The Cyst Inside My Brain Burns Me Everyday, 1992.
Welcome to the Arachnoid Cyst Foundation. This site is focused on educating you about arachnoid cysts so you can become your own advocate. This is just like any tool and here to make you not feel so lonely as you try to discover who you are in your journey trying to regain some of your health so the worst of the symptoms subside from your diet and you are not at the mercy of them. Since most doctors tell you Arachnoid Cysts "don't cause problems" while subtile symptoms seem like they are "all in your head." THIS site is NOT to take the place of medical advice but to offer you an understanding as you read stories from other people suffering the same way you must register to get in further. Since 2003 we've collected people's stories (which can be seen when you login) spoken to 3000 people, keeping up with their stories currently, trying to help them understand their bodies, psyche as we come to a meeting of the minds. We attempt to educate parents by helping them see what we have gone through as we have aged, but we don't have the ability to communicate as easily 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 so he knows it's not "all in your head"
- Yes - we can help you understand your MRI
- Yes - we can help you with disability forms
- No - we have no money to hand out until we get a grant writer
- No - we can not help you with health insurance
- No - two patients are alike but we suffer unilaterally. Never "fixed" but good days and bad days we're in this together... for life
This is information accumilated over the last 22 years researching, developing our own problems and listening to other people and their issues. It's not our fault we are ignored by the medical community, and develop further syndromes such as Syringomyelia (when your spine has a cyst either on the outside pushing forward or the inside pushing out, Chiari Malformations ("Mega Cisterna Magnas eventually turn into Arachnoid Cysts) so please don't blame the ACF for the harsh realities of suffering from these diseases, or if you think you will never become symptomatic- because by the time you do, you will wish you had done more before your get to that point when a symptom could have been stopped before it progressed
It's an ongoing battle. I get several new letters a week from people, always telling me that 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. 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 mood swings that would put Linda Blair to shame.
Don't kid yourself. You really do 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 they 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.
New info from Zac