I do not feel good!
It was three weeks before Christmas last year when I remember having that instinctive feeling that something wasn't quite right. Seeing as it was the run up to Christmas, I put my severe tiredness, head aches and muscle cramping down to the stress of work, festive shopping and the aftermath of the odd over indulgence of mince pies. I had suffered with pretty intense migraines since I was 15 so when I had a couple in a row I wasn't too alarmed and just spent the weekend in bed to rest up. The following Tuesday I remember waking up feeling extremely nauseous and had a terrible throbbing ache at the back of my head. I got to work feeling exhausted and particularly weak. By late morning I was convinced I was either coming down with the flu or it was the start of a third migraine. By the afternoon my health took a drastic turn.
It was quite clear that I did not have the flu and that this was not your average migraine. Within an hour I had almost completely lost my sight in my left eye, my hands and legs had gone completely numb. Within minutes my tounge was numb, I had pins and needles in my feet and all over my face and chest, I was dribbling slightly, my head felt like it was going to explode and I could not string a single sentence together. Luckily, after a short time my boss called for paramedics and notified my mum that I needed to go to hospital. I was rushed into the high risk area of A&E at UCL hospital in London, which is very luckily opposite where I worked. I could hardly see the paramedics or make any sense of what was going on.
Am I having a stroke?
I was taken to have a CT scan as doctors were convinced I was having a mild stroke. Shortly after a doctor came in to tell me that they had sent my scan images to a neurosurgeon in Australia as they had found something abnormal that may be causing this onset of symptoms. Dazed and tired, I waited anxiously with my boyfriend, mum and sister Hattie. The lovely doctor came back to ask if my mum had packed me an over night bag. She then took a seat (the dreaded, I'm going to sit down because I am telling you some bad news kind of seat) and asked if we had ever heard of Arnold Chiari Malformation? Our jaws dropped. Yes, we knew all too well about the condition. My sister had been diagnosed in 2010 and had already undergone a decompression operation for the illness. I already knew from this point that my life would never be the same again. We sat for what seemed like hours in total shock.
A confusing conclusion
The next day I was sent for an MRI of my head and the top of my spine. I got my results on that day and went straight to see a consultant specialising in neurology. She tested my reflexes, coordination, eye sight and asked me lots of questions about my health history. She had come to the conclusion that my symptoms where not related to my brainstem defect and suggested that I suffered with chronic migraines and fatigue. I felt very confused by this sudden change in opinion and wasn't really sure how to take it as my MRI showed a clear defect in my brainstem along with a white area in my spinal cord which she explained was a condition called Syringomyelia. The white area was a Syrinx - which means cyst in the cervical cord.
Simply having a wonderful Christmas time
Before we knew it Christmas had arrived and I was home. With it being my favourite time of year, I used every bit of physical and emotional strength I had to join in with the festive celebrations. I was feeling dizzy almost everyday, had a constant head ache and every time I stood up without taking it slowly I would almost faint. I spent a lot of time sitting down and found myself extremely lethargic after just a few sips of alcohol. I managed to stay positive and determined to get better, especially for Hattie who had been so brave for so many years.
Second consultant appointment
The new year had arrived and I was on my way to see the top neurologist at UCL. He patiently listened to my long and tiresome list of symptoms and gave me the same examination I had previously undergone. He then confirmed that my symptoms where that of Arnold Chiari Malformation type 1 and that my pins and needles, numbness and fainting episodes where more than likely caused by my syrinx. I felt a huge sense of relief that he had no doubt I needed treatment and has arranged for me to see the neurosurgeon at the end of this month. I feel anxious about that however I am really looking forward to getting some of my life back!
I will be sure to give an update of my experience with the surgeon.
If anyone reading this has any questions or any comments they would like to make please feel free to leave a comment or ask any questions on our twitter page @ChiariSisters