It's a medical fact that cortisol is normally made only by the adrenal glands. Alex had her adrenal glands removed to prevent her body form making cortisol. So the question is...where is the cortisol coming from?There are basically 3 possibilities:
1.) There is a tumor somewhere in her body making cortisol. This is called an ectopic source. It is highly unlikely that Alex has this type of tumor. All of the testing done prior each of her surgeries as well as her pituitary pathology contradict this idea. The fact that she had a 2 year remission after the removal of her adrenal glands is another reason to believe this isn't the case.
2.) Adrenal remnant tissue can be left behind at the time of surgery. In some cases an inexperienced surgeon can leave behind some of the adrenal tissue. Alex's surgery was over 6 hours long, her surgeon is highly respected for this type of surgery and he explained how he removed extra tissue around the adrenal to prevent this from happening. I don't feel like this was a "botched" surgery, but I think it possible that a remnant could have been missed. Her pathology indicated a ruptured cyst, possibly when it ruptured a bit of tissue migrated away from the adrenal? That's speculation. The surgeon also told us immediately after surgery that Alex had very large "sticky" adrenals, they were adhered to her other organs. It seems like a bit could have been missed there as well.
3.) Rest tissue is our top contender. During embryonic formation the adrenal gland "migrate" before they get to their final destination atop the kidneys.
From this article
"Adrenal rests (AR’s) or adrenal rest tumor is a tumor consisting of ectopic adrenal cortex tissue. The lesion is relatively common, detectable in as many as 20% of post-mortem examinations."
Our assumption at this point is that one of these pieces of adrenal tissue has been stimulated by ACTH to the point that it is making significant amounts of cortisol. This is what we hope is showing on the CT and what the interventional radiologist hopes to ablate.