Reinventing Emma by Emma Gee Read Free Book Online

‘client-centred’ practice and communicating with patients as equals. Most of the doctors in this room either don’t want to be bogged down with that seemingly simple stuff, or they missed the lecture on client-centredness.
    They seem to barely notice I am there. I am sitting in front of the enormous image of my own brain, and the deadly AVM inside it, while they talk to each other, almost excitedly, about the severity of the problem. It’s good to have Dad by my side, a doctor who can speak their language. He is also my advocate and is as horrified as I am by the real implications of the image on the wall. Thankfully, he is able to challenge this room full of experts to explain themselves clearly.
    The first possibility, we hear, is just to leave the AVM alone and monitor it. But the angiogram showed it had recently leaked and they agree there is a high chance that it will bleed again in the near future. In fact, there’s a 50 per cent chance of it bleeding again over the next 30 years. They all decide, without even a glance in my direction, that leaving it is not an option.
    The neuro-radiologist discusses embolising the AVM. This involves injecting superglue into it to block the vessels. But in my case, the AVM has too many vessels connected to the surrounding vital brain tissue. So there is the danger of ‘collateral damage’ – other blood vessels and surrounding brain tissue being destroyed. I watch the neuro-radiologist as he sits in the corner with a remote, flipping through the various slides of the different cross-sections of my brain, seemingly removed from the discussion. It is clear he doesn’t think embolisation is an option. He doesn’t want to treat me.
    Then it is the radiotherapist’s turn. He says my AVM can be treated with radiotherapy as a day procedure. This sounds less invasive, but leaves a high risk that it could bleed again in the near future. He warns me that the surrounding brain could also be impacted by this treatment. Apparently my AVM is sandwiched between cranial nerve V, responsible for facial sensation, and nerve V11, enabling facial movement.
    â€œYou could lose the ability to blink or sense when you have foreign material, like dirt in your eyes. Also, visual problems such as corneal ulcers and double vision could result,” he says grimly. “If certain nerves were damaged it could result in facial pain,” he adds. I force myself to nod. I appreciate his honesty. I have no idea that all the things he talks about, and more, are ahead of me.
    Then it is the turn of the neurosurgeons. Mr McMahon explains that he feels surgery is the best option, adding that I would have to spend time in rehab first, as they wouldn’t want to operate on something that had freshly bled. Also my chances of a quick recovery would be increased if I could learn to walk independently again. Using his fingers to trace lines on my head, he quickly shows what they’d do if I went ahead with the surgery. “We’d make an incision behind your right ear, then remove part of your skull bone to get to the AVM. Then we’d just clip it, remove it, replace the bone and then stitch you all up again.”
    It sounds simple. I feel hopeful. This relief is short-lived when the other more experienced neurosurgeon interrupts, saying, “I wouldn’t touch her with a ten-foot pole!”
    My heart sinks. Apparently, the chance of me dying during the operation is too high. I glance at Dad desperately to see if I’ve heard the words correctly. Dad puts his hand on my right knee. My advocate has surrendered. I thought listening to such disagreement between experts in the field would give me clarity. But I am feeling more frightened and more confused.
    At the same time I am boiling with anger and frustration. I had been sitting for what seems like hours in this dark room with a group of experts talking about my brain in an abstract scientific fashion.