28 June, 2010

Good news, bad news.

Today was the day I meet with my neurosurgeon.  Not the one that operated on my back originally, but nonetheless a consultant and therefore good enough for me.

Knowing that the fraternity has rules I asked “Should I call you Mr?”  He smiled as the MRI and CT images loaded on his computer monitors and replied “Dave was good enough for my mother, so it’s good enough for you.”

Dave it is.

We chatted about things in general, then about the things that mattered.  He showed me the MRI, scrolling back and forth to satisfy himself the titanium had fully bonded. The plates, the screws, the 2 delicate cages that held a donor wedge of bone in place where a disc once was.  Fusion was total and couldn’t be undone.  But he wasn’t happy.  The work Emir, my original neurosurgeon, did was first class.  The problem was not of the surgery but of my body continuing to break down.  The arthritic spine was evident, almost glowing white hot on where vertebrae rubbed on vertebrae.  However we all knew that and it wasn’t a surprise.

The surprise is that the canal which the spinal cord passes through is too narrow, and becoming even more narrow.  There is no room for spinal fluid to surround the vital bundle of nerves.  It’s like having a delicate bundle of fibre optic cables being crushed in a vice from all sides.  Without intervention the sheath that protects the bundle will rupture and the core of nerves will become damaged without prospect of repair.

Fortunately the structure is stable for the moment.  It will become less stable over time, but Dave is a conservative and won’t operate unless the vertebra above my fused vertebrae become unstable.  I like his thinking; the more of the spine that is fused, the greater the pressure on the spine overall as the forces cannot be dissipated.  That’s what discs are for, to act as shock absorbers and dissipate much of the forces on the spinal column.

In one particular type of arthritis, which mainly affects young men, the vertebrae slowly fuse together until there is no movement of the spine.  Ironically this fusion makes the spine weaker, not stronger, because forces on it cannot be distributed properly.  Also the arthritis makes the bone more brittle, so fractures are far more likely to happen.  It’s been known by many names, bamboo back being one of the most common because the spinal column looks like bamboo.  These days ankylosing spondylitis (AS) is its common name.  A progressive degenerative disease related to rheumatoid arthritis (RA) - the main type of arthritis I have - and like RA, AS is a auto-immune disease.  That is, the person’s own immune system doesn’t recognise the body’s own tissue and attacks it.  In AS, the immune system attacks the fluid in the degenerating discs and the facets of the vertebra.  In RA, the immune system also attacks the bone in the synovial fluid in, for example, the fingers.  The fluid acts as lubricant and prevents bone rubbing on bone.  In my case, the poly arthritic nature of my RA affects my fingers, wrists, and my spine.  Probably my ankles too, but I don’t worry so much about them, particularly my right ankle as I can’t feel it, and my lower right leg and foot are supported by a high tech device that stops my foot from drooping and the ankle from twisting.  On flat, solid, grippy surfaces I can walk without the aid of my walking stick.  It’s an amazing feeling to be able to do that, I can’t begin to describe how much better I feel within myself to walk without aid or fear.

So, where to now?  Pain management still goes on, as does hydrotherapy and physiotherapy and, of course, consultations and prescriptions.  More importantly, Dave has referred me on to a neurologist.  The point being?  There are other issues besides walking strangely or pain.  Somewhere higher up, near or in the thoracic vertebrae, is causing a few problems.  It’s not painful, unlike my lumbar, but it needs to be looked at.  If surgery can be avoided, I don’t mind.  If not, then I know I can trust Dave to make the right decisions after another consultation.  Of course it’s great not being in a position where a decision must be made now, that my spinal column is so unstable that intervention must happen now.  I’ve been through that before, the emergency, the temporary stabilisation, the operation, and the ongoing rehabilitation.  It’s not something I would wish on anyone.

For now I’m not sure how to feel about the idea of my spine slowly crushing my spinal cord.  It’s not a surprise to me in a strange sort of way.  I’ve already started on my “bucket list.”  Today I opened a special savings account with the goal of saving enough money to travel to Beijing then travel to catch one of the Trans-Siberian trains through Novosibirsk, onto Moscow, stay a few days, then catch the Red Arrow to St Petersburg.  Why?  To do it before I can’t.

I’m not saying that being a paraplegic would stop me from doing what I want to do, but I want to be able to do it while my legs have some function left.  In some ways when my back broke, it may have been better to have lost my legs (which I did until the operation) and not have the debilitating chronic pain that I have now - a case of being able to fool most people much of the time and a few people none of the time.  Those who have met me probably think I’m a pain in the arse, or perhaps a little too jolly.  Those who know me understand that if I stopped and thought even a little about how much it hurts physically and emotionally, I would seize up like Tin Man in the rain.

There is another driving force.  Every day I’m at Royal Perth Hospital, Shenton Park Campus where rehabilitation is the focus, I see young and old who have lost limbs, who are para/quadriplegic and are rebuilding their lives.  Some are at the beginning of their journey, some are nearing the point in their lives where they are truly independent for the first time in their life.

If the prospect of death focuses the mind, then the prospect of losing independence toughens the resolve.  My resolve has never been tougher.  This is a war I cannot win, but I can, and will, win many battles along the way.

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