WELL.... I think it was a productive appt. I'll be having surgery again at some point. I don't know when yet. He didn't clear me for surgery, but agrees I'm having what they call a "recurrance". He told me to do some more testing, and to get another MRI, to see if there is any tumor regrowth showing up.
We discussed the pros and cons of BLA and Pituitary surgery. I'm still leaning toward the BLA, but in reality, there are no easy answers. If I still have some pituitary tumor left, and I have the BLA, it can cause the tumor to start growing rapidly and you still have to do something about it, like gamma knife radiation. It can cause you to have Nelson's. I don't care about the Nelson's. That's not an issue for me. Gamma knife would most likely kill large portions or all of my pituitary. I'd lose some or all hormone function.
If I have another Pituitary surgery, I could lose some or all of my pit function. Dr. F. feels that being panhypopituitary is better than having your adrenals out. That surprised me. I don't feel that way at all. I'd much rather balance taking hydrocortisone and florinef for the rest of my life, than trying to balance many, or all of my hormones for the rest of my life. Having hormones messed up makes you feel AWFUL, and it is hard to balance. I've watched people do it over and over. You adjust one hormone, and it throws another out of whack. You get it right, and something else goes whacky. It's too hard, if you ask me. There is a CHANCE I could be cured with one more pituitary surgery, but there is no guarantee. That would mean I could eventually be off of all hydro and be done with it. BUT, there is also the chance they wouldn't get it all, and I could still be facing more surgery. That seems to be more often than not from what I've seen. I've even seen people who were cured, come back after 5 yrs. or so with a recurrance. I'm not thrilled at that prospect at all.
His game plan is to see what the MRI says. If I have another pituitary tumor growing, he said he would recommend another pit surgery. If there is no tumor showing, then a BLA. He knows I prefer the BLA over pit surgery, and he understands why. He's basically leaving it up to me. He said to think about it for a while, do some more testing, and then we will see where we are once we get some more results back and whether there is a pit tumor or not.
So, that's where I'm at. It looks like 2009 is going to be another expensive year! Yay! NOT! I want to be done with this! The other thing with having another pit surgery is that if it doesn't cure me, I'll have to wait until I wean again, see where I'm at, do some testing if I feel I still have it, and then face ANOTHER surgery! I don't want to sign up for that program, thank you very much! It seems that there are no easy answers with this disease! I'm just glad that he sees what I see, and agrees it's a recurrance.