Hi: New to the group. Had the sphenoidal surgery on 4/9/19, to remove a 3mm tumor off of my pituitary. After 6+weeks, cortisol serum, 24hr. urine, & ACTH levels are all still abnormally high, indicating surgery did not work. Endocrinologist suspects not all tumor was removed. My understanding is that I have 3 options: repeat surgery, gamma-knife radiation, or systemic anti-fungal medication that is very hard on liver. Can anyone relay their experience with any of these methods, please? Thanks!
Hi, sorry for the delay in getting this post up on the forums – we are in the process of phasing out the forums, in fact.
I’m sorry to hear you had an unsuccessful surgery – I’m familiar with the feeling. I had two unsuccessful surgeries in 2012 and 2013, a brief remission, then recurrence a few years later. I’ve taken one of the meds and had radiation in addition to the surgeries. You are correct that your options right now include repeat surgery, medication, and radiation. Gamma knife isn’t the only type, and the anti-fungal medication isn’t the only one available. I hope your doctor is aware of and comfortable offering the others? If not, you may want to look into the other options so you can make the most informed decision for you. There may even be clinical trials available with further options. You can e-mail me at [email protected] if you have more questions about those things and I will do my best to point you in the best directions.
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