Originally Posted by Janeteve

Hi Jo's mom. One thing I have found is that many docs have never seen on of these cysts. As for having multiple cysts at once, I have not heard of that but my only knowledge of them is due to my own symptoms and surgeries. There are a couple of great pages on facebook reguarding these rare cysts. One is America's colloid cyst survivors and another is just colloid cyst survivors. First thing I can tell you is that you will have to be persistent and make them refer him to someone who is knowledgeable hopefully close to you. My surgeon is in bowling green, KY and he is awesome, but there are some at Emory and some who have seen others around the country. Take this seriously and be persistent. I want you to know that with removal we do pretty well. Fir a knowledgeable surgeon who has done these, they are fairly simple, concidering. However, a doc unfamiliar with them just sees a cyst and the thing was explained best to me like this. They are benign tumors in a malignant location. Please check out those sites and demand they send him to someone who has treated these before. Best wishes and prayers for a great outcome for your son and your family.