My 17 year old daughter has headaches that only dull with medication and periodic shooting-shocking pains that go across her head that only last seconds. She has a pituitary tumor that is 1.78 cm. She is leaking prolactin but in low levels. It is not typical of a pituitary macroadenoma as it encompasses the entire pituitary except for a thin white line around the mass which they think may be the pituitary. So one nuero and endo think her hypothalamus is fat-and the the tumor in the pituitary is pressed on the hypothalamus, and that the low levels of prolactin of 49.1 would be consistent with a hypothalamus problem and another neuro and endo think its the pituitary and even though it doesn't look like a typical prolactinoma that they will treat it as such. In the meantime my daughter is hormonally depressed, not the same, in pain and has these headaches. So I believe we are headed toward the removal. I am worried about her future and want to know if anyone knows the prognoisis of entire pituitary removal, would gamma sugery be possible to shrink it and if there is a "lesion" or fat stalk what do they do about that? If that is the cause of her headaches then we removed the pituitary for no reason. Confused!
Well, if they do surgery, they will see in real time precisely what the problem is concerning both the pituitary and the hypothalmus, and there will NOT be an outcome where they remove anything for nothing, as you said. And if I read your post correctly, both neuros said her pituitary is affected by a tumor. The idea is to try to reduce the tumor, and if that doesn't work, they'll try to take the tumor out... this may or may not require them to remove the pituitary, which they do not want to remove the pituitary if they can help it. Also, if they do surgery, they are going to fix everything that is abnormal in her head, unless it would cause more harm than good, so if there's other abnormal structures in there, like the "stalk" you referred to, they'll get that out, too. And when her problems are resolved, they will do followup visits and give you a prognosis and recommendations for any needed further treatments, until they "release" her from their care.
If you want to, you can get a third opinion, if you can pull strings and have her seen by a top neurosurgeon somewhere, that would be extra good. Have her records forwarded to the surgeon who will act as a consult to you, and ask him will he explain in a way you can understand what the heck is going on and so forth. If she were my daughter, I'd be terrified. So, it's important you understand as best you can what's going on, and eventually YOU need to make a decision and go with one of the docs to treat her. A similar thing happened to a relative, docs differed on what to do, one thought it was cancer and another didn't, so my relative became proactive in his teenaged son's care, took the worst-case scenario route for treatment, and his son is now a 10-year cancer survivor.
While all this is going on, her regular family doctor ought to be keeping track of all this and offering his advice, and he also ought to be giving her medicines to help her pain, help her sleep better, and perhaps help her undoubted hormonal imbalance. If he gives her anything, tell what all she's on to any specialist who wants to run a test or whatever so the results won't be skewed. When I was about her age, I was in a car accident, and I was given all sorts of medications for months, and it kept me comfortable. But I gotta say, my loving mother's presence was the most reassuring part of the whole ordeal. Hope this helps you out a little.
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