Hi, Tracey and welcome ~
Thanks for posting. Along with the unwanted AN diagnosis, you do have quite a few difficulties to deal with. We'll try to help.
As you know, making the decision on treatment for the AN (surgery, radiation observation) is always a bit daunting and many AN patients have the kind of issues you mentioned, i.e. insurance restrictions, professional considerations, lack of help post-treatment and, as always, financial stresses. You appear to have all of these to consider - but they are not necessarily insurmountable.
There are lots of excellent doctors and facilities throughout the country as good as those on the west coast so it may not be necessary to go out of your insurance network to find a surgeon/radiation oncologist. Of course, you'll have to do some research but I'm sure some of our members living in or around your area (Biloxi, MS) will offer some advice.
Although radiation treatment is non-invasive, with a much faster recovery time, it is not risk-free (or no one would ever have the surgery) and it requires life-long MRI scans because the tumor remains in your head, albeit, essentially 'dead'. The removal surgery clearly carries risks and the recovery time can be lengthy for some - but the tumor is gone. I underwent tumor de-bulking. The neurosurgeon cut off the tumor's blood supply and basically 'gutted' the tumor, then I underwent radiation (FSR) to kill the tumor's DNA. So far (4 years) so good. My recovery was excellent from both the surgery and the radiation but of course, there are never any guarantees.
Although your financial situation is tight, I would strongly advise you not scrimp when choosing a treatment/doctor/facility. This is serious stuff and you don't want anyone performing surgery or radiation on you that isn't very experienced with acoustic neuromas, which are relatively rare. 'Shop' carefully and don't allow your finances to totally dictate your choices. My 'out-of-pocket' limit was $2,500., after that, Blue Cross paid at 100%. However, BC counts anything you owe for the AN procedure as 'out-of-pocket'. I owed the hospital $2,500., but I didn't have $2,500. to give them so I set up a monthly payment plan with them. My neurosurgeon was a caring, compassionate man and, in his words "didn't want me to worry about money". He graciously agreed to accept whatever Blue Cross paid for his services ($28,000.) and I never received a bill from his office. Some doctors will do that - and you may find one.
Your AN is quite small, so you can probably have it observed ('watch-and-wait') for at least another six months. That means an MRI scan every year. It may simply stop growing - it happens. If not, you'll have time to research and figure things out without rushing into anything. Of course, in the final analysis, these are very personal decisions. We can suggest and advise, but no more. However, we're a support site and whatever you ultimately decide, we'll collectively support that decision so please keep us 'in the loop' as to your plans. Thanks.
Jim
