Hello Mindy,
I am really sorry to hear this, I have been following your journey and your posts mainly through the CK forum. Did Dr. M. say how much it has grown? I just wanted to point out that growth does not necessarily cause trigeminal neuralgia. My AN was large enough to impact the trigeminal nerve causing numbness, but never pain. If you decide upon the surgical route, you should ask specifically the doctors if they think that the pain will go away.
I also had failed radiation, followed by surgery. I understand exactly how you feel, as last year this time I was exactly in your shoes, after getting my MRI results. I consulted with a lot of doctors, and all of them, except from one, said that based on their personal experience surgical removal of a radiated AN is not necessarily more difficult for an experienced surgeon. It all depends on the specific situation. They sometimes see sticky non-radiated tumors and vice-versa. The neurosurgeon that I finally chose said after my surgery that in some areas it was easier to remove, and in some others more difficult. I ended up with an excellent outcome and I recovered quickly with no side effects.
Having said this, you know already how important it is to find an experienced team - a consult with HEI is an excellent idea. It seems so hard right now, but don't despair. There are many stories here of successful removal of radiated ANs.
Best wishes,
Marianna
