First of all, thank you so much for accepting me into this group. My name is Lauren and I was just diagnosed with ES a week ago today. The ENT that diagnosed me says that he isn’t “seasoned” enough in that area to know much about it because it is so rare. He is sending me to a specialist at UNC Chapel Hill ENT Oncology Clinic to a guy that knows more about ES and can help me. I am in so much pain constantly and hope that seeing this new surgeon will help me!
I am so glad that there are groups out here that we can discuss our syndrome with and get some positive vibes and feedback.