Close to my eighteenth birthday I ordered a new motorbike helmet, and on arrival from the courier went out for a test ride that ended rather badly indeed.

Driving on a country road I came up to two cars going slowly, one with a trailer hooked up and going slower than me so it looked good for a quick over-take.

Little did I know that the trailer’s lights weren’t working, and that the car was both slowing but also indicating to turn right. The car turned into me as I was about to pass, clipping me and throwing me through the air with enough force that on hitting the ground my left arm whipped back so violently it actually detached the nerves from my spinal cord. Until that point in my life I was left-handed, but in that split-second I’d lost the use of the arm for good.

Various other alarming events occurred, including my helmet filling up with blood from fractures to both jaws. People at the scene had no choice but to take it off me. My jaws were wired together for 8 weeks and I can tell you I’ll never forget the distinct aroma of a hot, roast-beef milkshake they specially made for me in the blender. Bless ‘em. Never ate it of course!

Brachial plexus lesion

There are two main causes of injury to the brachial plexus, which is a network of nerves leading from the spine to the shoulder, arm through to the hand.

• During birth a baby may stretch the arm out and up with enough force to cause damage to the nerves. Usually the injury is mild and babies have a very good chance of complete recovery.
• The other cause is often more severe and caused by trauma of some kind, often from motor vehicle accidents. The reaction from hospital doctors at the Dunedin Public hospital was in my case “another motorbike one”. Bike and motorbike riders are very susceptible to this injury as the violent forces involved during an accident can throw the arm during impact with enough force to tear the nerves from the spinal cord.

Because the injury involves a network of nerves, brachial plexus lesions can range in severity. My injury was the worst, with complete nerve breakage, resulting in complete paralysis and no ability to move the arm other than the ability to shrug the shoulder (using a separate group of nerves and muscles).

The nerves do regrow to some extent and in my case about two years later I was walking to school and suddenly gained sensation, somehow immediately knowing it was working again – a very strange feeling! I had regained ‘enough nerves’ to have the bicep muscle functioning. My understanding is that surgical intervention is possible and used in less mild severities of brachial plexus lesion.

My treatment

was a month of admission to hospital. I had other injuries also healing; severe upper and lower jaw fractures, which were wired shut together to aid healing. My knee was badly cut diagonally from upper-left to lower-right so I needed help from orderlies to shower and even get around. Wheelchairs don’t work very well with one-hand!
I had daily physio, swims in the heated pool, massage, nerve electrical stimulation and acupuncture. I carried on as an outpatient for many months afterwards. Occupational Therapists taught me many skills to help live life one-handed and the amount of care and attention I received from the Hospital Allied Health services was beyond outstanding. I tried to pay them back in a small way by letting the student Doctors come in and diagnose my condition. (At this stage it was impossible to see any obvious injury.) This was a somewhat painful event as it involved multiple stabs with a pin in my good arm, then bad arm, for them to be satisfied with their diagnosis. I wonder what Dr. House would have done!

I was surprised to discover even though I had complete paralysis I still had feeling and sensations. Sensation from the shoulder to bicep was hyper-sensitive and very ticklish. I could feel heat and cold, with the sensation tapering off and almost disappearing at the hand itself. (overall arm sensations tapered off from around 100% normal feelings at the top of shoulder, to 30% at the bicep, 5% forearm and barely-detectable feelings on the hand – which led to several burn injuries throughout the years)

Over time my arm started to lose all muscle definition. The arm didn’t just dangle, instead it decided to end up in a twisted fashion with the hand almost directly over my groin. Somewhat annoying unintentionally punching yourself in the tender bits!

Some 19 years later I had the dangling floppy old arm amputated.

Even with a disability such as mine, losing the use of an arm – and it was the dominant (hand I wrote with), it was not the end of the world by any means. Not to belittle those who have a fracture or break which in it’s own is more disabling. I actually did fracture the ‘paralysed’ elbow during a drunken xmas party and having a paralysed arm in a cast and sling was bloody annoying!

If you are the victim of brachial plexus injury please remain confident. Trust me, you’ll become so clever with workarounds, you’ll become more body conscious than ever before and be able to balance things in ways you’ll never thought remotely possible! I work in a typical office building with swipe card scanners in the lifts and I can happily juggle a cup of coffee with a muffin in bag pinched between my fingers and using the outside of the hand to push the security card against the scanner, all in one skilled executed maneuver (if I do say so myself!)

If you are the sufferer of a brachial plexus lesion, or family of, I want you to take away a very simple thing from this site: Put yourself first, ask questions of your healthcare professionals and treat your pain as seriously as you treat your disability. Pain has as much potential to disable you as your injury.

If you are the victim of a brachial plexus lesion resulting in long-term paralysis (remember many injuries do heal depending on severity of injury) you would most likely be involved with a broad range of health-care specialists including Doctors, Physiotherapists and Occupational Therapists (OT). OTs were useful in my case because I had to learn to do everything with the right-hand only, and seeing as I was until the injury left-handed, this obviously presented an extra set of challenges. Occupational Therapists taught me how to be self-sufficient at home and also gave me some useful kitchen gadgets.

Respect pain and respect treatments.

I waited too long, it is clear to me now without a shadow of a doubt. If I can ‘gift’ my hindsight to you in this regard then that my friend is indeed, my pleasure.

Spending a month in hospital for the various bits & bobs to heal was a strange experience but any young lad isn’t going to pass an opportunity to flirt with a nurse, although the reality for me was a crush on my physio who had a silly sense of humour like me, and was the best part of my day apart from visits by family & friends. One particularly memorable visit was from a close friend Blair, on visiting for the first time, boldly strides in wearing his full bike leathers and announces in his typically bellowing fashion to my shared room of 3 others plus nurses attending to me, “So Robbie, you’ll be learning to wank with the other hand now? Oh well it’ll feel like someone else I suppose”

The driver of the car with the dodgy trailer was brave enough to come and visit me and I pretty much adopted an instant shit-happens attitude to the whole thing so never held a grudge at all.

I was told by Doctors there was a slim chance of nerve regrowth ‘repairing’ the connections, that if anything happened it would occur within 2 years or not at all. Because of this I decided against amputation (later deciding to get the chop some 18years after).

Phantom Pain.

• 60-80% of amputees experience phantom pain in the amputated limb

During my recovery I experienced phantom pains, something my Doctors were unable to explain except in the vaguest terms. I pestered them enough to be allowed access to titles within their library. The most useful find was a crusty old book about WW1 soldiers and the nasty experiences resulting from the thousands of battlefield amputations. Soldiers being soldiers, downplayed things and I wasn’t sure if the intensity of my phantom pain was normal at all.

For me the pain centered very much on the wrist area, around the base of the thumb and forefinger. I felt crushing burning sensations, with random electrical blips and all sorts of aches and pains. One of the harder things for Mum was after I finally was able to return home, she’d hear me bashing the wall late at night in frustration, not being able to sleep and wanting to replace one pain with another.

Early treatments for me were two-fold, attending an outpatient pain clinic where mainly cognitive behaviour therapies were taught, and trials of a drug used to treat Epilepsy called Epilem.

Epilem failed spectacularly, doing nothing to relieve the incredible pain, often resulting in me punching the wall at night to try and distract my brain with something different. especially after realising the disasterous results of having a beer or two after taking the yucky Epilem. The outpatient clinic was a pretty amazing experience and helped me cope and move on with my life.

About ten years later the levels had dropped quite a bit, but it still had enough effect on quality of life to prompt a random visit to a physio at a public hospital in Oxford where I was living at the time. By sheer chance she had recently treated another chap with the same injury and had been told of a drug Endep (Amitriptyline) that was an old-school anti-depressant but also had good results on those with phantom pain. I’m still taking it to this day and I’d be quite close to feeling that the phantom pains have gone.

Phantom pain does lessen in time. (Dramatically so for me thankfully).

My belief is the phantom pains are related to the last nerve ‘memory’ experienced. It has been reported that motorbike accident victims like me (brachial plexus lesion is the medical term for the injury) often experience a crushing burning sensation in the hand of the affected arm. One can imagine gripping the handlebars rather intently in the moments before impact!

I was lucky enough to have a small amount of nerve regrowth some two years later, which resulted in the bicep muscle becoming the only working part of my leftarm. I did also have normal sensation of touch to the elbow.

When the regrowth happened the site of my phantom pain instantly moved from my hand to the elbow area, and remained there until the amputation 16 years later. At that stage it was much less a hassle, having instead been replaced by chronic shoulder pain that was equally bothersome and becamemuch worse than the phantom pain was.

When you are the victim of a massive trauma, pain becomes almost part of you during the early periods of healing and it can be weeks or months before you begin to feel normal. You might suddenly realise that sensation still hasn’t disappeared yet.

Some describe phantom pain as tickles and aches, others much worse. The early reports of phantom pains were from soldiers who had a natural tendency to downplay things. I personally only really felt understood by the Doctor at my outpatient clinic. After my arm was amputated just below the shoulder in November 2008 I asked the resident doctor attending at the removal of my stitches (he didn’t know me from a bar of soap) about phantom pain. He looked up at me and said “some people get it, some don’t”. He must of been very busy with his clipboard as he turned and walked away after that. Nice one mate.

Phantom pain is very confronting. For most it’s occurring in a limb that isn’t even there. How do you tell someone that you’re in a bit of bother because it feels like someone has you left hand in a vise when you don’t even have one.

Phantom pain is a bloody stupid name as it already implies it’s not real pain.

Chronic pain experiences.

Slowly over the years I had a new type of pain begin to develop in the neck and left shoulder. Having the arm dangling loose without the use of the shoulder muscle to support it, caused this constant drag to slowly develop into an almost ever present and chronic ache in my left shoulder and upper back. At first I got a lot of relief from heat-rubs, menthol creams and the like. Later this was replaced by wheatbags and more often than not I had a wheatbag on the shoulder keeping the aches at bay. I could open my top-drawer at work and have a half-dozen different creams,lotions,rubs and assorted packs of panadol.

Amputation

Things changed for the worse and I soon began popping pain pills which had very little relief on the pain, which developed into what felt was part chronic and also part phantom. During the waves of pain that would sweep over the region it could reach a peak that I could only treat with a sharp intake of breath, held until the wave had passed. I decided to amputate the arm and went through the public system (12months passed) eventually ending up in the Royal Brisbane hospital, grinning like a Cheshire cat and looking forward to freedom as an amputee.

At first it was amazing to have this freedom. No more anchor or floppy wasted-away arm to get in the way in bed, on the train, at work….etc. Of course I get my fair share of curious looks but I was pretty immune to that as the arm prior to amputation was practically wasted-away through dis-use it was just skin and bone from the elbow down.

Probably a month later and the wheatbag started getting used again and over the next half-year I slowly increased it’s use. A change in role at work also coincided with my partner Sharina and I deciding to build a house.

A struggle with pain and a solution?

Fast forward until February 2010. site works starting that month, and a particularly busy time at work had me suffering through a horrible amount of pain which by then was treated with codeine based paracetamols, with such frequency at one stage I started a spreadsheet to track my pill intake to avoid complications. I was scared and worried that I might be unable to work, not a pleasant thought all – especially during a house build.

A visit to my G.P. who surprised me by listening to my complaints and cheekily replying “yes. you have chronic pain.” We decided to try a sustained release painkiller called Zydol (Tramadol HCI) at 100MG and taken 1-2 times daily.

It has been good so far and reminded me what it was like to be truly comfortable. I remember seeing a movie with Sharina and realising what it was like to enjoy a movie without interruptions by pain.

Hasn’t been all smooth sailing however and Sharina mentioned I could spend almost the whole night twitching when asleep, enough to make her get up and sleep on the couch. I have since decided to only take these during the day and only where I feel it’s needed. My tummy doesn’t like the sustained-release effect of constant very mild nausea, and neither do I !

Important: Please speak to your Doctor about your symptoms. Consider a multi-disciplinary approach to your treatment. Try to contact others who have been through similar experiences.

Chronic Pain Treatment

March 2010.

After a good chat with my G.P about recent increases in issues we decided to trial a sustained-release painkiller called Zydol (Tramadol). I was not actually aware such a product existed, hence I’d not asked for it in 19years of suffering. It has so far been a great therapy but of course side-effects do exist. So far we’ve noticed if taken at night I will then have extreme night ‘tremors’ to the point of having Sharina having to get up and sleep in another room. As my pain is much less severe at night due to art-therapy I have since trialled not taking it during the evening.

[My own experience with this medication is obviously unique to me. You must talk to your own Dr about your experience's.]

December 2010

I became tolerant of Zydol within a couple of months and now don’t even notice it kicking in, unless it has been a number of days between doses. I have reverted to TENs therapy, finding great results from a new machine costing $129. Frustratingly it broke down after a couple of months & I’ll be making a warranty claim shortly.

[Update May 2011: After having the device break again I have given up on TENs, leaving me with just wheatbags and pain medication, which is working out to be effective about 50% of the time]

You’d think 20 years experience of chronic pain would mean things are fairly stable. I can tell you thats bullshit and I spent too long thinking I was bullet-proof.

There is no shame in being changed by things out of your control. That’s not giving us a get-out-of-jail card and we should continually strive to improve.

Pain – thoughts