I am curious how you explain a 19 year old girl with a 7cm AC (found in a CT after a car accident 10 years ago, that has not changed size or shape in 10 years) who:

* Scored 1470 on her SAT's (no prep course, single test)
* Had a 4.3 GPA in high school, with a 3.7 in college
* Is extremely organized
* Is loving, caring and always been calm and easygoing, with minimal behavioral problems (even as a toddler and through the teenage years)
* Is confident and self assured - active socially and politically
* Has flown to Asia, Europe, Australia and numerous times to Hawai'i - in addition to 4 or 5 domestic US trips annually.
* Has has had regular, painless menstrual cycles since she started (at 14 1/2)
* Is a karate blue belt, is a certified scuba diver, plays lacrosse and soccer, runs cross country, and volunteers regularly
* Other than stitches resulting from a child pushing her off a swingset, has never had more than the flu. No headaches, injuries, etc.

The people on your site clearly suffer painfully from their AC's - but you are causing just as much damage as those who try imply that all AC's are not problematic.

In addition to the information you provide for those who are having problems - how about providing hope for those who have been diagnosed, but are not having problems (while ensuring they monitor their AC and watch for problems)?

My daughter was searching on the web for sites to use for a paper she is writing - and forwarded your site, due to what she feels is information unbalanced to the point of obscuring the beneficial information you have.

* * *

Dear Mom,

I did not respond correctly to you via e-mail and I apologize. I had just finished a workweek and I don’t always think clearly by the end of the week since I am brain damaged, on narcotics, fighting pain and quite honestly, your letter really perturbed me greatly. It was not right for me to tease you for this site not giving hope but I am an adult and I know most of the people out there can make their own informed decisions and don't have to be told what to think or how to feel about their own bodies.

I want everyone that comes here to understand their options and the problems that we all might share. You still make your own decision. It’s your body and it’s a gamble. It’s better for you to make an informed decision because maybe you will find the answers in other people’s pain.

I know your daughter, too, much better than you think. I was 19 and I lied to my mother and myself because you see AC patients like to pretend everything is “OK” so you won’t worry about us, even to the severe detriment of our physical and mental health. We are fantastic liars because that’s what society, doctors and our families want us to be because really it’s “all in your head.” We are also great actors and blindly follow anyone that is nice to us off a cliff.

So when I was 19 and my mother was puking everyday from chemo, my sister was also going through treatments with leukemia I decided to be a “Big” girl and go see a neurosurgeon by myself after I had my first brain surgery. It was my 8th brain surgeon.

He looked at my scans and said “Oh yeah, I see how the doctor aspirated your cyst. He left some fluid in there… do you want me to get it out?”

I flipped. Not just a little. I went back to my car and cried and cried and cried. Here I was, I had just had brain surgery 5 months ago. I was in pain all the time. I probably had surgical Arachnoiditis and my membranes were very likely to have been inflamed. I felt like a guinea pig. My sister had leukemia and my mom had cancer. I couldn’t put my family through the
stress of another surgery as we were already emotionally tapped and that was before we found out my grandfather had esophageal cancer.

I told myself that everything was going to be all right. That the pain inside my head was “asymptomatic” and that the jerks that were treating me were right because they knew so much more than me. They were doctors and my money was their best interest.

I never told my mom about that visit. I lied and told her everything was OK.

I will explain to you now why your daughter is the way that she is:

* Scored 1470 on her SAT's (no prep course, singletest)
* Had a 4.3 GPA in high school, with a 3.7 in college

We are a mixed bag of extremely intelligent people. Where your cyst is depends on which section of your brain your cyst presses against. If you look into the mapping of the brain and it’s functions you can see where your daughter benefits by having this extra stimulation and pressure on her brain where her cyst sits. (Silver Lining)

Plus since you are always in pain (and might not realize it) you have to think about something else because nothing takes away the fact that you can feel this thing in your head 24/7 so you have to think of something else or go nuts.

* Is extremely organized

We have obsessive-compulsive disorder. It manifests itself in many forms. Some of us can’t stand to be in crowds (I think the older you are the harder it gets), some of us are germ phobic and the ones that are suffering so much that they can’t move just don’t care enough to go through the motions of what society cares about. I know I was like that for about 3 years because the intercrainal pressure was too great and I couldn’t focus on anything small or organize anything. This is why the military wrote this report up which states these things are unpredictable because you can never tell when they become symptomatic and when they do. This is something to keep in mind because your daughter might not have her regular OCD order when she starts to become "symptomatic".

* Is loving, caring and always been calm and easygoing, with minimal behavioral problems (even as a toddler and through the teenage years)
* Has had regular, painless menstrual cycles since she started (at 14 1/2)

She wasn’t born with it. She didn’t have a cyst when she was 1-9. You said the accident occured 10 years ago. I can’t speak positively for the car accident people but I know a few that are older and suffer from pain. I don’t know where her cyst is and if it presses on her pituitary gland because you didn't give up that info.

* Is a karate blue belt, is a certified scuba diver, plays lacrosse and soccer, runs cross country, and volunteers regularly

Most of us are fearless because we don’t feel that panic other people do because we are dealing with the stress of our body degenerating at a slow pace and some of those thought processes and societal pressures are incidental to the way we live life.

* Has flown to Asia, Europe, Australia and numerous times to Hawai'i - in addition to 4 or 5 domestic US trips annually.

MICRO ABRASIONS in MY ARACHNOID MEMBRANE that CAUSE LESIONS from the Pressure.

OK so I think we can all agree that having an Arachnoid Cyst is a lesion on your brain. When you go up in the plane all of YOU expands and contracts since you are organic and living. Every membrane ex. your ears pop. When your Arachnoid membrane starts to expand and contract over time the layers that are being strangled start to cause tiny tears in the Arachnoid membrane, which become adhesions, or scars.

Once you have adhesions, either from surgery or just from pressure expanding an contracting, you start to develop Arachnoiditis. This hurts. A lot. This is the core pain that never goes away. This is the core pain that makes me write these words even though each and every keystroke sends back a message of pain. Understanding that this pain is “all in my head” and knowing it’s “just a cyst” does not make the pain go away.

After working all day in an upright position and putting pressure on my brain stem, which causes my spinal cord to hurt and the rest of my body to start going numb I realize that when I was 19 I was very stupid to think that leaving this thing alone and not listening to that neurosurgeon was the stupidest things I ever did in my life.

I have caused further damage to my nervous system when I could have recovered from my last surgery much easier at 19 than at 31 and I might not have ever known the joys of neuropathy or being paralyzed for 4 hours or being nuts from there being too much pressure on my fabulous brain.

There is no way to regenerate brain cells when they have been squeezed and pressed on for so long they cause other things like my spinal cord to start to deform (scoliosis) because it’s not getting the nutrition it needs from the CSF that is not taking away 31 years of waste from my precious nerve roots and when those roots start to starve they go to the next root over to steal nutrition from healthy ones until they starve everything and start to cause neuropathy.

This is why Children can recover from this catastrophe if they have proper medical treatment vs. leaving it alone and waiting for the cyst to become symptomatic. This is why when kids have trauma to their brains the brain re-maps itself and they can have a seemingly normal
life. We are still different from them because our brain gets damaged over a long period of time, not overnight.

Typically people do not die from these brain surgeries. The lowest common denominator of brain surgeries is 6 for each AC patient. Paralysis is happening already so that shouldn't be a concern if you are taking the risk of surgery. Neurosurgeons like to kid that they aren’t even doing real brain surgeries because they are stupid and don’t understand the function of the Arachnoid membrane which makes me angry because you have got to be smarter than the
doctors so you can get the proper medical attention and not end up like me slowly becoming paralyzed, developing Syringomyelia with a smidge of Scoliosis since my cyst sits on my brain stem with a dash of surgical and environmental Arachnoiditis for that pain that never lets you down.

Since you daughter did not write to me I know that you are in control of her health. I hope she quits lying to you and tells you what I told my mother when we first discovered this thing in my head. “Mom, you have cancer. You know how to treat it. We don’t know what this thing is going to do to my body but I don’t want it in there because if you have a tumor in your body and it’s cancer they can cut it out but we don’t know what’s going to happen to my body.”

I realize that you have been going through this for some time. I hope this clears up a few things for you and anyone else that thinks waiting is a good idea. I can tell you sitting in this chair now knowing how my body is responding to this thing in my head is no joy ride even though I finally have the narcotics I need to wake up the next morning and my first thought not being “I gotta blow my brain out. This hurts too much.”

And you know, I really miss my mommy. The cancer got her when I was just 25 and there was no one around to pay attention to me so that when I went really nuts no one stopped me. I hope that you have conquered your battle with cancer so that you are always there for
your daughter because one day she is really going to need you and if you aren’t there to support her through her first brain surgery by the time her symptoms warrant treatment she might not even recognize or know what to do in order to take care of herself because when the pressure in your brain gets that high NO INTELLGENCE, NO ORGANIZATION, NO MOTHER is going to help her through because all she has is herself and if she doesn’t know what to do then I guess she will know where to turn to because as long as I am living I will always add everyone’s story that allows me to and do my best so no one ever suffers like I have.

I would save your daughter the humilation of ever knowing what it felt like to be 31 and walk into a work place one day looking normal and the next day walking in with a walker and all the hateful things people can say.

How do you think this cancer thing got started? People started getting pissed because they were dying. Other people started support groups because they didn't want other people with the same disease to die or experience the harsher sides this disease has to offer.

Tell your daughter to please enjoy her life the way she knows it now because it won’t always be the way it is. Tell her to take Flax oil, B6 and eat fish and get as thin as she can so she doesn’t put more pressure than necessary on her system because most of us seem to never lose weight and weigh over 200 pounds.

I know. It happened to me and I think I really matter and my opinion means the world to a lot of different people, not just one mother. At least there is a site for people to vent and hopefully my book will sell and there will be funding for the Arachnoid Cyst Foundation. I think I know...

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