The post with the cyst foundation, I sure would contact. Do all the research you can via the PC. Since your doctors have not seen a patient like you before, it would be in your best interest to seek a facility even outside your country for more DX work, to see if there is some other option for you. Don't give up, and I will also keep you in my thoughts and prayers. There are others on NT that have this cyst. I hope they will respond to you and give you some helpful information. ginnie