I am new to this site, and thrilled at the amount of support and information available here!
My Mom was diagnosed about 4 weeks ago. She's done some great homework so far and has kept a great outlook, but frankly she's starting to feel like she's swimming in the info and it's getting tiresome for her (as I'm sure everyone understands). So I'm hoping that I, with some help from this forum, can help point her in the next direction. She is 69 years old, a very active grandmother of 4, still working as an Administrative Assistant. Her AN was diagnosed as being on the 8th cranial nerve, at the right CP angle. It's 3 cm, and it appears to not be growing into the auditory canal.
She has seen 3 otolaryngologists, 2 neurosurgeons, and 2 radiosurgeons so far. What they've told her is that there is a "fair bit" of compression on the brain stem, her hearing is surprisingly good given the size of it, and she can do either surgery or radiation. Her symptoms are poor balance and hearing loss in the AN side, a "full" feeling in her ear, and some facial tingling. No one is making any strong recommendations, but as far as we can tell her best options seem to be 1) sub-occipital surgery to remove the inside of the tumor, leaving the capsule so as to not disturb the facial nerve. or 2) radiation- but she is not a candidate for Gamma Knife. So far, she has MUCH more info about microsurgery, not much about radiation.
I should add- she lives in Western NY, I live in southern Ohio, and we have family in Cleveland- making those 3 places most convenient for treatment.
Oh, do we still have questions! Let's start with these:
1) If she's not a candidate for Gamma Knife, does anyone have experience with the other radiosurgical methods- in this size of tumor and at her age?
2) I've seen quite a bit posted about CyberKnife- is this new? Who is doing it?
3) Is there a best center for her to consult with about Radiosurgical options?
4) We have met with, and been impressed by the Cincinnati team of Dr. Pensak and Dr. Theodosoupolis (for microsurgery)- (they treat 40-50 a year surgically), but have not seen much discussion about them on the posts. Does anyone have experience with them to share?
5) She has also been told that her AN has a cysctic component and that it could impact results with radiation. Has anyone ever heard this before?
I'll stop there.
Thank you all in advance for your help, we're really grateful to you all for sharing your experiences!