New Here;

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.

Hi Lauren & welcome!
There’s lots of info in the Newbies Guide section all about ES if you need it. The past discussions can be useful too, & they’re searchable by topic.
In the Doctors Info Section we have a list of doctors familiar with ES; lots of doctors are worried about treating it, or are unfamiliar with it, so it might be worth having a look on the list to see if there’s anyone you could be referred to, & perhaps ringing ahead to the doctor you’ve been referred to to see if they treat ES; other members have done that to save themselves a wasted trip.
I hope that you can get some treatment soon!