I am the mother of Jacob, four years old. When he was 9 months old, his older brother dropped him on his head. The resulting CT scan showed an arachnoid cyst. We were
told it wasn't a big deal and that we should monitor it with yearly CT scans. That was while were in the military and stationed overseas.
For Some reason the military loves to give vaccinations to the kids and fathers, which messes up their sperm, and then causes them to be carriers for Arachnoid Cysts. I am sure I can accuse until the cows come home but it's very strange that the 100+ people I have spoken with to date have a spouse, a father or themselves are in the military. If not their father then their grandfathers. I wish I could pull an Erin Brockovitch to prove that vaccines cause these things but naturally since I have an AC myself it's kind of hard to prove ~Catherine
When we got back to the states, the Army doctor wouldn't refer us for follow up CT scans.
We are now civilians.
Jacob fell from the top bunk of his bunkbed last month. He was fine, but I couldn't shake the deep-gut, foreboding 'mommy-feeling' that something was wrong.
I was able to get a CT scan and I fully expected ("Disney-like" hope I guess) that the cyst would have disappeared.
Adults, too, often have the Disney hope that their cysts will go away or that their cysts aren't casuing them to go nuts or even have problems however what ends up happening is that when you go for years on end without treatment the "asymptoms" that you could live with 2 or 3 years ago have now become permanent symptoms that give you that not so fresh feeling when you wake up from not getting any sleep last night. Squeeky wheel gets the grease so if you don't bitch, piss and moan to get these taken care of guess what? They will find a way to take care of you!
We learned today that the cyst has grown and has spread it's fingers (?) into his actual brain.
This makes me want to vomit. When I read this kind of shit not only has my heart broken but it really makes me say "Get out that vicious attorney you love to hate and sue the fuck out of the doctors that told you this was nothing to worry about." But then I realize they were military and you can't go against the US Military.
I am heartsick. I don't know what all of this means. My baby has changed. He was happy and always smiling. Now he is a dark, deep little boy. He hits his baby brother and complains of pain - head pain, leg pain, neck pain, you name it, he feels it. Please help me help him.
I wish I had ten million dollars. I am doing the best I can with the limited capabilities that I have to either 1. Communicate with you what you need to do and 2. Raise the funds I need to make this little brain research project I am working on take off. I don't care if I have to sell porn on the internet or even stand on the side of the road with a sign saying "5 out of 1000 people autopsied each year have Arachnoid Cysts. Wouldn't you like to know how those people suffered?"
For now I am doing the best I can by updating the website and getting it together so that we can build our little community. I'm so sick, literally, that it takes all I have in a normal day just to work and then I don't have much of a life after that.
Not to mention that it's not fair for me to drag my NEW boyfriend into this shit when I hear from other caregivers that they are sick and tired of their spouses that suffer (as if they have a choice in the matter... like I chose to be white...) and that if they want to pull the chain on their own lives it's "good riddence". At least he doesn't care if I have to use a walker every now and again (I don't use it all the time because I have been humiliated. You should try an experiment and walk down the street with a walker sometime to see how people quickly look away versus being oogled all the time for being a hot chick.).
No I am none too happy with how we are treated by most ignorant doctors, caregivers that don't know how to provide support, family members who don't take precious few minutes from their busy schedules to try to understand what the hell is going on AND SOCIETY. The mommies of the babies are the ones I need help from because it's things like "I will take Tanner and give him a massage when he's having a rough day" because the AC mixed with Chari and Syrinxes in his spine are reaking havoc on his 2 year old body.
I hate getting letters like "The teacher locked my son in a closet because she couldn't deal with his behavior." Those fuckers like that need to be sued. We are so discriminated against that the list continues on a daily basis so I find amusement in the "asymptoms" that are casuing me to have scolosis, pain and no nerves left to put up with the smallest infraction of bullshit that has no bearing on my life including paying bills, keeping up with the Jonesing Joneses or being so broke I can't even pay attention.
In other words... I am doing the best I can with what I've got and if I have to cuss, not pay my bills so that I can do something that will help us more or even traveling to other places to meet other AC people then I am doing the best I can. Hopefully I can write a book because if 5 out of 1000 people suffer from this then there might be a way Paris Hilton can have one of these so that we get all that funding we need to educate doctors and get more money to the neurosurgeons that HAVE FIGURED OUT ARACHNOID CYSTS CAUSE PROBLEMS THAT LAST YOUR LIFETIME.
Maybe the book with be a #1 best seller, maybe that porn site will take off so that there are some bucks behind what I am doing (if you have a problem with me taking off my clothes then you really don't understand what it means for an AC person to be a streaker... even at 2 nor do you know what it's like to truely suffer and at this point in my life I DON'T FUCKING CARE WHAT OTHER PEOPLE THINK ABOUT ME... I just don't want the babies to suffer like I have my whole life) and maybe my photos will one day hang in a museum but this is going to take a lot of time... time I don't always have because I am asleep from all the drugs I am on or out there pretending to live a "normal" life.
I need all the help I can get... Now I just need to figure out how to ask for it.