My name is Yvonne from Manchester United Kingdom. I finally came across your page, by searching on the worldwide websites for my disease. There seems to be nothing in the Uk, so I would like to tell my story to you.
I am 49years of age and 3 years ago I was diagnosed with an Arachnoid Cyst underneath the brain and lying on the optic nerve. For nearly ten years I had suffered with headaches and frequent trips to my doctor, resulted in his diagnosis, of Migraine, Depression.
Three years ago I was suffering really badly and made visits to my Doctor, who insisted I was depressed and stressed, a couple of trips to the A&E at the hospital, who inferred, I may be showing signs of having a stroke.
It wasn't until I was found wandering on the street, by my sister, not knowing who I was or what day it was, that finally my sister gave my doctor an ultimatum, "give her a brain scan, or I will hold you personally responsible for whatever happens to her"
Next day I had a CT scan, they found the cyst, size of an egg, had an operation week later to drain, it. Surgeon came to see me and said, "yes we have got rid of it, should have no further problems, it seems you were born with it but has only just come to light.
Within, 18months, I was back in the hospital for Brain Surgery again to drain it,was told before I had the op that they were going to insert an Ommaya Reservoir, because they could not get all of the casing of the cyst away, because of where it was lying.
I now have this Ommaya Reservoir, underneath the brain and the rubber end protrudes out of the side of my head. As the Doctor, said "you wont see a lot of people walking round Sainsburys shopping with one of them" funny!!! I don't think so.
Four months ago I had it aspirated and never had i experienced such paIn. The Surgeon, wont agree to putting a shunt in. Everyday I suffer headaches, sharp pains, no sleep, dizziness and awful fatigue.
I have to say, that I am clueless on this condition and all the medical jargon that goes with it and don't really know what I should be doing, or discussing with my Doctor
I have to say that your page has been really helpful to me and has given me a starting point of how to go about dealing with my illness, and exploring the consequences of it more. Thanks!!!