Time to meet your host!

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

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