I found the most disgusting thing imaginable today. It's an article on one of the first children documented to have an arachnoid cyst. It was born vaginally the year after I had surgery in 1990. The cyst was over 1 inch all the way around.
I can't tell you what it means to me to see that this child was born, now that I was well-informed of the consequences, with a cyst that compressed it's brain and they just didn't know what to do back then.
I had been to 9 neurosurgeons by then. 10 actually. My mom and sister were both doing chemo and I felt that I didn't deserve to have surgery since they were doing chemo. And I was having so many problems I didn't know what to do. I couldn't think. Some of the pressure was taken off by the first aspiration that was done to me, but after that the pressure was getting greater because the juncture of where my cyst was is in the center of my brain.
It's not that it happened in 1991 or is it? That's when I was pissed off more than I ever had been after waking up from my worst suicide attempt. The ones before that I didn't really know how to go about it but I tried several things. And I know I shouldn't give ideas but once I took a whole bottle of aspirin when I was 13. When I was 16 my dad had finally decided we weren't a part of his life (no Christmas, birthdays, since my mom had cancer and we chose her over him) so I put on an Armani shirt that he had blamed me for bleaching, and took a razor blade and cut the back of my head open several times. I thought if I could just get some of the pressure off IT WOULD STOP. My mom screamed at me because we were going to see a doctor soon and it just wasn't soon enough.
Then I saw something on trepenation and that just scared me too much but I should have tried that before I tried to kill myself. I just figured since I'd had sex and lived as tragically as I had there was nothing worth it. Nobody was listening to me.
My mom screamed at me that if she had to live with Ovarian Cancer I had to live with my brain tumor. Nobody understands the nightmares these things become as you age. And how, since we have holes on our souls, there are things we forget but the things we remember are remembered photographically.
I found maybe 6 articles on Arachnoid Cysts when I was 19, which is when I started researching to find something, anything to make myself better, or find a doctor that could really do something.
The second doctor I saw after seeing a regular neurosurgeon in Kentucky was at the Mayo Clinic. That's where I learned that the term "patient" means that you slowly wait for 8 hours to see a doctor. They haven't done much for us. In all the phone calls I've taken more people have been denied than treated that I know of. They wanted to do a stereotactic biopsy, which was drilling through my brain. My mother said "You're not drilling through her brain." My cyst is in the center of the brain and she looked at the scan (she was an artist) so she could see that they could go through my nose.
So deep in my heart of hearts I have to wonder how this child suffers. Has she found the group? Does she understand what is going on with her? What hell has her mother has gone through knowing there was SOMETHING,but never knowing WHAT?
When I met my first "baby" I met her mother on Yahoo! groups and was just starting The Arachnoid Cyst foundation. It's been an arduous journey for myself and I have brought 2K people on my back. It doesn't always work, I can't always help but I can listen and do my best to try and keep you informed in the latest modalities offered, even though most of us are on disabiity and can't get the services we need from doctors that don't try to understand what is really happeneing.
Abortion. This is not a political debate. If you don't like what I have to say then start your own damn site or you are more than welcome to start taking phone calls from people freaking out, I'll be more than happy to LET YOU DO IT, because I'm exhausted and tired of being screwed by the medical community too and when I read about these babies with shunts and brain surgery it makes me want to die; they haven't even lived and I know they will one day suffer with Syringomyelia too. It's not about YOU but the life and health of YOUR CHILD. If you want to have a child with an incurable degenerative disease then that's your right. OR it can simply die in your womb. I want you to consider other things such as the expenses of dealing with brain surgeries (emotional and monitarily), drugs, long term treatment, mental health issues as most people with this disease die at their own hands. Think about it long and hard because your baby might not have the life you want for it. Detection with a sonogram and this girl is OK (BS).
Otherwise I think you might want to do some further research than this:
If you are pregnant consider this because life is too short to live without a cure.
If you didn't like that perhaps you should read this taken from fetus.net an article by Tae-Hee Kwon, MD, Philippe Jeanty, MD, PhD. (medical professionals in case you were wondering)
Obstetrical management (of Arachnoid Cysts)
When the lesion strongly suggests an arachnoid cyst, the patient should be counseled on the rather benign prognosis of the lesion28. However, if the lesion is discovered before 24 weeks and when a more serious lesion (e.g. porencephaly or intracranial tumors) cannot be excluded, termination of pregnancy should be discussed with the parents because the prognosis is largely unknown. In the third trimester, when hydrocephalus is not present, there is no reason to modify the mode and time of delivery. In the presence of hydrocephalus with normal skull dimensions, there is no evidence that a cesarean section could improve the outcome, and we believe that a vaginal delivery should be attempted*17, 28.