I am a 33 year old female, diagnosed with Cushing's Disease
Question from Dana:
I am a 33 year old female, diagnosed with Cushing's Disease in 2002. I had transsphenoidal surgery to remove the pituitary tumor which seemed to cure the disease. I was able to become pregnant after the surgery and also able to discontinue replacement cortisone after several months. My symptoms seemed to gradually improve as expected. However, last year (3 years post-op), my progress stopped, and i began to experience the same symptoms again. I insisted that my doctor run new cortisol tests and send me for a repeat MRI. My serum corisol levels were only slightly elevated, and my MRI appeared to be clear, so my Dr. basically told me there was nothing going on. As time passed, my symptoms became more pronounced, and finally, i convinced him that perhaps he was mistaken. Finally, we ran 24hr urine free cortisols - the first was 325. My most recent was 407. He thinks that Gamma knife is the best option, but I am not convinced. I have not yet had another MRI. Here's the further complication: at his encouragement, my husband and i continued to try to get pregnant again, and against the Cushing's odds, we have. I am currently approx. 12 weeks pregnant. I have had 2 ultrasounds, and the baby seems to be developing normally. My blood pressure is elevated, but has not yet reached the point of needing to be medicated. My endocrinologist wants me to deliver as soon as possible after a positive amnio and immediately undergo the Gamma knife procedure. I do have a friend who underwent the transsphenoidal surgery successfully at UVA last year and was thrilled with the treatment she received there. I'd truly appreciate your expert opinion. I am in W-S, North Carolina and would certainly be able to travel to UVA if you thought it might be helpful.
Congratulations on your pregnancy. You are correct that for many patients with Cushing's conceiving can be difficult.
With regard to your Cushing's disease, the odds of a cure with a second conventional surgical resection are usually much lower than for an initial resection.
Gamma Knife surgery is frequently used in the setting of recurrent or residual pituitary adenomas (i.e. both secretory ones such as in Cushing's and nonsecretory ones). The success rates with the Gamma Knife even after an initial surgical resection are quite good.
After your baby is born, I would recommend that you undergo a repeat brain MRI following a pituitary adenoma protocol. If the adenoma is not too close to the optic pathways, you would likely be a good candidate for Gamma Knife surgery. At the University of Virginia, we have had extensive experience with the radiosurgical treatment of pituitary adenoma patients.