Category Archives: Medical History

Storytelling – Part Three.

A month before I turned 22, I woke up one morning in pain. I had never had back pain before beyond sore muscles and stiffness. This was something else; searing pain in my back, buttock, and leg that made it difficult to move, to think, to not scream every second. I knew exactly what it was, thanks to my exposure to my family’s issues. A CT confirmed that I had bulging discs at L4/L5 and L5/S1. MRIs over the last four and a half years have documented the worsening of the discs, as they lost fluid and height and revealed tears. I was diagnosed with Degenerative Disc Disease, a catch-all description of sub-par discs that is diagnosed in most people as they get older, but usually in individuals more than twice my age. I still get asked constantly by medical professionals if an injury or accident precipitated my problems, but have discovered through my own investigations that research suggests genetics plays a larger part in disc degeneration. That is certainly true in my case.

It would also appear I have an autoimmune disease; probably limited systemic sclerosis (also known as CREST syndrome or scleroderma), or mixed connective tissue disease, which can include symptoms of lupus, rheumatoid arthritis, and systemic sclerosis. My brother and mother likely have the same condition (it can be difficult to test for these things conclusively). There’s not really any way to tell if the autoimmune disease caused the back problems or they just coexist, and it probably doesn’t matter that much anyway, although some days I desperately want a concrete diagnosis to give the people who treat me like a hypochondriac.

I have spent the past four and a half years on Panadeine, then Panadeine Forte, then Tramadol, then buprenorphine patches, then back to Tramadol, then Endone (from 5mg up to 20mg). I have had 17 injections of steroids and local anaesthetic into my discs, nerve roots, and facet joints. In June 2012, aged 25, I had my first surgery; plastic butterfly-shaped Impala implants which were inserted between my vertebrae at two levels to act as car-jacks and stop the bones impacting on each other when my discs fail in their job completely. It is unlikely to be my last surgery. On the day of the surgery, from the time the orderlies picked me up to when I was wheeled back into my room, six different medical personnel commented on how young I was to be having spinal surgery; two more have done so since. I know. Stop reminding me. The surgery helped with the disc pain, but I am still having facet joint and nerve issues.

This is my story. Written down all together, it seems a little ‘woe is me, my life is awful’, which it isn’t. I have a pretty great life in and around the pain; sometimes it’s been terrible, but that’s true for everyone. I’ve had several stretches of up to three months at a time pain-free, thanks to surgery and injections (and once gonging, but that’s a story for another time). I have a wonderful team consisting of a GP, neurosurgeon, and pain management specialist. I am not describing my history in a bid for pity, or with the intention of inciting a ‘my-pain-is-worse-than-your-pain’ war. I’m telling you this to say; this is how I got where I am. This is the lens through which I view the world. This set of circumstances dictates where I am coming from and how I deal with things, and what I will attempt and what I will tolerate and for what I advocate.

This is me, and now that you know me, we can begin.

Storytelling – Part Two.

I have one sibling; a brother eight years my senior. At 29, he hurt his back too, after breaking his leg badly while playing sport and being on crutches for several months. He had always been huge and strong and probably suffered as much mentally, being suddenly crippled, as he did physically. His back injury was at the same level of his spine as my mother’s, but for myself I hadn’t yet made the connection. He was active, often lifting heavy things and doing physically demanding tasks that could account for his injury.

He is now 34, and still in pain despite surgery to correct a compression fracture (where one of the bones in your spine breaks under pressure because the discs aren’t cushioning the bones the way they should) and a partial discectomy (where they shave off the part of the disc that is bulging out where it shouldn’t). I remember blinding terror during the time he was having surgery, an ordinarily stressful situation compounded by leftover neurosis from my childhood anxiety for my mother.

Storytelling – Part One.

It’s hard to know where to begin this. It seems like it’s important to get right. The stories you tell about yourself create your reality. We know memory is incredibly fallible and untrustworthy, but without it we have no way to determine who we are, where we’ve come from. So this may not be the truth, as it played out to an objective observer, but this is the beginning of the story as I remember it.

My mother was a sewing machinist (seamstress, before job descriptions became politically correct). The year I was ten, she hurt her back, badly. She was in hospital for seven months altogether, with a stint in the middle at home on complete bed-rest. I remember being constantly terrified that my mother was going to die. I remember the nurses giving me lots of biscuits because they felt sorry that a ten year old spent all her free time in hospital waiting rooms. I remember being ushered out a lot, and people whispering, and the only occasion on which I have ever seen my father cry. I remember running to my mother’s bedside when she came out of a prolonged spinal surgery, and hugging her, because I was so glad she wasn’t dead, and hurting her horribly in the process by jarring her, and feeling terrible.

My mother had a fragmented disc at L5/S1 (your lower back, just above your pelvis). The disc had lost fluid, and dried out, and become hard, and then shattered. Parts of the disc pierced her sciatic nerve (down the back of your leg running through your butt cheek). By the time she had the surgery, she had permanent nerve damage and the nerves which controlled her bladder and bowel were dying. She got better, mostly; she regained most of her mobility and found ways of managing her pain (which persists, some 16 years later), and she became my mother again. Her injury was attributed to her work, which involved long hours sitting hunched over a sewing machine.

That seemed like the end of it. But that was actually the beginning of my story. A deep-seated fear of hospitals and doctors. Debilitating terror inextricably linked with spinal issues.