Reinventing Emma (5 page)

Chapter 6

A Diagnosis at Last

As it happened there wasn't a tumour, but the doctors were closing in on the real cause. The weeks of false leads and agonising waiting for a reason were about to end. On the 15th of April, almost three weeks after arriving at the Alfred, I was sent for an angiogram. This is a complicated and invasive procedure but at this stage the doctors were trying anything and everything to find some organic reason for my symptoms.

A cerebral angiogram is a diagnostic test that produces an image of the arteries in the brain. A long thin catheter is threaded through a blood vessel, usually in the upper thigh, all the way up to the head. Once the catheter is in place, the radiologist injects a special dye into the arteries of the brain. Then the image of the brain is taken.

I was told the likelihood of having a stroke during or after the procedure was high, so I had to stay awake. This certainly didn't help my growing anxiety.

“Take this little pill, Sweetie, it'll calm those nerves,” the nurse said, handing me a glass of water and a Valium.

Desperate to rid myself of the enormous butterflies colliding in my belly, I grabbed and swallowed the tablet. But no medication would calm me enough or distract my attention from what followed.

I was lying on a plinth-like bench in the middle of a big, darkly lit room. A thin white hospital gown pretended to cover my freezing body. Two masked people hovered over me. “We've numbed the area so you shouldn't feel us inserting the catheter,” one of the white coats said before shoving a tube inside my leg. While setting up the equipment he explained, “We will fire the dye into different arteries in your brain and then we'll leave the room and take photos of what we see … Just need you to stay nice and still.” This he added before walking out of my sight. I heard his footsteps fading and a door closing.

“No one's going to stay here with me?” Tears welled. The nurse rubbed my right hand reassuringly. “We can't stay with you because of the radiation, but will be just behind that glass window over there.” She pointed to the other side of the room.

Replacing her company with another white hospital blanket, she left me alone with my peaking anxiety.
This is torture. I can't handle this.
I lay there listening to the sound of my thumping heart, feeling sandwiched between the hard metal surface I'm lying on and my escalating fear. The eerie silence was soon broken by a crackling noise and a male voice.

“Are you OK Emma? We're all behind the glass window on your right but we'll be talking to you all the time on this microphone.”

Trying to turn towards the voice I realise my neck is restrained so instead I whimper an unconvincing ‘yep'.

Before I know it, my anxiety engulfs me.

“I'm scared,” I call out. I am crying now but I don't care.

“You're OK. Hopefully it won't take too long … now just stay still Emma.” He seemed to ignore my fear.

If I had thought all the other procedures I'd been through, from MRIs to nerve-conduction tests, were bad, what followed for the next few hours was off the scale. The agonising process was prolonged each time by a staff member intermittently re-entering the room, repositioning the machine and shooting more dye into my brain. Then they exited the room to take photos behind the window. They'd instruct me over the loudspeaker to, “Breathe … you're doing well,” and then, “Now hold still … hold, hold, hold” when taking the images.

Although I managed to stay physically very still, my mind raced. Any chance of human comfort was behind the glass of a distant room. As the dye was released into my arteries to allow them to glimpse the mysteries of the brain the sensations were excruciating. One minute I felt like someone was pouring turps down my throat, the next my head felt like it was on fire.

In the recovery room, a young male doctor removed the catheter and blood spurted everywhere. He applied pressure to the area to stop the bleeding while calling to a nearby nurse, “She won't stop bleeding!” The nurse came over to see if she could assist but accidentally pulled the wrong curtain. As my bed was conveniently positioned under the television, the other patients' eyes were looking in my direction and my leaking body was exposed to the whole room.
Great!
Fifty minutes later they wheeled me, exposed and vulnerable, back to my room. Nauseous from the long procedure and seeing stars, having been stripped of any form of comfort for the entire procedure, I was relieved to see my close family and friends waiting in my room.

The morning after the angiogram another doctor entered my room, introducing himself with a comforting handshake. “Mr John McMahon. I'm a neurosurgeon here at the Alfred.” He sat on the visitor chair next to my bed. After a brief chat about the weather, we skipped the small talk. “So I looked at the angiogram, which shows that you have an arteriovenous malformation [AVM], or knot of blood vessels, in your brainstem,” he said.

A diagnosis? At last?

“Is that bad … What is it?” I sat upright.

“An AVM is a congenital condition, so you're born with it. It's a bit like a birthmark but in the brain. It's comprised of a tangle of blood vessels. In most cases these untangle as you develop but yours have remained knotted.” He demonstrated the tangle of blood vessels by clasping his hands together, interlacing his fingers and twisting his wrists in opposite directions, then went on to explain that the angiogram also showed that it had bled once recently and once in the past. “The dehydration associated with your climb up Mt Kinabalu may have precipitated the recent bleed and onset of symptoms, resulting in your left-sided paralysis,” he said.

Apparently the earlier MRI scans failed to pick up the AVM because it was in the brainstem, which is surrounded by bone. The devastating news was that my AVM was like a time bomb, likely to burst at any moment, and needed to be removed.

“We'll chat about this with your parents, Emma. Don't worry. You're in good hands here.” He put his hand on my right shoulder reassuringly and smiled compassionately before turning around and leaving my room.

I felt overwhelmed, but also relieved that there was a physiological reason to explain everything.
I did have something physically wrong with me.
All the support and love I had received from family and friends now seemed deserved. I had been under immense strain, feeling terribly guilty when no one could work out what was wrong with me. At the same time I felt completely exhausted, depleted by weeks of worrying – worn down and no longer able to convince them that there was an organic reason for my predicament.

After feeling handballed between so many different specialists who seemed to struggle with juggling their intellect and bedside manner, meeting Mr McMahon renewed my faith in the medical profession. He was extremely intelligent and had been honest but also tactful in relaying difficult news. I was thankful that it was he who finally told me what was wrong. But I was left with a zillion thoughts and questions I hadn't asked.
This AVM thing has always been in my head. It's bled. How much? It's going to explode. When? How will they remove it? Is it dangerous?

After the AVM was found, I was moved to the neurology ward. They wheeled me to a room that I was to share with a lady who had had a stroke. She spoke little English, and continually stripped and made her bed, and thought I was a bank teller. She would wake up in the middle of the night screaming gibberish.

Another patient did laps of the ward, clutching a handbag closely and wearing a permanent grin, as if she'd just been told she'd won a million dollars. She seemed to suffer from short-term memory loss. She introduced herself three times in the first ten minutes.

In my role as a neuro OT I had often worked with patients like this, but never imagined I would one day be there among them. I felt frightened and alone. I remembered then that the last patient I'd had before I was suddenly admitted also had an AVM. She had suffered a stroke as a result. At the time I had only really been focusing on her stroke. Now I could only think about my AVM. The AVM in my head.

Chapter 7

More to Prove

The next logical stop was the serious task of discussing what to do about the AVM, but it seemed I still had more to prove. Unbelievably, despite now having a physical diagnosis, the next day the previously scheduled psychiatric assessment still went ahead. I understood that the doctor was being holistic in his approach, but I did find this hard to comprehend.
Surely I had enough to contend with?
I feared that any resistance to being assessed would only nourish their doubts about me. So I went to my scheduled appointment without any argument.

The room is small, dark and musty. A naked cork pin-board hangs crookedly on the far wall. The senior psychiatrist sits opposite me in a white coat, his name badge a constant reminder of his status. He has coarse grey hair and his skin is wrinkled like an acorn. He leans back in the soft armchair in a relaxed manner and crosses his right leg over his left knee in an open, figure-four position. I do feel intimidated but don't want to let his confident manner get to me.
Be brave, you have nothing to hide.

A younger colleague wearing a light-blue polo shirt sits upright on a wooden chair in the corner of the tiny room, quietly observing. There seems to be a real hierarchy here.

The psychiatrist begins scanning my sexual history, asking if I had ever been abused as a child. Despite determining that I had nothing but an amazing childhood, later in the interview he reverts to this topic. He leans forward so his forearms are resting on his thighs and whispers slowly and clearly, “Do you orgasm a lot?” and “Do you like it hard?”

My eyes widen in disbelief. I gulp.
Is he serious?
These are just two of the questions posed by him in this tortuous assessment. Inwardly I am furious, but I don't want his inappropriate questions to intimidate me. His eyes penetrate as my mind searches for the right response.
How does he want me to reply? What is the right answer?

After that interrogation the best he could come up with was that I was anxious and depressed, and he prescribed me anti-depressants. His written diagnosis admitted there was some organic cause for my illness but that it was exacerbated by psychological factors. He thought that I might be reacting psychologically to my twin sister's and mother's serious illnesses a few years earlier, speculating that I might be suffering from ‘survivor guilt'. He added ‘possible conversion disorder' to my medical file.

I couldn't believe he would sit there with a young woman going through the trauma of a real-life time bomb in the brain and just narrowly look for a psychological answer. I was shocked that he would offer a diagnosis of depression without considering
why
I might be depressed. My experience in that consultation only made me more sceptical about those ‘caring' for me. I felt that my responses had to be tailored to what he wanted to hear. He had failed to even try to understand my true state of mind. If I had already been anxious and depressed, it became much worse after this insensitive consultation, even though I never resorted to his prescribed anti-depressants.

It was a relief when a couple of weeks later I finally got an appointment at the AVM clinic. With a serious condition like the one I now knew I had, it is standard medical practice to get all the different specialists together in a room to discuss treatment options. I went along with Dad to the William Buckland Centre at the Alfred. By this time I had heard many different opinions on what could be done about the AVM. I knew this was my chance to consolidate all the different techniques and make a decision.

I enter the dark and sombre meeting room. An image of my brain is enlarged on the wall and a group of white-coated doctors sit around a massive circular wooden table. I soon learn that there are two neurosurgeons, one neuro-radiologist and one radiotherapist. I sit nervously next to my dad. Thankfully I'm sandwiched between him and Mr John McMahon, two people I trust. The other neurosurgeon, dressed in operating scrubs, perches on a chair next to Dad, committing neither to sitting nor standing, holding my bulging medical file in one hand, his mobile in the other.

In turn each professional gives his opinion regarding treating the monster featured in the image behind me, the convoluted knot of blood vessels that is my AVM. I listen attentively, squinting and straining to catch their mumbling words, searching desperately for any optimistic word like ‘hope' or ‘recovery'. I have brought a dictaphone in my bag, but I don't dare ask to record the discussion. I am already intimidated enough by them. When I studied OT we had been taught the importance of ‘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.

“You 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. They seem oblivious that the patient they are speaking or arguing about is in the same room. It's my life and my death that they are discussing. Worse, they still haven't come up with a definite solution. My AVM and I now seem dismissed and they can turn their attention to the next case. The sound of rustling papers, clicking pens and the dragging of chairs tell me the meeting is over as far as they are concerned. A waft of cold air enters the room as one doctor leaves.

But I'm not ready to leave yet. My AVM is still ticking away. This is my only chance to get at least some useful information from them. I quickly blurt out some questions I'd scribbled down earlier.

“Can I fly?”

“Can I drink alcohol?”

“How long would it be before I return to work and running?”

I feel stupid asking these now, after the seriousness of what I just heard. Desperate, I do anyway. It is pitch dark in the room. Thankfully, I can't see their rolling eyes or smirking expressions, but I soon know I've lost their attention. After asking a couple of questions my voice fades as I realise no one is listening. The harsh fluoro lights flick on. They quickly leave the room. I limp after them, feeling physically and emotionally helpless. Stranded. Desolate.

I guess I expected to leave with a solution of sorts and a treatment date. Instead, I seem to have ignited a lot of medical argument. No one is willing to take the risk to separate me from the ticking time bomb in my head.

Speechless, Dad and I enter the lift. There is nothing to say, and my thoughts are spiralling downwards. Mr McMahon catches the doors as they are closing and squeezes inside the metal box to join us. The three of us stand in awkward silence. I can tell Mr McMahon is in deep thought. My AVM ticks, Dad's frustration brews and McMahon's conscience surfaces. As we all exit the lift, Mr McMahon suddenly turns around to face us as if he's made a decision.

He says, “I am going to swallow my pride and suggest that you, Emma, seek the expertise of my very experienced teacher and colleague in Sydney, Professor Michael Morgan.” He seems relieved at his escaping words. He adds that although he would learn so much by operating on me, he knows that if I were his own daughter he'd let Professor Morgan operate. My respect for him, already high, is now off the scale. Even though I have no definite plan, at least I am left with some possibility.