In the beginning of January I sent Dr. McC (neurosurgeon) a disk with Alex's 6 month post op MRI, asking for his opinion. This man is a Godsend! I find it unbelievable that a surgeon is willing to look over an MRI, sent from out of state, and give his thoughts on it at no charge whatsoever. In our case this is the 3rd time he has offered his services. Today I received his response.
Dear Mrs. Bibby,
I have looked at the disc you sent, and at the report. I again think there is still some decreased signal in the right half of the gland, which was what I saw on the earlier scan but with less certainty. It doesn’t have sharp margins on its medial side, so might be hyperplasia but equally, could be a subtle area of tumor. The report comments on a small cavity at the bottom edge of this area, which I saw as well, indicating that in the previous operation this area was touched, but it is very small indeed and so I do still think that some residual disease is still present. The left side of the gland looks fine. I know you mentioned trying to decide on repeat pituitary surgery vs. adrenal surgery—this is always a personal decision, and it is honestly hard to know whether removing the area in questions would effect a cure, or whether it would not. Certainly the possibility of causing diabetes insipidus would be present, as such removal would take the surgeon quite close to the stalk. Let me know if I can help further.
So, my feeling is that going forward with the BLA is still the right decision. It's really hard not to do a second pituitary surgery when the surgeons can see something on MRI, but I have a hard time buying that a possible cure makes it worth the risks. This is the first I've heard mention of concern for diabetes insipidus based on the location of Alex's tumor. Permanent DI can be treated, but that's just one more thing to worry about if we were to choose a second pituitary surgery.