When you have an Arachnoid Cyst, it's more like a syndrome because of the stages and Rites of Passage we all must take. It is a long term, degenerative, systemic, auto-immune affliction.

I've had the honor of being raised with someone with a prolactoma, as well as a chiari malformation. I was married to a man when he obtained an Arachnoid Cyst in a motorcycle accident, and I stayed married to him for four years as I was waiting to have my second surgery. Given his true colors, it was a joy to watch him decend into madness. I have dated a man from St. Petersburg with a large Arachnoid Cyst, as well as a girlfriend with a Chiari Malformation. I believe the Russians to have their cysts from the radiation so close from Chernobyl. (There tends to be more reports of Arachnoid Cysts from Fugshama)

In all my personal experience, as I learned to be an advocate, I have spoken with over 2000 people that suffer from this disease.

As tragic as it may sound, if you are pregnant and you can see the cyst on a sonogram, please consider termination. You will do most importantly the child, as well as yourself, a favor if you do not suffer the children into this disease. These issues will not escape you, and the heartache you will save yourself will be much easier to deal with than condemning its life (as well as your own) by letting it suffer horribly. What you will bring into the world is a child that will have problems for the rest of its life. Perhaps a shunt will help, but if you can see it in a sonogram... you will make this child a guinea pig as long as it lives. My last neurosurgeon said, "It is a tragedy". When a child is born with an AC you are causing it insurmountable pain. I know myself that it is easier to mourn the loss of a child than it is to suffer yourself.

Dr. Christopher Duma, my last neurosurgeon, told me that it was a "tragedy" for a child to be born with this affliction.

As a child that is not treated they will do things like beat their heads against the wall or floor, because the pressure is so high that their brains are telling them to kill themselves.

Children as early as three have been reported as saying, "Mommy I want to kill myself." They have emotional issues at the drop of a hat. Some are perfect children that act like they were sent from Heaven, while others are so scary you won't have dishes by the time s/he is a teen. We can have problems with complex social situations (I was caught sleeping in the closet while the entire neighborhood was searching for me because I loved to sleep so much.)

Mandi (who got her first MRI when she was 12) describes it as "confusing" for people to understand. Her brother was also later diagnosed. Children are inordinately cruel and that cruelty lives a lifetime.

As we grow into teenagers we start to understand we are different by the way we act our and behave. Watching my mother battle cancer, I was able to see how her doctor treated her. I was taught how to think like a doctor when I was 15.

I recently discovered my brother has a Chiari Malformation and I have Syringomyelia. When you have a Chiari, your cerebellar tonsils holding your brain start to fall, and that's another way to develop Syringomyelia.

I feel as if we have hit the trifecta of diseases that cause problems, and that are hereditary from when our family were the type of blue bloods to make society move forward, as the tsars suffered from hemophilia. We were unique in our own ways, as we fought over stupid things that I couldn't do, with people I cared about. 

I am seeing this unique syndrome start  in my brother, and I know that he is developing Syringomyelia as his tonsils are being extended; this is what a Chiari Malformation will do. I was lucky to develop my intellect (that scares me), as well as psychic abilities which develop because we suffer with holes on our souls. Some of us are more psychic than others, because we have sub arachnoid (as in sub-arachnoid hemorrhage, or an aneurysm. There is one thin layer of the cyst that is keeping blood and nutrition from getting to, and waste from getting away, from the tissue touching the brain.  So basically it does not get any blood to it, and as the child grows it causes a low seated burn never ends.)

As teenagers, we start to feel the pressure more and more. It feels like your brain is screaming and telling you to kill yourself because your brain can't think straight, or at all. As for me and my brother, our explosive diseases made us attack one another, as well as make it difficult to have a relationship because we didn't like one another.

Some kids get an MRI after they have seizures, which discovers the Arachnoid. Or they experience an event where they lose consciousness, and the doctors want to find a reason. These are usually incidental findings, and are simply dismissed as 'asymptomatic', despite the fact they just had a symptom.

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