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Sunday, July 7, 2013

On Transverse Myelitis and Acupuncture; a personal reflection

My son Rod (a qualified acupuncturist who had topped his year at college) began work on my body on about Day 3. We had been told a bit about what might be happening to my spinal cord, and had been given the results of all the tests including the early MRIs and CT scans. There was a ‘shadow’ from about the level of T6 down to T9 more on the right. There were arguments about what might have caused it – perhaps a little bleed, perhaps an embolus, perhaps a form of multiple sclerosis. But nobody knew for sure. Without a definitive cause, how could there be a definitive treatment?
And no-one could tell me what the course of recovery might be. I had been started on a moderately large dose of Dexamethasone and some preventative heparin to ensure I did not get deep vein thrombosis but there was no other treatment offered until I began physiotherapy about 10 days or so later. My muscles were not massaged, nor was my skin soothed where I had pain. I guess medical staff were just waiting to see how much recovery my body could make; sort of passive observation. Nobody could tell me what I might have done to myself (if that was a possible cause), and therefore they could not tell me what not to do in the future!
With permission, but obviously some resistance and concern from staff, Rod came in about 5 evenings a week after a full day at work (poor bloke!). In fact, no medical person wanted to listen to anything I said over the next few weeks with regard to sensation or returned function. They just looked perplexed, or slightly embarrassed. 
Behind closed doors (or curtains), and mostly with me laying face down, I got needles inserted locally around where I thought my spine had been damaged around my spinal cord. I don’t know or understand the pattern of insertion, so I cannot explain that. There were also needles placed down my legs in a variety of patterns. Finally there were sometimes needles placed in the crown of my head, or around my upper neck. My very superficial understanding was that the ones in my back were mostly to help local recovery, the ones in my legs to revitalise my legs (literally, given they were so dead), and the ones elsewhere were to help my body regain (or perhaps rebalance) my general health. Occasionally Rod would place needles around my upper chest in the pattern of referred pain from my T7 damage. Did the needles hurt? Mostly not! There were some spots that did appear to be sensitive. One in particular about two-thirds down my inner calf/shin has always given a reaction, made me jump, or at least made my leg jump. Occasionally, needles in the dorsum (top) of my foot would make me jump or at least twitch. Interestingly, the only response I can get from Rod when this happens is “Good, that was a good one…. So where did it travel to (radiate to)?” This is not because he is some sort of sadist getting back at his poor old father. Rather there is a belief, that the stronger the reaction, the more likely the needle is to be exactly in the right place, and the more likely it is to do provide some improvement. 
The response to his question was always a positive “Well, down toward the spot between the big and second toe” or “Up to a point on the knee”. What is interesting about these radiations, is that there is no relationship with any piece of my western medical logic. There is no nerve pathway that provides the way that the reaction travels! But if you read about Meridians in the old Chinese or Japanese texts (and I have a bit… before I got overwhelmed by possibilities), they have known about these pathways for thousands of years.
The results were (and remain) fascinating. From the first treatment in hospital, I began to get sensations going down both legs. It felt like warm deep pulses travelling down; like a steamroller driving down inside of my legs. From no sensation to these powerful sensations was just miraculous. Within half an hour, I would be dead to the world in the deepest of sleeps, waking some hours later, slightly uncomfortable from laying in the same position for a long time and with dribble on the pillow. There was a deep sense of comfort or satisfaction, a sort of total body buzz I have only got at other times from meditation. The warm bulldozer waves would have ceased, but what was left were wonderful pins and needles all down through my legs and into my toes. I could not describe the joy and hope those sensations left, when before there had only been deadness.
Within a couple of days, those pins and needles made me determined to try and move what I could so that I did not lose too much muscle, and therefore my strength and control. I began to move my feet a couple of inches up and down, the left and last damaged foot better than the right and first paralysed. Each day I would proudly demonstrate my most recent ‘trick’ to any visitors who had time and patience to watch (most of them, bless them!). Each day there was an improvement with both little and large muscles responding to the efforts. From about the second week, I would wake at 5.30am, and do a whole hour of any exercise I could think of, twisting to the side, gradually drawing up my knees further toward me, holding my knees up while I did work on my abs (such as they are). I swear that if I went two days with no acupuncture, then progress would slow perceptibly, but after one of those deep sleeps, the next day there would be little advances.
The doctors did not seem to be impressed at all. They would go through their daily routine of checking power in all directions for the various muscle groups, reflexes (always, and still, very brisk), all forms of sensation, joint position sense, and response to vibration at each leg joint. I would say that I thought such and such a movement seemed stronger, they would cast doubt with furrowed brow. The senior registrar had one of those impassive faces, not giving away a thing. She was ever doubtful. I guess she did not want me to have too much in the way of expectation, did not want me to be disappointed with the final result. I used to get furious after she left; I was just certain there was progress. After a while, I realised it was her problem (not mine), and that the medical examination is so much of a blunt instrument, that it is (probably genuinely) hard to perceive small changes. I am ultimately grateful to her, surprisingly. Her blank looks and lack of encouragement drove me to do better and better. I would have liked her to be a bit encouraging, particularly in those bleak early days when you believe you will be confined to a wheelchair. Perhaps she understood reverse psychology; but on the other hand, I know she did not.
The consultant was probably worse in some ways. He had a way of smiling a little smile: “What would you know, you are only a patient” was my interpretation, but then I have always been overly sensitive and a touch paranoid. He always looked uncomfortable, and my (?overly sensitive) thoughts were that he really wanted to avoid me, because there was no medicine that was going to work for me, and he could offer nothing to help (perhaps that should be ‘nothing to help a colleague’). After several weeks he did sort of accept my academic status and offer a couple of very good published papers on small series of patients with similar problems. I was grateful, and very interested in what was being said. Mostly he seemed to have some sort of internal dialogue going on, and was always in a hurry. I think the smile was (perhaps) defensive. The other irritant was that his internal dialogue always interrupted what I wanted to say in the way of changes I was noticing, or questions I needed to ask. You could see his eyes glaze over, as he turned to the junior registrar to demand another test. I learned very early on not to complain about physical symptoms, because the result was always another test, another uncomfortable examination.
None of the doctors ever wanted to talk about Acupuncture, and this ultimately included the people later at the specialist Spinal Unit. They did not understand it, had maybe never experienced it, could not find proper rigorous scientific studies on it, just knew there would be never be any Cochrane Collaboration meta-analyses of randomised controlled studies (and actually they are wrong! ). On several occasions, if one of the junior medical or nursing staff came in while I was having one of my treatments, they would bluster and promise to come back later, or the next day. Even the staff and a couple of ex-patients from my mental health service did better than that. Although, there is a funny story here.
One early evening, several staff visited from a group called ‘Beautiful Minds’ – essentially a group of young adults mostly recovered from mental illness and now part of a group helping other young people. None of them had ever been directly my patient. There were two of them with a full-time staff member, and my son arrived to do my acupuncture. They asked if they could watch, having never seen it before, and I agreed (call me odd, call me unethical, and possibly several other names). As each needle went in, they squirmed and said “Ewe…!” One of them is a young woman who has self-injured over the years (very badly and repeatedly), and is now a consumer consultant for several of my professional and research projects on self-injury. Her facial expressions were just the most extreme, and she asked how I could allow my son to do this to me? (She who had repeatedly taken a knife or a razor blade to herself). Towards the end, given my repeated assurances that it was not painful, she asked if she could try? My son put one needle into a point between her thumb and forefinger, much to her (and everyone else’s) amusement. She had to admit that it did not hurt, and then came a string of questions as to whether it would work for chronic self-injury. None of us know (yet).
I feel somewhat strange telling you these things, now. It feels a bit like I am being a traitor to my own training. I am a doctor, I have gained the most wonderful skills and experiences from being a doctor, and I treasure being a doctor. I can’t help that I am western trained and struggle to understand what has happened to me. I know for sure that if I had done nothing in those first few weeks after I was paralysed, I would have mouldered and deteriorated. I know I would have deteriorated emotionally and mentally as much as physically. The acupuncture made significant physical changes. It gave me hope for the future, and this has continued to the present (with the occasional bad day). It has sustained me emotionally. If you like, it has provided a holistic wellness allowing me to challenge the residual paralysis every day of my life.
I still get acupuncture every two weeks or so, sometimes just for the sense of wellness, sometimes targeted at particular aspects like the neurogenic bowel, or the fact that I get swollen legs from time to time. I can go into a session with that old memory of the deadness in my legs, a feeling that the ataxia has increased and I am not as steady, despite the fact that I walk every day, and am on an exercise bike two or three times a week. After a session, within 24 hours, the wonderful pins and needles are back, my feet feel more flexible, more alive. My ataxia settles down, I feel more like agreeing to go for a walk, and (to top it off), my performance on the bike improves dramatically.

This post is part of a chapter from my book:
Taking Charge; a journey of recovery

7 comments:

  1. am a TM patient since 1month. i can walk by a stand but i can hardly lift my legs. there is weakness n numbness in my legs. can accupuncture help me?

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    1. Hi. We are all different, and our TM has differing causes. I cannot advise you to seek alternative medical care; I can only reflect on my own experience. I believe it helped me by restoring some feeling I had lost, by improving my energy, and by giving me hope. Latterly, it has helped me with chronic pain on the right side of my chest, but even after 4 years continues to increase the feeling in my feet and legs each time I have a treatment. Has it been helpful over the long term (4 years)? Well, you never know where you would have got to without it. But for me, I feel it has continued to be very helpful.

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  2. Hi Graham,
    Thank you so much for sharing your experience.
    I am an acupuncturist in Vancouver, BC, Canada, and am currently treating a patient with ATM.
    In addition to acupuncture, I am considering putting the patient on a Chinese herbal formula, and wondered if your son had you take anything of that sort.
    Thanks in advance,
    Brent Ackerman
    www.blacksheepacupuncture.ca

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    1. Hi Brent. My son has tried to get me to take tablets of the order of 6 at a time 3-4 times day. I am personally and professionally averse to using medication, so I have resisted. Being a western trained doctor, I still do need a bit of western style evidence. I believe there is strong evidence emerging for acupuncture, but am not convinced about little black pills that all look the same.

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  3. Sometimes it all depends upon the experience of the therapists because they know the best that what is where and how can this be overcome as neck pain Canberra is one of the problem in which the problem is still unknown.

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  4. Hello, thanks fro sharing your frightening experience as there are some days in our life when we cannot do much but to wait and see. My uncle also had some sort of same problem and doctors just lost their hope but then Physiotherapy North Ryde gave us a hope and he really recovered from his nightmare. I always guide the people about the person who helped him on his feet.

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