Rare Disease Tarlov Disease

I have been diagnosed with a rare disease called Tarlov Cyst Disease. There is no doctor or specialist in Canada to help or is aware of this disease as it is rare. The only option is to see specialists in the USA where Canada will not cover insurance. This entire surgery will be an out  pocket expense and the funds I do not have readily available for surgery. 

This disease is of the spine and is extremely debilitating for those suffering. This diagnoses has changed my life and never in a million years would I have imagined something like this happening.  This has sent me into a major depression along with intense anxiety considering the nature of this disease. 

I am reaching out for all the support and help I can get to go through this. Any help at all I will be grateful for.