I have had dilation done several times. Recovery for me was very easy. They want you to be with someone that can help you for 24 hours after surgery in case you had unexpected swelling. I have never had the slightest trouble. In fact it feels fantastic afterward to be able to breathe. Go to sleep wheezy, wake up breathy. I think 3 dilations is the average. Some need only one, some need quite a bit more. It really is super individual. The good news is that it is a well established , practiced procedure and going back for it is not a big deal if you need it.

Most people with WG have a misdiagnosis story. I know I do. I was finally diagnose by a nasal biopsy. I'm sorry you are having extra trouble getting diagnosis. It does happen though.

Pete's recommends at the Cleveland Clinic are good. I myself saw Dr Langford there once and she was great. One time after a Wegener's conference in Kansas City I saw Dr Villaforte at the airport and asked her a question. She was a speaker at the Wegener's conference I had just attended. I was very impressed that she took the time to talk to me and was very kind and generous with her time.

I hope you get things nailed down soon. Limbo is not fun. I wonder if the doc's at Cleveland Clinic could help with diagnosis if you continue to need it? Probably nobody has seen more Wegener's cases than these doctors. Have some soothing cool things to drink in the fridge like maybe Aloe Vera drink. You are going to feel so much better.