In 1975 I had meningitis, the diagnosis was made at the Cambridge military hospital in Aldershot. At the same time the doctor in question heard a noise. Thinking it was my heart I was sent to the Brompton, finding the heart not to be at fault I was then sent to the Maudsley, who diagnosed an AVM of the vein of Galen. It was at this point that I was sent across to the National. Things went well and my condition was controlled naturally. My life changed as the hormones imbalanced with puberty, it was at this point that our hand was forced into the dramatic step of fitting a shunt system. After a period of illness and several shunt revisions, I once again stabilised.
My life continued relatively uneventfully until, at the age of 25 I started to deteriorate. I was then introduced to Dr Taylor; my first embolisation took place in 1998, the results of which were amazing.
I Have Seen As A Child
Waking up after the procedure was quite an experience, a perceptual change had occurred. The way that I perceived sound had altered: before sound was fragmented (like a pie chart) and flat, now it is three-dimensional; before I had noises inside my head, which had now gone. I now needed more sound and had filled the gap with what I can only describe as electrical noise (when a TV searches for a signal).
Vision had altered with heightened sensitivity to the magenta end of the spectrum. Edge definition had increased giving me a fuller and clearer image. The two senses described above had a profound influence on distance judgement. Since leaving hospital I have become very aware of the weight of my head, it is apparent that the left side is heavier, the side of the valve. The valve itself is still working though with less fluid and more slowly. I have always been conscious of the CSF flow through this shunt and it has never really bothered me, however with the reduced pressure the shunt fills with fluid and remains so, giving me the sensation of an ear full of water. This sensation can last for hours, only easing when all channels open at once, my artificial drain and what I must presume is the natural route. The event is not comfortable when combined with a noticeable change in pressure. The pressure change is only apparent when I am in an upright position.
Another of my changes is the way that I experience motion, travelling in a car was always such a violent experience whereas now it is smoother. Headaches I thought would be a problem, however this appears not to be the case. I have a certain number of uncomfortable feelings going on inside my head, but nothing on the scale that I used to experience. The feelings themselves consist mainly of specific pressure points, the size of one maybe two fingertips pushing outwards. These have occurred above the eyes and both old and current shunt sites; they also seem to occur in a large number of different places across the back of my skull. The altered blood flow had given me fluctuating blood pressure, this extra pressure led to a number of nosebleeds, these have since calmed down.
Trusting what is in essence a new body has been hard. My sense of balance has improved to the extent that I am now able to stand on one leg. This skill was achieved with a certain amount of trepidation as I still have a tremor down the right side of my body.
This has been written by a young adult with a vein of Galen malformation, considered too dangerous to treat in the past…..
Dr Wendy Taylor