How many patients have been treated more than once with CyberKnife? What is their outcome?
How many other patients experience these negative side effects from CyberKnife?
How successful are surgical resections once the growth has already been treated with radiation?
Since I am already experiencing loss of feeling in the face, will I lose my ability to move my facial muscles?
What is the long term outcome if I choose to do nothing?
I am sorry to hear about your failed CK treatment. I will take a shot at answering some of your questions as best I can:
A fair number of CK patients go through a bout or two of heavy swelling, with problematic symptoms. However, most recover from those. CK does fail occasionally; the failure rate at Stanford is about 1 out of 100. I can assure you that the doctors there would love to know why it happens - but they don't, at least not yet. The dramatic loss of hearing I don't know, but I don't think that is common either. Maybe your previous condition had something to do with it?
There have been some cases of double treatment with CK. Not a large number, but I think that the cases reported seemed to be successful. I think there are discussions of it on the Cyberknife forum. Having said that, I'm not sure I would pick CK again, given your past experience with it.
Surgery after failed radiation is a lot more successful than some surgeons would have you believe. The risk of facial nerve damage goes up some, due to the additional scar tissue and "stickiness." There was one report where facial nerve issues occurred in about 20% of the cases in the study, which is higher than the normal rate, but still well below half. Since you have already lost the hearing, that won't be an issue.
If the AN continues to grow, you will have to do something sooner or later. If it starts pressing on the brainstem too much, the consequences can get pretty serious. It wouldn't surprise me, though, if one of your doctors suggests waiting 6 months for another MRI, to confirm growth, before deciding on doing surgery.
If you are feeling lost and alone, you have come to the right place. We like hanging out here and discussing all sorts of things, from real AN problems to what color hat you would want if someone were to offer to knit one for you.