The Arachnoid Cyst Foundation

main_header I used to talk to 2-3 ppl a week now it's each day so I can't concentrate on doing things that have to get done without your donations so I can't make us grow. I need HELP! (speakel any English?)

Welcome to the Arachnoid Cyst Foundation

This Foundation is unique as it is run by people that suffer from this ailment and that means this site is older than dirt, almost 5 years old so there are a lot of things that have changed and a lot of things I've learned that I can help you navigate through. Tragically the best of the best are falling down as I call it. Their brains are attacking their bodies so I'm losing and I really need help. The stories you read range in age (as this disease progresses) and we attempt to educate parents by seeing what we have gone through but don't have the ability to communicate as brain healthy people do.

Before calling, please read through the site.

Yes we can provide a support network
Yes we can provide patient education
Yes we can provide info to show your doctor
Yes we can help you understand your MRI
No we have no money to hand out
No we can not help you with health insurance
No we can not tell you everything is going to be OK and I'm sorry.

This site is PG-13. We use strong language and communicate as adults with the ways we suffer. If you can't take it quit reading now. It's not my fault we are ignored by the medical community and have Syringomyelia of the Brain so don't blame me for the harsh realities or if you think you will never become symptomatic because by the time you do you will wish you had done more.

Arachnoid Cyst Book in the Works!

This disease doesn’t come with a manual.

~Kate

IT MAY SOON!!!! Thanks to Tom Bohl I am able to turn this site and some of my theories into a book. You might not agree with them and that's ok... but if you want to be heard in the first publishing you better TELL ME NOW!!!

Here is Some Initial Information:

Clinical Modification (ICD-9-CM 793.0) Arachnoid cyst (definition of arachnoid cysts)

If you want to see an AC surgery procedure then click here.

It's an ongoing battle. I get several new letters a week from people always telling me their doctors say "it's all in your head." Perhaps you receive a phone call from you physician dismissing your cyst as nothing. Perhaps you were born with it (click to read my favorite article). Perhaps you got it from a car accident or a soccer ball.

"They" tell you there is nothing wrong with you but you are tired, your back hurts, your neck is stiff and your body aches and you have moods swings that would put Linda Blair to shame.

Don't kid yourself. You really have something in your brain that is causing you to have inexplicable problems. You need a team of specialists that will help treat your problems and not dismiss them as your imagination. They will often tell you to see a psychiatrist that there is nothing wrong but that's because they are ignorant and don't understand what it's like to live with a rare neurological disorder with no known cure, very little treatment and not enough information.

If you find ANY information on this site that has benefited you please donate at least $10. I found new info to print out for your doc so if you want access... hand over some bucks! I take the time to put this site together and give you info.

This site is NOT to take the place of medical advice but to show you that you are not alone, call me so I can give you emotional support and do my best to advise you as to how to navigate living with your brand new brain tumor, YEAH! There are things your Dr. isn't studying, reading, learning because he just is too lazy, misinformed or thinks that the medical gods that wrote the book on how to have a "benign" brain tumor are correct so s/he can go back to making money on people dying from cancer. Luck of the draw. If you are located in some cities you can find treatment however...