I am home now recovering from my second pituitary operation. Yesterday at my follow up appointment with my endocrinologist revealed that my cortisol levels have crept back up again, and my levels immediately after the operation did not drop to the levels indicative of a cure. The pathology report of the piece of whatever my brilliant neurosurgeon removed indicated it was just some soft tissue and not even the adenoma itself. This translate to my neurosurgeon went up there prodded around a second time and did not get the tumor. My follow up with the neurosurgeon is in 6 to 12 weeks, which I am trying to expedite so that I can get a second opinion and proceed with trying to find a more experienced neurosurgeon elsewhere in Canada that may do a third pituitary operation before considering a bilateral adrenalectomy.
I have lost confidence in my neurosurgeon in being honest with me. At my last follow up appointment before my second surgery he was evasive and vague when I questioned why the resection was unsuccessful and if cells that were left behind grew back that quickly. He could not give me a straight answer for those two simple questions. At one point he even doubted that I had Cushing’s Disease (until the MRI revealed that there is residual tumor left behind) I obtained the postoperative reports from both surgeries from my family physician and the story that my neurosurgeon is telling me is inconsistent with what is dictated on his report.
I have started research on neurosurgeons in Canada with specialization in functioning pituitary adenoma. So far, it looks like Toronto have the most promising candidate.
This never ending saga is frustrating.