When you are full of despair and need someone just to listen and you want to hear I've got the ear. But I need HELP too to build this fledgling foundation and I NEED to help you navigate through this nightmare of having a brain tumor nobody wants to acknowledge. You won't get an answering machine on Sundays, it's me! Please be aware of the time difference and respect the hours since I have a 5 yr old. Right now where I live it is about: 05:53 am. So DON'T CALL ME NOW!


Your donations will help support our cause. We are waiting for the last piece to finish up the complete non profit status but if you need a number then I have one!.

I'm a 46 year old female who in 1995 was diagnosed with a Sub Arachnoid cyst after I started having seizures again after having been seizure free for years. I had never had any kind of Cat scan MRI,Etc until 1995.

At that time it was egg size. I was told I was born with the cyst.That it was caused by a small stroke I had before I was born. I never asked anyone did the location have anything to do with what may have caused the cyst.

Even though I had problems for years.

It was growing pains the Doctor told my parents.

Mine started growing larger after I received a injury to my neck. I damaged 2 disc's in my neck and the injury as well as the tests,injecting dye into my Spinal cord,and the Surgery,had a lot to do with the cyst getting bigger. By the time I had surgery in Feb.2000 it was baseball size and creating massive problems. I had a great Surgeon & I did great for a while after surgery.Felt great for a while. Better than I had in years. But that didn't last.

They drained it,no shunt.And from what my Doctor said they could only drain it,not remove it completely because of the area it was located in.

Even though the cyst hasn't gotten large again,The problems I am having are the same as before it was drained.Only I guess because of my age they are a lot worse.

I can barely use my arms,I'm in a lot of pain with my arms hands,and neck. I have to have help dressing,washing my hair,combing my hair. I can't even read my own writing anymore when I do try to write something. Mood swings that are off the wall. Severe depression.My memory is gone completely. Black outs,vision problems,Etc. I use to be a very strong swimmer,Now I can't even Dog paddle.

I can't use my arms. I did a lot of crafts,Bowling,Gardening,Etc. I have No muscle control at all with my arms and hands.And God lots of pain. He doesn't seem to think that the problems I have now have anything to do with the cyst itself since it hasn't gotten large again,are as of last year it had not enlarged again.Even though the problems I am having are the same
as before only stronger than they were before the surgery.

Age maybe?

Anyway here's my short little story.

PAMELA