Austen, Kent

I was a busy school teacher, not long in a new job, marking test papers one evening in May 2014, when my left arm grew weak. I was sat down at home and put it down to muscle tiredness so simply took myself off to bed. The following morning I could not use my left hand at all to button a shirt for work, so walked myself to the nearest A&E. I think the receptionist had a good idea of my symptoms, because within minutes I had my first ever brain scan and was lying on a hospital trolley to be told that I had suffered a stroke. The words were unimaginable to me; I was a keen runner and cyclist with good diet and tea-total lifestyle. Utter shock and disbelief rushed at me in equal measure as I considered letting everyone down at my school that day.

The doctors began studying my right parietal intracerebral haemorrhage, but it was only after being ambulanced to King’s College in London that the cavernoma was suspected. I had never heard of this word before, like most sufferers. There were a few days of debating, then discharge home, before an MRI in July showed a cavernoma to be the cause. Situated in an eloquent location of the brain (pre-central gurus adjacent to motor hand area) this explained my first symptoms of left arm weakness. 2 seizures in hospital saw the prescription of Keppra, again a drug I had never heard of but one I have been taking ever since. I recovered after weeks of rolling playdough and learning how to place a cup on a target with my left hand, then let go again. Falling just before the summer break, I was back at work the next September, business as usual with all the strains of 30 seven year olds in a classroom, slightly adjusted in confidence but with every good intention of getting on with my life again.

The year went well until 10th July 2015 when I experienced a slight loss of sensation over a few days but in my left leg this time , that caused me to slightly lack balance on my bike ride to work but was nothing like my first bleed the year before. So here I was back in hospital, faced again with the return of my symptomatic cavernoma.

Two years ago, the thought of brain surgery would make me panic, and the location of my cavernoma in an eloquent brain area made the decision harder, but I decided to face the storm instead of living life fearing its return. Therefore, after much discussion with my fantastic consultant and team at King’s, (2 bleeds within 18 months made the decision for surgery easier because risk of further bleeds earlier on in the life of a symptomatic cavernoma is significant) I made up my mind for surgical excision. There followed other scans for intra-operative guidance, one being passing small electric charges through my brain to make my left side move so that the surgeon could plan his road map in and out, then on the 9th November I had attempted removal surgery. However, after approximately 6 hours, the surgery was unsuccessful due to position and potential effect of paralysis upon my left side, so I was awoken with this news and left feeling very confused. However, I had faced a fear and done all I could to live life without a cavernoma.

So where does this leave me today? I must recommend Caver Buddies; I made a wonderful friend in Scotland (via the Facebook group) who explained the process of surgery to me and really helped me through my questions over the phone. I have also attended some amazing lectures at the annual forum in London, meeting new members of the Alliance and sharing my story. As I write, I am back at work and have lived symptom free for over a year now. Also, having run marathons previously, the doctors advised me not to try one just yet (avoid dehydration) but I trained for a half marathon in October this year and ran my fastest time ever! Well, they did advise me to get on with my life! I believe that running is so good for getting my blood pumping around my brain, giving me an excuse to really work my left-sided limbs and has helped me forget about the cavernoma for a while
So the dilemma remains – do you wait for another bleed and never do things you love doing, allowing the cavernoma to define you, or take the doctor’s advice and grab each day, live it healthily and to the full because the cavernoma may never reveal itself again? I have chosen the latter, but would not have got to this point without my friends and advisors in the Cavernoma Alliance, for whom I and my family are so grateful. One day, I will run a marathon for them.

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