The extract shown below is the comment I wrote on the Arachnoid Cyst Awareness Petition to the World Health Organisation asking for Arachnoid Cysts to be recognised as a genuine and serious painful medical condition, which can, and often does, lead to permanent disablement. The petition was presented to them in April of this year; as far as I am aware, there has been no response from the World Health Organisation yet. But I suppose that, like test results, these things take time.
Name: Chris Rugg on Jan 27, 2010
Location: Taunton, Somerset, UK
Comments: I had a shunt for an arachnoid cyst on my left frontal lobe in 1987. Now 23 years on I still have a cyst on my left frontal lobe. Neurologists do not seem to believe that the pain, tiredness and general malaise which often affect me, can be caused by an arachnoid cyst. I am also an epileptic and even though this is controlled I am convinced that the root cause is the cyst. It is time that the medical professions of all countries recognised the arachnoid cyst for what it is. A serious illness!
If you would care to listen to the letter the ACA sent to the WHO please click on the link below.
A large number of those with arachnoid cysts also have associated conditions, syndromes or illnesses such as epilepsy, hydrocephalus (water on the brain), chronic fatigue syndrome, ataxia (gradual loss of coordination affecting the ability to walk), disturbed sense of balance……….. I could go on and on, but I do find lists somewhat boring. Suffice it to say that the cyst does not come alone.
In the time since my second AC was finally diagnosed I have been given many ‘reassurances’ by neurologists here are just three; ‘it’s only a cyst’, ‘It’s all in your mind’, ‘I know that! I’ve seen the MRI scans’, and last but not least ‘It’s OK your cyst is benign.’ How can something which is getting larger every day, taking space which is meant for my brain be regarded as nonthreatening, I was told this at the same time as I was told my cyst is inoperable.
I have three reasons for writing this short blog:
i. To try and raise awareness of Arachnoid Cysts.
ii. To emphasise how little the medical profession know (or want to know) about them.
iii. And last but by no means least, to congratulate and thank Dia DiCristino for founding Arachnoid Cyst Awareness and keeping it going over the years. And for making the first ACA Conference on 6th November in Philadelphia a reality, I will be watching on Skype. Get well soon Dia.