Toni,
I also have a malformation that has now invaded my throat. I have not had any treatment yet. I am scheduled to have lazer surgery in Oct. Dr. Waner of the Arkansas Childrens hospital will be my physician. I have not had any pain only mild discomfort so far. I hope that your situation improves and that you can find the help that you deserve. It is so hard to find Dr.'s that are knowledgable for our conditions. Do you feel comfortable that your Dr.'s are the right ones for you?
Keep your chin up and know that there are others out there who can sympathize with your situation. You are not alone in this...Good Luck