Today I contacted the neurosurgeons at the NIH in hopes of getting some kind of reaction. Sometimes I feel like if I don't have the support I need, like several people doing this, it's not going to be done. I've been advocating for people with Arachnoid Cysts since 1999 on Yahoo! groups, originally, but decided that I needed to get the message out, that these growths needed more exposure so I started arachnoidcysts.org.
I have spoken with over 2K people around the world that just can't get treatment.
It's been a rough couple of years. For starters my mind wasn't clear. By the time I was 40 the pressure on my brain was 226 when they did the spinal tap. When you think of BP, 120 is normal, and by the time it's 226 they have surgery on the heart. I was 40, had 14 rare diseases, picked up MS at 32, as well as those other diseases which I DO NOT WANT TO HAPPEN TO ANYONE WITH THIS.
For some of us, as early as the age of 3, the pressure is so high that children express, "Mommy, I want to kill myself." They beat their heads on the wall or floor, trying to make it better, when too many doctors take the "wait and see" approach when the pressure should not be allowed to do what it has done.
We have our own specific set of mental disorders that are purely Arachnoid Cyst. For starters, there are people that hear things in their heads, like voices or music or a whooshing noise (which is too much CSF pressure). These things are like having antennas in our brains, holes in our souls (they can fix holes in other people's hearts but the brain...), so that we are more perceptive to what is going on around us.
For starters the "voices", or as one teen called them "demons", are thoughts and feelings from other people that surround us. We hear the negative things and feel them about ourselves, since our families don't attempt to understand. Some of our families and siblings think vile thoughts and are jealous of the attention you get over the attention that they get. This is typically because they just think about this being a cyst, not a free floating cyst that can cause more damage than just a mass tumor that sits where it should.
Like I said, these things are worse than 'real, classified' brain tumors.
The problems continue.