How you brain works... IN ENGLISH!
We are not like other people...
The stages of Arachnoid Cysts.
How your diet can effect your quality of life.
DO OUR OWN RESEARCH!!!
Non-medical approaches to dealing with pain and pressure.
Let it all out in the AC forum at arachnoidcyst.net
Over 100 stories from real AC sufferers
Submit your own story.
Confused... no kidding. Read this BEFORE you talk to your doctor.
It is really hard to find doctors that even know what an Arachnoid Cyst is.
Over 100 others know "It's all in your head"
Please join
ArachnoidCyst.net so they can all "feel your pain" .
Welcome to the Arachnoid Cyst Foundation
This site is unique as it is run by people that suffer from this ailment.
It is NOT to take the place of medical advice but
to offer you emotional support and advice. 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
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.
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) 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.