I suffered from Cushings when I was 9 years old. I had pituitary surgery, bilateral adrenalectomy (back in 1988 when it was not laparoscopic), then 2 more pituitary surgeries as my tumor grew and regrew too close to the optic nerve. My last pituitary surgery was followed by Gamma Knife Radiation. That was when I was 19. Thankfully, since then, my ACTH levels have been normal, so there is no evidence of regrowth of pituitary tumor. I just turned 36.
The good news is that despite needing repeated pituitary surgery, I recovered well from the Cushings once my adrenals were removed and I was on daily replacement steroids. I have gone on to have a fairly normal life, including 4 children with no help needed in conceiving. I guess the doctors consider this basically a miracle considering my irregular cycles and all the pituitary surgery. I did end up with diabetes insipidus from the last pituitary surgery, which is probably the most uncomfortable (and expensive) lingering problem. It can be very uncomfortable at times, particularly when pregnant is is difficult to get the right dose of DDAVP.
Not sure what prompted me to look online for others with Cushings Disease/post adrenalectomy, but I have never in my life met anyone else with my condition and my endocrinologist says she has only one other patient with adrenal problems, but that person still at least has 1. Of course doctors can’t tell you who their other patients are anyway. Obviously when I was actually suffering from Cushings there was no Internet. I guess it would just be interesting to compare notes about living without adrenal glands. Since I was so young when it happened it is all I’ve known and I’m thankful for how basically normal my life is. I see too that I can encourage people that although I do take 3 medications multiple times daily, I basically have a normal life, including 4 normal, healthy children ages 9, 7, 5, and 2.
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