Help the Arachnoid Cyst Foundation CA!

We are raising money to build the Canadian Arachnoid Cyst Foundation. The Foundation has three main goals:
-To establish a support group to assist in the daily affliction of living with an arachnoid cyst, where moral support, advice, and personal relationships are offered;
-To accept donations and issue grants to assist in the financial burden of living with an arachnoid cyst, to help cover medication  and/or surgery costs;
-To raise awareness within the Canadian medical community of the problems that arachnoid cysts do indeed cause.

Surprisingly little is known about arachnoid cysts, and doctors have, for the great majority, been educated that these are 'asymptomatic', and do not cause problems. Despite the overwhelming number of people with arachnoid cysts which are dismissed as an 'incidental finding' on MRI or CT scan, they all seem to present the same issues, symptoms, and affliction - depending on the area of the brain these cysts sit on, one or more functions of the brain can become impaired.

Symptoms range from headaches to: 
-seizures (petit and grand mal)
-ataxia (abnormal gait - walking)
-visual changes
-increased intracranial pressure, hydrocephalus
-personality changes
-severe migraines
-tremors
-psychiatric-appearing symptoms (fairly common)
-changes in the structure and function of the brain
-loss of functions, such as urinary and/or bowel incontinence, major/minor memory problems, functions of certain areas of the -brain such as mathematical skill, imagination, and other cognitive abilities;
-symptoms of Attention Deficit disorder
-stroke-like symptoms (one-sided weakness)

Many people get turned away from the ER, told that they are or will be fine, go on to have many many more problems, and it is the Foundation's mission to save people with arachnoid cysts years and years of needless suffering by having patients properly treated and attended to in a dignified manner. These people are told "it's all in your head", or that they have "conversion disorder", a condition that is much more rare than these cysts themselves, and reportedly manifests stress into physical symptoms. They are eventually treated as psych patients and never receive the medical attention that they truly do need.


What we are looking for to get started is not much. Our budget includes our cost to get started, pay for the smallest amount of legal help we can, help the Foundation become a legal entity, and get started gathering donations and grants, so that we may issue help to people who are badly in need, and otherwise unable to get the assistance they need, in the time frame they need it.

This is unfortunately a degenerative condition, meaning that while patients try to find a doctor who recognizes their signs and symptoms, and can come up with a treatment plan to help them, options become 'stale' where they may have once been a viable treatment.

Surgical intervention can mean many things. Typically these can be fenestrated, meaning a hole is made in the side of the cyst, and CSF (cerebro-spinal fluid) can flow freely throughout the brain, and can offer relief. Other ways of treating the cyst can include complete removal, needle aspiration (this can result in the cyst re-occurring quite soon afterwards however), and shunting of the cyst, with or without tubing to direct the CSF elsewhere.

 As you can see, the options are all somewhat intrusive, with the most minimally invasive methods using endoscopic tools to do their work.Doctors would rather not carry out these procedures if they don't feel it is necessary, and with arachnoids being at the bottom of their lists of possible causes, you begin to see where the medical system can create a roadblock, failing people where they need help the most.


We would very much appreciate your support as we build what should help some of the most needy people nobody knows!