They may be rare, but they still hurt.

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.

# 157

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.

Arachnoid Cyst Petition

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.

 

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About wurzelmeone

I'm a mental health advocate, sometime writer, dreamer and according to some friends a part-time alchemist!
This entry was posted in Arachnoid Cysts, Depression, Disablement, Epilepsy, Fatigue, Hope, Lack of research, Living, Mental Health, MRI Scans the lighter side, Stigma, Uncategorized, Walking and tagged , , , , . Bookmark the permalink.

5 Responses to They may be rare, but they still hurt.

  1. Hi Chris, I always remembered your post in the petition, and came across it the other day when I printed out all 177 pages of the 1200 signatures. I am having the signatures on display at the conference. Thank you so much for your support! We have a top neurosurgeon coming to speak, and that alone to me means, change is on the way. Another neurosurgeon from the Netherlands wants to get involved with ACA Org as well, and this to me is fantastic! Things are happening, progress is slowly happening, and it is because of people like you that more and more are educated each day on the realities of arachnoid cysts! Thank you so much Chris, and I will see you via webcam at the conference.

    • wurzelmeone says:

      Hi Dia, thank you for your comments, I am very pleased to hear that more neurosurgeons are taking notice, a lot of the credit for that is yours. I will look forward to the ‘Walk or Wheel’ in the UK, just let me know when and where, and I’ll be there. I am sure that all will go well on Saturday.

  2. keatsbabe says:

    Hope the webcam link to the conference went well Chris. It is great that less known and less well understood conditions get some publicity. Doctors definitely don’t know it all, even though some think they do!

    • wurzelmeone says:

      It went OK thanks Suzie, though I did keep losing contact and having to re-connect the tinycam connection, but I heard a lot through webstream, as you say a lot of doctors/consultants need to listen and learn a lot more. Will tell you more on Thursday.

  3. Tremendous! This particular is all I can think pertaining to a blog post like this excellent. This kind of is literally a notably explanatory article post on the blog. You just need to know a lot about this amazing

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