An online friend sent me a link to this Guardian article, which raises the issue of Stroke misdiagnosis in children and young people. The article tells the story of 13 year-old Isaac, whose stroke was caused by a hole in his heart, and whose condition was incorrectly diagnosed following a CT scan. This is exactly what happened to me five years ago. Stroke misdiagnosis among “non-typical” patients (those who are young, apparently healthy, and without ‘usual’ risk factors) is a surprisingly common and serious issue that urgently needs addressing. Here’s what happened in my own case.
As I was whisked away to hospital on that cold February morning in 2010, I recall trying my hardest to ask the ambulance paramedic “have I had a stroke?” To me this seemed the only logical explanation for the sudden horrific event which had left me half paralysed and barely able to speak. At the hospital, I was seen by an eminent Edinburgh neurologist, who breezed in with his satchel. He looked at my notes, conducted a brief examination, and sent me away for a CT scan. A CT scan is a notoriously blunt instrument in stroke diagnosis, and mine showed no abnormalities. “Good news” said the neurologist, “you haven’t had a stroke.”
“Then what on earth has happened to me?”
“Do you have a stressful job?”
“Yes I do.”
“Would you say you were suffering from stress at work?”
“It seems your body has decided to convert that psychological stress into a physical reaction.”
I was absolutely mystified. It was certainly true that I was at rock bottom mentally, and that my condition had been exacerbated by work-related stress, but was I really so damned mad that my brain had made my body just give up? What on earth could this mean? The neurologist wrote up some notes. I received no medication or treatment of any kind. I was taken to a neurology ward, rather than the stroke unit, and manouevred into a bed.
“What’s going to happen to me?” I asked the ward sister.
“We’ll have you out of here very soon” she said.
This was early in the morning, and that first whole day and night on the ward were truly the worst hours I’ve ever spent. I recall feeling extremely peculiar – my whole body fizzed with a painful and horrible paresthesia (pins and needles). I had an appalling headache, was experiencing visual disturbances, and could hardly hear or speak. The world kept going in and out of focus, and I had no movement at all down the left side of my body. My face drooped, the left side of my mouth flopped uselessly, and I just slumped over when I tried to sit. I was brought some food, which I managed to eat with my right hand. I called the nurse when I needed a pee. Getting me to the toilet was a strange and difficult palaver – one of the many things me and my newly disabled body were going to have to get used to. Poor, ashen-looking Tom was told to go away and find me some clothes suitable for a hospital stay. Left alone, I was completely and utterly terrified. I cried with fear. Was I completely mad? What was happening to my body? What on earth was going on with me?
The following morning, I was greeted by a pleasant medical student. She very carefully conducted a full neurological examination. She took her time and was extremely thorough. My dead left leg became the focus of her particular attention. She lightly and repeatedly hit it with one of those small hammers which, until that moment, I had never really seen in use outside of a child’s play medical set. Though the leg was completely dead to me – I was unable to move it at all – it seemed that its reflexes had become extremely intense. When she hit it, it juddered and shook wildly. The student compared my left leg to my right. While the right leg displayed a brief and ‘normal’ reflex reaction, the left reacted with uncontrollable spasticity. The student disappeared, and returned some moments later with one of the ward’s junior neurologists. She demonstrated the different reactions of my two legs to the hammer. There was a hushed and animated discussion.
Then things started happening very quickly. A wheelchair was found, and the medical student personally whizzed me off to the MRI scanner. I bypassed a waiting room full of people and was lifted into the weird tumble-dryer, where they looked at my brain. When I emerged, I could tell from the faces of the scanner operative and the medical student that something was really very wrong. The student pushed me down another corridor, to the cardio-vascular unit, where I had a bubble test. The MRI had shown that two rogue blood clots had found their way into my brain and destroyed a significant portion of its right hemisphere, while the bubble test revealed the hole in my heart through which those clots had passed. As I had assumed in the ambulance, as I had felt the whole of the previous day, I had indeed had a stroke. The medical student had suspected this from my leg’s intense, uncontrolled reactions to her hammer. This is known as clonus, and it is a positive sign of serious neurological conditions, such as stroke and MS.
Back on the neurology ward, things were very different. I was swiftly injected with heparin, and carefully examined by several other neurologists, including the eminent one who had initially misdiagnosed me. I became very aware that the attitudes of a small number of staff – most notably the ward sister – had markedly changed toward me. She was super-attentive, friendly, sympathetic. It slowly dawned on me that on the previous day she had regarded me as some sort of odd, malingering hysteric, but that now I was a different sort of a patient – a patient with a serious brain injury, a patient who had been disabled by a stroke.
The neurologist who first examined me had looked at my medical records, seen the barrage of psychiatrists and psychologists and GPs reports, read about my psychotic episodes and recently-diagnosed mood disorder, and decided that I was one of those highly-strung, over-achieving types – the types who, when heading off to their stressful jobs on a monday morning, find that their brains and bodies have just about had enough, and fall over, paralysed. Indeed, I was perhaps the type of woman who studies suggest are most prone to suffer from Conversion Disorder – what used to be called hysteria – but that was not why I had ended up in hospital. I was there because I’d had a stroke. I had been misdiagnosed by an eminent neurologist (who based his decision on years of experience and his own assumptions) and correctly diagnosed by a junior medical student (who had little experience, but who was intrigued by medical fact).
I hold no grudge at all against the eminent neurologist. After his initial mistake, I felt he consistently treated me as a human equal, and, in subsequent decisions about my care, I always felt he had my back. He was also quick to admit his error – indeed, he held it up as an example. A few days after my stroke he took me to a meeting of around 50 Scottish neurologists, where I was questioned about my background and my symptoms, and where his own misdiagnosis was revealed. I was taken out of the room before they discussed how they had actually got to the bottom of the matter, but I saw the medical student was there in the room at this meeting. Her name, I recall, was Laura. I hope they gave her a hearty round of applause.
I spent one day as a person who had been incorrectly diagnosed with Conversion Disorder. It was the worst day of my life. I really can’t stress the importance of my stroke’s correct diagnosis strongly enough. It allowed me to receive the right treatment, as well as to understand what was really happening to me, but this did not happen until around 36 hours had passed since my first arrival at hospital. Did my brain suffer further damage in that interim? Would my recovery have been swifter, or more complete, had I been given immediate thrombolysis or other clot-busting medication? No one can say. I think I’ve really done pretty well with recovery so far, but as the Guardian article makes clear, new diagnostic guidelines for stroke in children and young people are most definitely, and most urgently, needed.
Thanks to Joan Keating for sending me the link to the Guardian article.