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Taking Charge (6)

Taken from the book: Taking Charge: a journey of recovery. Available for purchase (post and download) at
I really think it is time for medicine to reassess the way it views so-called ‘alternative’ therapy, begins to believe some of the excellent research which now abounds for various therapies not formally part of western medicine, and acknowledges that many thousands of years of alternative practice cannot be wrong. Surely, like everything else in life we should attempt to use the best of what works (perhaps in combination); perhaps, more importantly what works for you. The solution is always more important than a slavish following of single traditions, albeit that we have to acknowledge the basic dictum of all care – ‘first do no harm’ (primum non nocere).
The bony spine provides a box around the spinal cord (all the nerve tracts up and down to the brain which need to be protected). The problem is that ‘the box’ is not totally rigid. Within certain limits it is flexible, and allows us to bend down or squat down (forward and backward flexibility) and tie a shoelace, or twist so that we can reach behind us when sitting down (rotational movement). It allows us to use our left hand to reach round and scratch an itch on the skin of our right shoulder blade, or allows us to bend sideways while sitting down and reach sideways to get a book off a shelf. All of this is controlled by an intricate set of muscles which work together to both move and protect the spine. In very general terms our neck bones (cervical spine) allows us to rotate, twist, and bend/straighten our head. The chest spinal bones (thoracic spine) are a bit more limited to bending and straightening fore and aft, and the lower back (lumbar spine) allows us to twist but has little fore and aft bending movement. Of course the whole thing works as a unit - all contributing to any one movement.
I was watching my grandchildren open their presents on Christmas Day. They had been waiting some time (or at least they thought they had), and all they wanted to do was get at what was under the tree. So within minutes, with little formality, each of us had a rough pile sitting next to us. Well that was true for the adults; the children had struggled to create a pile mainly because they wanted to open things as they went. They were not interested in the labelling, are unlikely to ever know who sent what and, to tell you the truth, are even less likely to write and thank the gift givers (“It wasn’t like that in my day…”), it is up to the parents to do that. So when the 5 year old started to open his gifts he totally ignored the fine wrapping that had taken someone hours to do; it all came off in seconds. The box in which something was protected was also ripped open; no cautious appraisal of any instructions or warnings, no search to find out what the contents might be about. Only the contents were of any interest, and he just knew he could work it out from there, which was correct about 50% of the time.
But in the medical profession we are not impulsive children. I was always taught that after you had taken the history, you had to look first - before you touch. So actually you can tell so much about a person’s medical history just from watching them walk into you room, before you ever meet and greet. A modern day exponent of this would be the lead character in the TV series ‘Bones’. Tempe Brennan, forensic anthropologist, gets furious with anyone who disturbs the original scene. Immediately she arrives she begins to describe very carefully what she sees, and the possible implications. (All right, she has been scripted to draw all sorts of conclusions that the rest of us could not imagine in a months of Sundays). This set of observations often becomes a very important part of the whole story.
There are real life stories that tell you why you should observe carefully in this way. An outrageous example from my own experience goes back to my first job as a doctor, aged 23, in an Emergency Department in South London. We had some extraordinary cases brought in by ambulance. The one that comes to mind is when I was called out to certify someone as dead in the ambulance (a ‘Dead on Arrival’ or DOA). I climbed into the ambulance, and found a slight male of about 40 years or so. He was lying on his back, very dead; the pooling of blood under his skin suggested he had been dead some time. So I asked the ambos whether they had any idea why he might be dead. “No idea, mate. He was lying on the floor like this when we found him.” There appeared to be some blood on the clothes at his back, so I asked if they had turned him over? “Nah, mate, we just picked him up and put him on the stretcher.” I asked them to turn the body over and there, protruding from the back, was the knife that might have caused the problem. We called the police. (I guess this could not happen today given the training our paramedics all receive, but in the 60s...).
So I am bemused by my recent experiences with doctors and my spine. They all seem to have rushed through the history, often cutting me short on what I thought may have been an important detail. So in my case, the description of the 24 hours leading up to my problem always seemed to be a bit boring for them; you could see the eyes beginning to glaze over. Basically they dismissed most of my story of stress as of no consequence. Given my past history with my spine (detailed below) I have always thought the story is much more important than they gave credit for (Well we probably all feel that…).
In essence I had a series of rather lengthy documents to write under time pressure (I won’t bore you with the details) – one by the 19th November, a second much more lengthy by the 20th November (and incorporating the first), and then a third lengthy and rather complex document by the 30th November. At the time of the onset of the problem (3rd December), I was writing an editorial – again under time pressure. But there was an added complexity to all this writing. 2009 really was not my year medically, and in March and again in July I had had operations for detached retina in my right eye. This had all been resolved, but I was awaiting new glasses to correct for all the damage. Essentially I could only really see well out of my left eye, so my writing position was really a bit odd. I was leaning forward more than usual, perhaps favouring my left side, and then craning my neck a bit more to actually see the print that was already at 14 pt and 200% - ie large. I was peering with my left eye, which means that I was probably twisting a bit to the right. I believe that overall I was twisting my spine, not just for short periods of time, but for hours on end in a writing day of 9-10 hours, and over a couple of months. Let’s leave to one side why you would be bothered to do such a thing (in simple terms, I am passionate about what I do in life (aka ‘an idiot’)).
Now we have to go back into my past history a bit just to make some sense of this, or at least to provide a context for my beliefs about my spine. Back in the 80s I was in private practice for about 4 years. I had great rooms, a superb secretary, and a very comfortable consulting chair, and was enjoying what I was doing (and keen to pay off the rooms). So bit by bit, the day extended. I saw children, or adults, or families on the hour (for 50 minutes) every hour. Eventually I was doing 13 hours a day, tiring but fascinating and satisfying, even if I had only limited time with my own kids when I got home. (OK you may be beginning to see a pattern here – someone who has always been fascinated by people, never shirked hard work, and was always willing to work long hours (OK, ‘an idiot’)).
So, I developed Sciatica down my right leg. That is, by sitting all those hours during the day, I was obviously putting pressure on a set of muscles, or twisting my lumbar spine; either or both was putting pressure on the Sciatic Nerve (basically a bunch of nerves which come out of the spinal cord, and go down the back of the leg). The result is pain, gnawing pain that is not easy to reduce by changing your position in the chair, and seems to get worse day by day. Eventually I had to do something about it, and was advised to see a chiropractor. He heard my story, looked at my spine (note!), felt all the way down the affected area, and then massaged various muscle groups (which was not pleasant; I had not known that those particular muscles down my spine and in my buttocks could be so sore - particularly one little tiny muscle called Piriformis). He put some foam wedges under my hips, and put pressure on my spine. The result was very good; within a couple of sessions I was in little pain, and a series of follow-up sessions left me confidant that the pain would not return. Then came the crunch: “Listen, Graham, you’re an idiot (this particular gentleman would have never said ‘bloody idiot’, but I heard it as such). You can’t treat your body like that, sitting in one position for hour after hour, day after day. Be kind to yourself; get up and go for a walk around the block several times a day. If you can’t do that then use one of your precious sessions (yeah, I know it will cost you), and get up and go for a longer walk, or go to a gym.” I did, and essentially have had no further trouble with my lumbar spine (there is a longer story here, but it would only embarrass me more, and we need to get back to this chapter).
Some years later, I was back in the public system, and clinical director for a service, which carries certain responsibilities and pressures. Over time I began to get rather frequent migraine headaches that would lay me low for a day or so, and lead to the consumption of rather a lot of paracetamol. Well, Jan had had some similar if more severe problems with migraines (probably in some ways from the pressures of living with me, and the responsibility for family life in the partial or relative absence of a father and husband), and had gone to see our favourite chiropractor. He had been very helpful. So along I trotted again. He listened to my story, looked at my stance, gently looked at my neck (note!), gave several muscle groups some serious massage (again surprisingly painful), and then took hold of my head, loosened up the neck a bit, and then jerked sharply to one side (a sharp click). A bit more rapid massage, and … no more headaches! Again several more sessions led to a good result and then (you guessed it): “Listen, you’re an idiot. You’ve stopped exercising, you are putting yourself under stress again”. We then explored a range of issues – like the height of my desktop computer screen, whether I had recently had my eyes tested, and the comfort of my desk chair. Mostly, the story was that I had once again started to be in a fixed position for some hours a day (did a lot of sitting in meetings), and had stopped giving myself the opportunity to free up my body with exercise. Of note I had also stopped meditating, a practice we had started as a family some years before. So we made some corrections, I continued to have preventive chiropractic sessions for some months, and… problem solved. Overall, given my practice of regular Karate over the last 20 years, my now ongoing meditation, and some other changes in my lifestyle, I have never had Sciatica again, and only very rarely get a migraine like headache. All of that then is a long-winded way to bring us back to the current problem.
So here I am with a problem in my thoracic spine – admittedly, according to all the tests, it is the spinal cord (the soft bit inside the box) that has been damaged, and has caused all the neurological symptoms. But since I have had this current problem, only one person has ever fully examined my thoracic spine (more of that later), and they are not part of the medical team that looked after me for the first 5 weeks after onset. I tried several times to interest people in the ‘box’ around my spinal cord (“Do you think it could be something wrong with the bones of my spine?”) – nothing. Nobody on the medical team seemed to think the idea might be plausible, nobody looked to see if my spine was straight or twisted, nobody checked to see which muscle groups were sore, nobody looked to see if anything was out of place. The bit that is really weird is that they allowed, nay expected, me to lift myself up, attempt to roll over, use the monkey bar attached above the bed. Nobody seemed perturbed; there were no prohibitions or restrictions on what I could or should do with my thoracic spine.
I have to admit I am glad they did not try to cotton wool me; I can imagine that if they had wanted me to keep my spine absolutely still during the period of investigation, I would have gone nuts (not a good thing in a psychiatrist)! But supposing this was something self-induced yet again, supposing I had done something to my spine that was the cause of the whole problem? Supposing that the stress of the day before and then my teaching an enthusiastic Karate lesson had set something up (some twisting or bending) which had then set into position while I was writing my editorial. My constant (eye-glazing) question has been “What should I not do again, so that I don’t get this happening again?” To which thus far there is no answer except “Don’t know” (which to my mind seems also to suggest they consider my thinking awry).
They did examine my lumbar spine on the several occasions they attempted lumbar punctures, but never strayed into the territory of the thoracic spine, except to note the difference between thoracic and lumbar to define where L1 was so they could count down to the space between L3 and L4 to put the needle in. Of course, along the way, there have been many Xrays, CT scans and MRI scans which must have shown the spine in glorious detail, and I am sure someone must have considered and reported on the spine itself. But, to this day, I don’t know whether anyone examined the bony bits, and certainly no-one on the medical team commented on reports on the spine itself and, if they did, no-one has ever discussed it with me.
If I had to describe the feeling in my legs in broad terms it would be that it is like when you have put pressure on a surface nerve for a while; you get this feeling of numbness, tingling, and the muscles don’t work as they should. I am sure you would have found yourself leaning at some time on your elbows, engrossed in a book, or watching the television, and when you move you realise something has been pressing on what is known as your ‘funny bone’. In fact when you get the sensation from being hit on the funny bone it is because the ulnar nerve travels over the surface of the bones at the elbow, and is easily accessible. Pressing or hitting it temporarily stops the flow of energy up and down the nerve, and your little finger ‘goes to sleep’, feels numb, tingles, and doesn’t work. After the hit, or when you stop leaning on it, the flow in the nerve gets going again, the feeling comes back, and you are not sure whether to laugh or cry.
So, I had been holding on to this idea that there was something pressing in a similar way on a part of my spinal cord causing first the loss of sensation, followed by the return of tingling, and some recovery of bits of movement.
This was confirmed in part by my acupuncturist who one evening while sticking needles in my back said: “You look like you have a subluxation at about T6. On the left there is a bit of a bump, and on the right there is a hollow.” I can’t really prove my theory that this external problem in ‘the box’ may have caused the internal problem in my spinal cord. But then all the expensive tests I have had have not been able to prove that I had an embolus from somewhere that got stuck in an artery supplying the spinal cord at just that point, or perhaps have some sort of inflammatory transverse myelitis.
Along with my own causal hypothesis goes the thought that if whatever is pressuring the cord could be relieved, then over time I might get more recovery. Dangerous thought. This is not to avoid the fact that ongoing physiotherapy is going to provide the basic building blocks of improvement for both my sensory nerves, as well as those supplying muscles and movement. But my life’s experience told me I should go to see a chiropractor or an osteopath. Luckily despite moving from South Australia to Queensland several years ago, through family connections we had a number of excellent options; people in whom we had some trust because of their qualifications, their experience, or our experience of them with other issues.
Now, do you tell the medical team, or not? We had certainly explored the use of acupuncture with both the doctors at RBWH and at the PAH Spinal Unit. But having discussed this over 3-4 weeks, I decided this one was our business, would cause serious ructions (which I did not need – I had been through enough battles), and might even lead to an unnecessary forced choice. I guess we realised that there was a very real risk involved given occasional media reports of catastrophes following chiropractic. Well we discussed all that backwards and forwards, and concluded we were prepared to take the risk. Call me arrogant or stupid, but I was willing to take the risk. 
There was no way we could make arrangements while I was in the Royal Brisbane, the logistics were too hard. But on a Monday afternoon I arrived on the Spinal Injury Unit by ambulance. On Tuesday at lunchtime Jan and I sneaked off ostensibly to go to lunch. Now I say ‘sneaked off’. In fact we went with permission from the staff. I could do the transfer from wheelie to car. We put some plastic on the seat to help me slide across (but really in case of accidents). At the other end, about 2 kilometres down the road, we reversed the process, and I went for my first chiropractic treatment.
Actually he is a qualified and experienced osteopath. He listened to the lengthy story, was interested in the results of investigations to date, and then took further interest in my chiropractic history – essentially my rationale for being there. Then, having been asked if I was happy for him to touch me, I was lying on my tummy with my back being explored carefully (looked at!). There was confirmation of a possible subluxation (a bone slightly out of place) at the T6 level. All the little points of soreness around what seemed to be the original ‘injury’ site were noted, as were a number of possible problems (including dear old painful Piriformis again) further down the back into the lumbar and sacral spine areas. Some of the sore spots were massaged. Then I was turned over, and my tummy explored including a really sore spot on my right Psoas muscle (that lines the inside of the back and has some control over posture). Finally we reached crunch time (literally), and I sat up (somewhat wobbly) with crossed arms (and my fingers), and was hugged in a particular manner that created several clicks (a small crunching sound) in my back.
With bated breath I waited… These things can go wrong… Those press reports… Doctors take great delight in telling you about the cases that went wrong… I am sure that, as with every physical procedure there are phenomenal risks. So, bated breath… and… and nothing. Just felt OK, but not substantially improved. No magic sudden surge in feeling. OK we are told that any results may be over a couple of days. Any adverse effects? No. Am I grateful? Very. My past history should tell me that there will be no problems, but you still wonder.
Then I began daily physiotherapy in the Spinal Unit every afternoon (more of that in a later chapter). Wednesday evening I had one of my ongoing acupuncture sessions on my bed, behind closed curtains (with full written permission from the hospital). So by Thursday (my 3rd physio session, and my 4th day on the unit) I was standing much more confidently, walking unaided with the parallel bars (the death grip replaced by light touch when needed). The physio obviously thought I could do more, so he tried me on the rollator - a walking frame with wheels. When this seemed to work well, he tried me with elbow crutches, with which I was OK but not too confident. On Friday I was trained on a walking frame with no wheels (not the crutches), and also taught how to get up off the floor if I fell. Amazing progress; each step of progress just makes you weep. After this session I was given a weekend pass to go home – to practice on the frame, as well as practicing a whole list of exercises for specific muscle groups, especially my hip abductors.
So my observing and sometimes scientific mind asks: “What is making the difference? To be more precise, which single treatment is helping me to improve so rapidly?” To which the answer is a combination of things. “No, no, no!” goes my left brain “which single treatment?” To which the answer is I don’t know, and I don’t care! It is actually a whole heap of things. It may be the type of original problem, and the fact it never totally traversed the spinal level; it could be the fact that I have been a very fit person for my age, eat well, and exercise regularly; it could be that I have a good reservoir of strength (particularly core strength); it could be the rest I had in hospital for the first 4 weeks; it could be the Dexamethasone I had during the first 3 weeks; it could be the quality of the physiotherapy I had in the early sessions at RBWH which gave me such confidence; it could be my essential spirit to overcome adversity (also called by some ‘pigheadedness’); it could be all the little exercises I did in the early weeks to find out what still worked.
However, I believe that acupuncture has played an enormous role in my improvement, with the regular sessions since the very beginning of my problem. I believe the chiropractic session did indeed make a difference within a few days, it sort of ‘freed me up’; I cannot describe it any other way. I think the careful specificity of exercises from the physios played a major role in helping me regain strengths that I had lost. At the end of the day it is no one thing that has made a difference – it is a whole combination of things over time. But I can say with utter confidence that without the acupuncture I would be nowhere near where I am at this time of writing. I can also say that I looked forward to my second and subsequent chiropractic treatments with nowhere near the anxiety I felt about the first session. I believe it freed me up further to be ready for the further gains I expected from acupuncture and physiotherapy.
So am I in a position to advise you on your medical journey? Of course not. Only to say that as with all the chapters in this book, I urge you to take charge as much as you possibly can. Contribute what you can to the discussion about your own care. You may not have medical knowledge; you may not know how to diagnose your problem or what therapies are available for your condition. But you do know your own body. You do know what is likely to help you because it sounds right or feels right, or because it has helped in the past. Conversely you know what is likely not to be helpful, because you tried it before, or because everything you have read on the Internet frightens you, and no-one has been able to reassure you enough. If you believe in an alternative therapy, then discuss it with the medical team. Listen to what they have to say. If you need to get some other advice, then get it. The most successful approach is for you to be in the best possible partnership with your treating team, but this is a two-way street, and needs for them to have some respect for what you might know about your own body, from past experience of living in it for many years. Don’t alienate professionals, but equally don’t be frightened of seeking alternative medical care to work alongside ‘Western’ medical care. 
Ultimately, make up your own mind, or discuss the whole thing with your family and decide on things together. Take charge as far as you can.