I need support/help
I am 61, and have had a diagnosis of Cushings for 5 years now Ihave a pitutitary tumor and one in the adrenal. For a few years my symptoms were not too bad- moon face red/roseasa on face - trension osteoperosis-high bp and cholesteral-mid body heaviness- along with this I have bad pelvic pain when sitting or standing for veruy long- and a slipped disc that may or may not cause the pain. I have seen 10 specialists for the issues mostly the burning pain- and no conclusions I had agressive therapy to the perineal area- inc Botox and radiofrequency abulation and several epidurals- I am faced with either getting a pain pump or a spinal fusion but not sure where to turn or what to do next. In order to have surgery on the Pitutiary tumor I need a test call ed petrosal sinus sample -it uses ATCH during the test but now I am told it is not available anywhere -so I need to know if anyone has this diagnosis and if there is anyone in the mmidwest who is a specialist in Cushings. How do I find ourt which Mayo is approiate for me?- or if they have a specialist who knoows as much as some on the east coast who sees pts alot--I am thinking Mayo because of the complex issues. I also have some anxiety issues with the cushings which puts too much stress hormone in my body. So I dread traveling but have gone to LA and Pheonix for specialists and the plane ride is a killer on my pain-can anynoe give me any feedback?