Neurosurgeon Appointment

Had my appointment this morning. The surgeon apologized for the mix up with the letter though I’m still not sure I understand what happened there. He told me he’s had four patients with Cushings disease in the last little while and 3/4 of the surgeries were successful…and of course I was unlucky number 4. Figures. I really wish there’d been a mixup and my surgery was successful after all but I guess I need to just face reality. Anyway, there was a lot of info thrown at me and he laid out all of my options. 1) Stay on the ketoconazole medication for the rest of my life – which my endo said she doesn’t want to do because it is harmful and the surgeon said it wasn’t ideal either 2) radiation therapy which has a 60-80% success rate but isn’t effective for 1-2 years afterwards 3) surgery to slice through the remainder of the pituitary gland that wasn’t removed last time to see if they can locate anything and if they do remove it 4) remove the entire pituitary gland.  If the less invasive surgery isn’t successful then they would have to go back in a couple days later to remove the whole gland anyway. 5) removal of the adrenal glands. I just don’t know what to do. I really don’t want to lose my pituitary gland because that would mean going on hormone, thyroid and salt water management for the rest of my life. I asked about fertility as well and he said he didn’t think that would be too hard to manage with hormone replacement therapy but we should ask my endocrinologist. I asked how certain they were it was a pituitary problem and he said very certain because of my ACTH production. I just don’t want to have an aggressive surgery and end up in pituitary failure and not be cured and have to go back for more surgeries or treatments. It just sucks. I was relieved that he didn’t make me decide right then and there how I wanted to proceed. He also offered to go to my endocrinologist’s office and arrange a time for the three of us to meet which I really appreciate and took him up on the offer. I just don’t feel like I know enough to decide for myself what would be best and maybe the two of them together can help me make the best choice. That will happen in the next couple of weeks, he was going to email her right away to arrange something. Then if I choose to do the surgery he said it would happen in a week so hes moving things along quickly at least!  He said he doesn’t want to keep me waiting any longer. I am still confused about how we went from see you next year to lets remove your pituitary gland within a span of a week. I’m wondering if they got me confused with those other three patients which doesn’t make me feel too confident. I hope they have the right person!