Hi, dlbenz:
I'm sorry that you have an acoustic neuroma but glad you discovered this great website and decided to post on the forum. I think you'll find it invaluable for practical information as well as a good place to vent (we all have those days) and/or stay connected with folks from all walks of life, from all over, including Europe, Australia and elsewhere who can empathize with your situation.
I'm a retired radio broadcaster. My AN was discovered just a year after I left the business, so it wasn't a factor. I'm deaf in one ear but it was a
very gradual loss . I attributed my loss of hearing to listening through (usually loud) headphones for hours a day for 25 years. I did wonder why only one ear was affected but shrugged it off until other symptoms manifested themself (imbalance, intermittent stabbing pain on the 'AN side', loss of my sense of taste). When I finally saw a my primary care physician, he thought my taste loss was possibly a thyroid condition. Tests ruled that out so he cut to the chase and ordered an MRI. The scan showed a 4.5cm AN. I quickly located a great neurosurgeon and had debulking surgery less than a month later. Three months after that, I underwent FSR (26 treatments) which were successful, as my signature (in italics, at the bottom of this post) shows. Radiation is very sophisticated these days. My radiologist said that I might lose some hair where the beams were concentrated. Then he said he had re-adjusted the dose and I wouldn't lose any hair. I didn't...and had no problems with the radiation, either, unless you count boredom. My hearing is still absent in one ear and I doubt it will be coming back. However, my neurosurgeon still checks it during my semi-annual visits, which is encouraging,as the nerve wasn't cut. Still, I've fully adjusted to SSD (Singe Sided Deafness) and it isn't a major impediment to my lifestyle, just a minor annoyance, at most. Its amazing how we can adjust to physical changes that we can't control.
I'm
not a physician but you sound like you'll be a good candidate for radiation (Gamma Knife?). If so, you probably already know that it's non-invasive and quite successful in stopping and eventually killing acoustic neuromas. Some level of hearing is often preserved, although that can not be guaranteed. You'll need to gather more information and consult with doctors/radiologists and so on. It's tedious but necessary. Fortunately, AN's tend to grow very s-l-o-w-l-y, so there's no rush, except for your own sense of urgency in dealing with this pesky tumor. We may be able to help. As someone who had a successful outcome to surgery
and radiation I advise you to choose your surgeon/radiologist very carefully. There should be some very good doctors, familiar with acoustic neuromas, in your area. As another poster noted, you can always have the radiation performed in Manhattan, if necessary. It probably won't be necessary but a nice option to have, all the same.
I wish you the best and hope you'll stay connected to this site snd forum.
Jim
