A 3cm brainstem cavernoma announced itself with a bleed in 1987. At that time I was a student at the University of California. After the bleed, I remember going to a lecture and seeing on my peripheral gaze a light flickering (I had experienced strange ocular disturbances prior to my bleed.) Following the talk, I went and examined the light. The flickering was caused by a faulty fluorescent tube. There is a moral to this story I thought.
The bleed left me with four symptoms. Currently, they are:
• Holmes tremor affecting my right side
• Dysarthria – slurred speech (sound like a drunk)
• Diplopia – double vision on periphery
• Gait ataxia – imbalance when walking
At diagnosis my initial question to the neurosurgeon was “can my cavernoma be removed”? The surgeon replied that the lesion could be resected observing: “either you take the risk of paralysis or death on the operating table or spread the risk of decline over the years”. For better or worse, I chose the latter.
Having taught in America until 2002, I returned to England with declining health and wondered what to do with the rest of my life. I moved to Dorset to be near my parents and being frustrated by the lack of information about cavernoma established Cavernoma Alliance UK (CAUK). In our first year, we had a total of thirty-six members. Now we are “fortunate” that we get 5 to 6 members each week. Bittersweet.
Thanks to a Big Lottery award in 2013, CAUK now has two wonderful part-time staff plus myself. But with the growth of the charity, many members contribute to our funds by taking part in the most incredible activities. We increasingly rely on members as the Big Lottery awarded is tapering down.
Through all of this, I have been lucky enough to be advised by a board of trustees, especially Professor David C S White, Chair, who all give of their time voluntarily. The trustees and staff are the real backbone of the charity.
And as I go through my life, I must never lose sight of what it is that CAUK strives for: support, information, education and research of this “common condition” – cavernoma.