K's Mom

My daughter has MEN2b. Recently she was diagnosed with Cushing's. It was originally thought to be related to the medullary cancer or a pheo in the adrenal glands and she went to Barnes in St. Louis to have both adrenals removed. Then an MRI showed a pituitary tumor and they cancelled the adrenal surgery. We're now waiting for the results of blood tests to determine the source of the Cushing's. If they are inconclusive, she will have a petrosal sinus sampling test done. We're told this is extremely rare. Has anyone on this site dealt with MEN2b and Cushing's?