle spasms a little, and that’s good enough for me!

Unfortunately, I couldn’t convince this new surgeon to put it in my right pectoral (chest) wall, like the pump that’s on the left, so it’s been shoved under my gluteal muscle. Unfortunately, as I’m the patient and I have to charge it, the placement makes it incredibly difficult to charge, as the charging plate (antenna) has to be pressed hard up against the muscle. That makes it fairly uncomfortable to recharge for more than a few minutes, and since it takes around 3-4 hours to fully recharge, I don’t use it as much as I’d like. But it’s there in an emergency, as long as I remember to part charge it each day.

And for the sake of completeness, here’s what I currently look like in x-ray images :

All three devices – fusion (upper middle); Intrathecal pump (upper right); and neural stimulator (lower left and dotted lines in top half of the image)

So there you have it. That’s the whole reason I’m so interested in pain and neurology – it’s my raison d’être, if you will. The terrible treatment I received over the past three years has just given me the courage and determination to take something positive out of the whole shitfight.

The way I figure it, is that I have to live with it, day after day, so why not learn what’s going on, so I’m teaching myself the required medical knowledge, and maybe I can help other people who are in the same situation, but who, for whatever reasons, can’t take the opportunity to learn all this fascinating stuff. That’s my hope, anyway.

And I’d rather have interested people be able to see what is possible, and why it sometimes goes wrong, than to just mumble something about computers, and pretend that it’s always perfect. Because I can assure you, it’s not. But it’s a hell of a lot better than the alternative.

Again, thanks for reading all this, and I hope it gives some readers some hope for their own pain management, as well as the sort of things to look out for, and the sort of medical practitioners to avoid like the bubonic plague!

If you’ve got any questions or comments, feel free to ask, I’ll be happy to explain anything that seems confusing, or if I’ve missed out anything. I’m happy to help out if I can!

– Cephas Q. Atheos

Whatever doesn’t kill you makes you stronger!

– Someone who never experienced back pain.

Back pain is a unique kind of pain.

If you suffer from back pain, any back pain, you already know how difficult it is to explain just what it does to you, both mentally and physically, to people without familiarity with back pain. It’s just one of those concepts that you can’t understand until you’ve felt it personally.And if you suffer from chronic back pain – where the pain just won’t go away – then it’s almost impossible to expect people to understand. They think you’re just exaggerating.

I’ve learned that most people I come across have no possible concept of the  unending, savage pain someone with chronic back pain is feeling. I have to remember that most people use panadol (or maybe nurofen) to deal with their worst possible physical pain – and they think that’s a powerful painkiller! I know that none of the panadol or codeine family does anything at all to help me – it would be laughable, if it weren’t so damned difficult to get other people to comprehend real chronic pain! So for most people, who’ve only ever experienced an occasional migraine, or a broken arm or leg or rib, or maybe an operation or two, the kind of pain associated with back pain is a whole new level of hurt, and they just can’t understand it.

The closest I can can think of, in terms of real intensity, is childbirth. But then in most cases, it’s over in a day or two, and at least at the end of the stay, the mum’s got a prize to take home with her. But most people, even most women, can’t comprehend what it means to have never-ending childbirth pain in your spine, every second of every day, day after day, week in, week out, year in, year out. It just doesn’t compute.

Oh, I know what you mean!

I think everyone reading this who suffers from chronic back pain (or any kind of chronic pain problem) will relate to the following experience. Someone you work with, or maybe a distant relative, or a friend of a friend, will come up to you one day and say, “I put my back out last week. I had no idea how much pain you must be suffering!” It’s kind of an apology, in many ways – I’ve found that the people most likely to say things like that to you are actually just like most lucky people, the kind of people who’ve never felt more than a mild headache in their entire life. And so they kind of assumed you were one of “those people” who said they had a back problem, but didn’t really look like they did, and if you were, you were making it seem worse or less than it was. Unless you wear an external brace or something physical, of course, that’s always an instant empathy magnet. (I’m not being cynical, it’s the way people really work. I get more offers of assistance when I’m carrying a walking stick than when I don’t, no matter how slowly and carefully I walk).

Being nice – worth a try.

Dale Carnegie, for all his faults, taught me some really valuable lessons about dealing with people across a barrier like pain.

I’ve learned to be diplomatic when people approach me with their new understanding of back pain, and I end up saying “Well, pain’s pain, and we all feel it”, and then ask them about their discomfort and offer suggestions to help them feel better. So we generally don’t talk about me, and I pretend to be interested in them (and if you pretend long enough, guess what? You actually do get genuinely interested in them – and people can tell when you’re being genuine!). That approach allows me to not be the centre of attention, but to get them to express their negative feelings about pain and how it affects them, which helps them to project those feelings back on to you. So they get to understand how you feel, not by you telling them about the ice-picks in your spine, the fire in the small of your back, or the clenching hell between your shoulders, but by letting them put their own words on their experience, and you looking like a patient, forbearing, nice person with a hidden secret that they now share in. It feels good, let me tell you, and they almost never forget what you go through. Try it, it’s worth the effort.

But it turns out that this is a Bad Thing to do, when it comes to medical personnel!

If You Feel It, Let It Out!

One of the most difficult things I’ve learned over the past few years is how to strike a balance between letting health professionals (like medical receptionists, GPs, specialists, radiologists, and surgeons) know how much you’re hurting, and not being overly dramatic or foolish about the whole thing. The last thing you want is people you deal with regularly thinking you’re some kind of drama queen or pathetic whinger, especially when you understand they deal with people with far more terrible pain and problems than you. You’ll appreciate this when you go to a new pain specialist, feeling pretty miserable after a bumpy, hours-long car trip, and suddenly find a waiting room full of wheelchairs, portable ventilators, armless/legless people, and worse. It makes you feel a little insignificant – which it should! – but it doesn’t invalidate your pain.

I’m naturally a happy-go-lucky son-of-a-gun, and I can wear an awful lot of pain without continually grimacing or grunting or moaning and groaning. As you can tell from my little stories above, I naturally try to make other people feel comfortable around me – it’s just the way I tick. So I like making jokes, smiling at people, making eye contact, expressing interest in their little problems, and doing what I can to not be a miserable bastard, but at the same time, I need to let them know I hurt more than they can imagine.

So I’ve discovered that this natural humour works against me, especially when I have to deal with new medical people. In fact, I’ve found out recently that it makes them think I’m not in as much hellbent agony as I really am – and that’s led to three pain specialists thinking that I didn’t deserve their respect or treatment. I’m now on the search for a new pain management specialist, and hopefully by this time tomorrow I’ll have one.

Then the training begins – I’m going to have to teach yet another medical person how to work with me instead of treating me like a piece of meat, how to talk to me without dumbing it down, and how to make sure they “get” me and my goals and aims.

I’ll discuss some of my medico-training strategies in a later post later on. Right now, I gotta lie down and get my sanity back!

Thanks for reading, and I hope this gives you some tools to help deal with this sort of issue in your own life.

Please, do feel free to add your own ideas, suggestions, and comments below. Or, if you have some questions, or if you think it sounds too easy (or too difficult), let me know and we can maybe have a chat and figure something out that will work for you – or you can tell me your ideas and they might help other people in the same boat!

Cheers,

Cephas Q Atheos

Life is pain, highness. Anyone who tells you different is selling something.”

Westley (Cary Elwes), in The Princess Bride

Pain is wonderfully Subjective!

If there’s one thing that chronic pain will do for you, it’ll focus your attention. While that’s usually seen as a Good Thing, it loses its lustre when you realise it’ll focus your attention whether you want it to or not, pretty much permanently. I’m lucky enough to have been able to use that tortured focus to learn about pain – objectively, as it were, instead of just experiencing it and whinging about how it’s ruined my life (which it has – as many hundreds of thousands of people around the world know far too well).

Now, I’m not saying I’m a medical specialist of any kind. Far from it – I’ve known too many medical pain specialists to want to be counted amongst their number, one or two individuals notwithstanding (Bruce Kinloch, we miss you!). Personally and professionally, based on the last twenty-three years of close interaction with these medical specialists, I can only consider most pain specialists the worst kind of medical dilletantes – who, despite their occasional declaration of compassion, have no comprehension of the second-to-second realities of chronic pain in their patients. So, despite these specialists’ best intellectual intentions, the incoherent torture of severe chronic pain is only exacerbated by calendar-driven delays of weeks or months (the apparent minimum time period defined by their Alma Maters, Colleges of Chirurgeons from the 17th Century), fiercely protected by middle-aged Personal Assistants who have more invested in their employer than their clients will ever benefit from.

They are, with one or two exceptions, Pain Specialists indeed – the worst practitioners ensure ongoing and unrelenting pain exquisitely well!

As always, the exceptions prove the rules, and the few genuinely compassionate and helpful Pain Specialists who do exist, and who aren’t guarded by unfeeling bureaucratic pencil-pushers, are well worth searching for. (For more reasons than I’ve just alluded to, as I’ll explain below).

 Mea Maxima Culpa

Over the past twenty-six-odd years of more or less interminable agony, I’ve not only wondered “Why me?”, but I’ve actually tried to find out why I’ve been afflicted with the male equivalent of a spinal childbirth every hour in those 26 years.

And I finally have some answers!

Let me just state, for the record, that I’m not just doing this for myself. While I started out on this quest for the most selfish and self-centred reasons, I’ve been exposed to a surprisingly varied array of persons in the same, or (more usually) far worse situations than my own, and it seems that what’s good for the goose may also be good for others in a similar position.

I’m no Albert Schweitzer, I’m more of a Barry Marshall – I saw a need for some actions, I requested medical approval, with appropriate medical evidence, and I was repeatedly (and arrogantly and nastily, in some cases) denied their support. I’m not sure why, but I suspect Turf Wars may be at the root, although I can understand why someone with thirty-odd years of complete medical training wouldn’t want to be upstaged by a non-medical person with only  a few years of reading scientific papers and a badly-scanned copy of the 39th edition of Gray’s Anatomy.

I guess what the medical individuals concerned didn’t realise was that for individuals with chronic pain, anything within reason is worth trying, if it will help reduce the never-ending agony. Actually, quite a few things outside the scope of reason are worth trying: my abortive suicide attempt didn’t work only because I didn’t realise the nature of barbiturate overdose. I suppose I’m grateful for that lack of knowledge. I know better now – but I also know that popping my clogs, apart from the terrible impact it will have on the people I love, is the fool’s answer. I now know enough to at least fight for the right to be heard.

They also didn’t realise that I’m something of a “Renaissance Man”, in the strictest sense of that term. I’m the 21st century equivalent of Robert Hooke, albeit with more modern concepts of intercellular chemistry, physics, and medicine, and I hardly ever drink elemental quicksilver.  I’m not saying that to bang my own drum or toot my own trumpet, it’s something I’ve come to realise over the past couple of years – I really do know a little bit about nearly everything, (in any case, far, far more than the vast majority of people); and it seems to me that the best way to expand my knowledge is to use myself as a guinea-pig. At least then we won’t lose anyone important!

The Options

There are two areas I wish to evaluate for myself in the very near future. These are hypnotism, and opiate antagonism.

There are actually many more alternatives and options I’d like to investigate, but I’m still in the process of bringing myself up to speed in neuroscience and neurophysiology, and I want to be sure my understanding of the processes involved is adequate. Although, I guess you can’t ever know too much!

I’m feeling Sleeeeepeeeee….

Now, I’m a bit sceptical about hypnotism generally, but only because it’s been touted and over-exposed by quacks and frauds for so long (well, ever since Mesmer himself announced his results).

Since my own chronic pain is quite specific in origin and intensity, I suspect that with the right practitioner, it might be possible to convince my unconscious self that the pain is more bearable, or (my hope) that it’s completely ignorable. These are the wrong terms to use, I know, but until I speak with a serious licensed practitioner, it’s the best I can explain.

My main concerns as far as this goes are :

  1. How susceptible am I to hypnotic induction?;
  2. How much of the pain can be ameliorated?; and
  3. How long will it last?

So those are my “Big Three” I need answered before I will start down that road.

Opiate Antagonism

Without going into the whys and wherefores just now (although I’ll be happy to explain the theory later on, if anyone’s interested), it’s quite possible that by mixing a small amount of opiate antagonist (naltrexone, naloxone, etc) in with the opiate infusion in my intrathecal pump, both my tolerance for, and response to, sufentanyl will be massively (more than 60%) decreased/increased respectively.

This isn’t airy-fairy guesswork, this is solidly backed by experiments dating back to 1985. David Meyer (amongst many dozens of other researchers) found that in the vast majority of rats with chronic constrictive pain injury (CCI), their tolerance to morphine in particular could be significantly reduced by admixing the morphine with a non-specific opiate antagonist. Not only that, but the effect seemed to be consistent over time, with minimal (almost undetectable) increase in either tolerance or potency after more than a week of trials!

He couldn’t quite believe the results, and as far as I’m able to tell, no-one else has satisfactorily explained that result. It’s been duplicated many times over, with many different species, but not homo sapiens, and never in vivo. It’s also been used to explain some other features of opiate receptor activity, but not explained per se. So here’s my opportunity!

I find it interesting that this particular group of experiments seems to have been reliable enough to be used as a possible explanation for later, related effects of opioid antagonists and agonists, but not reliable enough to be evaluated in human clinical trials. Since it involves the most insignificant and simple change to a standard treatment regime, it should be eminently testable, and easily proven or refuted!

But this treatment option in particular, was specifically (though not technically) poo-pooed by three different pain management specialists (including one of Australia’s leading pain physicians), but always with condescending tones and arbitrary and confusing non-sequiturs.

I was told the morphine would “crystallise in [my] intrathecal space and cause granulomas” (although it didn’t happen in any of the experiments), I was told that there could be no such effect since the amount of antagonist was far too insignificant to have any possible effect (cognitive dissonance, much?), and finally I was told that what worked in male Sprague-Dawley rats couldn’t possibly work in homo sapiens – at least, not in this homo sapiens.

But I beg to differ. It’s gotta be worth trying, I just have to find a pain specialist who will work with me to ensure appropriate support and aggressive examination of options, medical support, timing and measurement, and so on. Child’s play for me, but apparently an insurmountable obstacle for medical specialists. See what I mean about not wanting to be counted in their number? It would be embarrassing to me!

Who knows, maybe it will turn out that a combination of the two therapies will work. But it has to be tried, and not just for me – if it works for me, even partially, surely it warrants further investigation and more trials, especially since the test itself requires no additional resources, barriers, or ethical dilemmas!

At least I can make the attempt.

Which is more than I can hope for in Australian pain management, where I couldn’t even get the “top echelon” specialists to even consider testing a proven, decade-old shellfish toxin that’s worked well in the US for decades.

Why not? They didn’t want to divert funds from treating bedsores. They weren’t prepared to manage such a trial. It would take too long. The therapeutic window was too small. There have been isolated cases of attempted suicide (true, but then that’s also true for the current state of pain management here!). Oh, yeah, I forgot the best excuse for not trialling it over here :  it’s untested over here (I kid you not – they didn’t want to test it because it was untested! There’s that cognitive dissonance again!).

Fingers crossed, watch this space!

Thanks for reading.

Cephas Q Atheos.