Thank you so much for your response. I’m so glad your daughter is doing better! So the surgeon did remove what he thought was the tumor, but it didn’t stain for acth & her levels didn’t fall. Anyways, I’ve taken her to MGH in Boston & the neuroendo we saw was very dismissive- said her highs weren’t high enough. After hearing all of her symptoms, told me to take her to a Gastro. It was a very disheartening apt. Dr. Friedman from California, does think she still has Cushings Disease & does see a new tumor. However, we have to find a surgeon we would trust. We’ve been busy ruling out anything else causing her symptoms before we subject her to a second surgery.

Who was your daughter’s endo & surgeon at UVA?