As I walked into the neurologist's office, I thought I knew what was coming. I didn't. I'm a medical student and had looked up all of my symptoms; everything seemed to point to carpal-tunnel syndrome - a trapped nerve in my wrist. I sat down and, from the look on my doctor's face, began to feel uneasy. He said that something unexpected had shown up on my MRI scan. The pins and needles, wasting and weakness that I had been experiencing in my left hand for nearly a year were, in fact, caused by a condition that I had never heard of called Chiari malformation.
This meant that I had been born with my cerebellum protruding through the base of my skull. The extra tissue had altered the pressure and flow of spinal fluid, causing it to get "dumped" into the middle of my spinal cord, a condition called syringomyelia, which was progressive. I tried desperately to remember some anatomy so I could ask a sensible question, but just went to pieces. Finally, the doctor told me that there was a treatment, and I held my breath. I could have surgery, which could halt all progression of symptoms, but carried risks of further nerve damage, brain damage or paralysis.
As part of our medical training, we learn how to break bad news. The gist of it is to give information in small pieces rather than all in one go, to allow patients to take in what they're being told, and ask questions as they think of them. I remember realising that this technique had just been used on me. I wished that I'd had lessons in how to receive bad news, because I didn't know what to think. Relief at the possibility of treatment; fear at the thought of brain surgery; shock at the discovery that I'd been born with this.
The appointment had been at the National Hospital for Neurology & Neurosurgery in London. It was the Easter holidays, and on the bus home I realised that, in a cruel twist, most of my holiday was due to be spent revising neurology for the next term's exams.
There was really no decision to be made about the operation, especially once I had Googled "Chiari", and read the all the horror stories on the internet. If left untreated, the nerves of my spinal cord would continue to be damaged, which could cause pins and needles, problems walking, even blindness, all of which would get worse. I knew the risks of the operation were worth the peace of mind of knowing that symptoms wouldn't progress. I saw the neurosurgeon, who told me what was involved. "Basically, your brain is too big for your head," he said. "The operation has the effect of enlarging the space for the brain in the back of the head."
The procedure is called foramen magnum decompression. They remove a crescent- shaped piece of bone from the very back of the skull, as well as the back of the top two vertebrae, and then graft a piece of nylon into the membrane surrounding the back of the brain. Generally, my prospects were good because of my age and general good health. But I would be out of action for at least two months, and might not feel back to normal for six to 12 months. We agreed that it would be best to have the operation at the beginning of the summer holidays, in the hope that I would be well enough to start back at university for the beginning of the next year.
Being a pre-clinical medical student, I hadn't spent much time in hospital before, so had no idea how one works. Every person I saw that first day started with, "So, you're a medical student...". There were pros and cons to this. It perhaps made people less prone to patronise me, and more ready to explain things. On the other hand, I found it difficult to ask questions because I thought I should already know the answer.
Walking to the operating theatre at 6am with a nurse and my mum, I just wanted to get it over with. When I woke up, it felt like my head was made of lead. I had to lie completely flat for 48 hours to try to stop the graft leaking spinal fluid, before it healed over. I began to gradually raise the head of my bed over the next few days, but sitting up even for half an hour left me so tired that I needed an hour-long nap afterwards. By the sixth day, I could get out of bed and walk, so I was sent home.
That first stay in hospital was a real learning curve for me. One thing that surprised me was how little you see of doctors on the ward, and when they come on their rounds, it is odd to be talked about in the third person. Often, I would only recognise one of the four or five doctors, so it was odd to be talked about by what felt like strangers. I'll be in a similar position to them next year, trailing around after a consultant, and at least I know now that the easiest way to make someone feel better about you being there is eye contact and a smile.
I knew recovery would be a long process, but after a few weeks I still didn't seem to be getting better, and my neck started to hurt constantly, even with strong painkillers. I had barely any appetite as I felt constantly sick. A few days before I was due to have my six-week check up, I was talking to my mum. Suddenly, my mouth felt numb and odd, and I asked her, "Doth my thpeech thound thlurred?". She called an ambulance, and by the time it arrived, my right arm was numb. In the ambulance, they asked me who the Prime Minister was. It was the oddest sensation because I knew, of course, but couldn't think of his name. The paramedic thought I was having a mini-stroke and they took me to the local hospital in Hereford.
By the time I got to A&E, I could barely tell them my name. I was there for two days while they found me a bed in a neurological unit, and all I remember is being in the worst pain of my life, people shining light in my eyes, being rude to everyone, and feeling constantly thirsty. I couldn't make sense of anything. Eventually, they found me a bed in the neurocritical care unit at the Queen Elizabeth Hospital, Birmingham. They diagnosed a pseudomeningocoele. The graft had sprung a leak and the spinal fluid in my neck was putting so much pressure on my brain that it couldn't function properly.
The registrar had me lie on my side and inserted a needle into the back of my neck and drew out the excess fluid. Almost immediately, the pain went, I could move my neck again, and soon had my speech back. After another operation to fix the graft, I felt stronger. A new year at university was starting in a few weeks and I was determined not to miss it, so I pushed myself to sleep less, get stronger, walk further.
So, what have I learnt? More than I could ever learn in a lecture room. It's strange to realise that you are entering into a profession about which, in practical terms, you really know nothing. There were so many things I learnt in hospital that otherwise might have taken years to grasp. Every medical student would benefit from a stay in hospital, to see things from the other side.
I did get back to university on time, and now, 10 months on, I'm back to normal, apart from the occasional stiff neck and a very impressive scar.
Chiari malformation: facts and figures
* Chiari malformation, also known as hindbrain herniation, is a congenital condition thought to affect around 1 in 10,000 people. It is characterised by downward displacement of the cerebellum through the foramen magnum - the hole at the base of the skull.
* Chiari malformation may present symptoms at any age, but is commonly diagnosed in adolescence and young adulthood.
* It can only be accurately diagnosed by an MRI scan, and many people with Chiari are asymptomatic. Little is known about the cause.
* Symptoms can include headaches at the back of the skull, pain when coughing and sneezing, and blurred vision.
* In some cases, Chiari can lead to syringomyelia, a cyst developing in the spinal cord.
* Syringomyelia is a condition closely associated with Chiari that can lead to loss of muscle strength, balance problems, and loss of temperature and pain sensations.
* The only treatment for Chiari is foramen magnum decompression, an attempt to enlarge the space available for the displaced cerebellum.Reuse content