I too had pheos but mine were on my adrenal glands. I've heard of cases of it being metastatic but I have never heard of it actually forming in the brain without touching the adrenal glands. That is unreal and I'm sorry you've had to deal with that. I can definitely believe it's a 1 in a half billion thing. Wow.
There is a pheochromocytoma board if you would like the link. They are great people and a huge help when you have questions about pheos. Let me know and I'll send ya the link. :)
Take care and I hope that it was only the one tumor and you are now free from it. I'll cross my fingers for ya. :)
My name is Stephanie and I am a 41 year old wife and mother of two beautiful, vibrant children. In February 2009 I was diagnosed with a brain tumor. I had it removed and the pathology revealed that it was a paraganglioma/pheochromocytoma - a rare neuroendocrine tumor. I am still being tested to see if there is evidence of neuroendocrine tumors elsewhere in my body, although so far my team of doctors have found nothing. If after this next round of scans they find nothing to indicate that the brain tumor had metastasized from somewhere else in my body then they must conclude that mine was a Primary intracranial paraganglioma - which according to them doesn't happen. I think the stats are something like 1 in half a billion - that's right, I said BILLION! I am here to get some support and to communicate with people that might be on the same or similar journey. Peace :)