Hi,
I've been following this forum since diagnosed in 2016 due to incidental finding on MRI. I've benefited greatly from the experiences others have shared. I've also been reading some of the scientific literature every so often. Although I was "symptom free" at the time of diagnosis, I definitely had tinnitus, some face numbness and really felt my head was getting somewhat wonky along with being unusually tired. I have been told my face numbness isn't due to the AN because of its location and it is very minor numbness so I'll take their word for it. I have no balance issues, have excellent word discrimination and very minor hearing loss. I was happy to stay in the watch and wait category. I've been working staying very physically active and eating well (very little added sugars, low grains and lots of fish, veggies and fruits). That has helped with feeling better. However after my last scan, I did have fairly increased growth, especially given the final radiologist's re-measuring of the previous scans. My ENT (does performs surgery) recommended radiation so I met with the radiologist and he recommended 26 doses of volumetric modulated arc therapy (VMAT). Having been on this site, I have mostly seen single doses or maybe up to 5 doses and discussions on cyber knife vs gamma knife, so I was fairly surprised to hear of this recommendation. The argument is that the more frequent lower doses may improve hearing outcome over time. I've read a couple papers comparing VMAT and Gamma knife and the endpoints they measure don't differ markedly, but they don't measure hearing after 10+ years yet. Has anyone out there experienced VMAT or have opinions about it? I don't understand enough about medical physics to evaluate the merits of any of the radiation options.
Thanks!
53 yr old female, Left ear AN:
July 2016: 16 mm AP x 13 mm craniocaudal x 16 mm transverse
Dec 2016: up to 15mm
Dec 2017: up to 15 mm
Nov 2018: 19.2 mm x 18mm x 15.5 mm
Remeasured by final radiologist:
July 2016: 16 mm AP x 13 mm craniocaudal x 16 mm transverse
Dec 2016: 17 mm x 16 mm x 13 mm
Dec 2017: 17 mm x 17 mm x 15 mm
Nov 2018: 19.2 mm x 18mm x 15.5 mm
