Hi, Samantha:
As I always say to new visitors, I'm sorry you have to be here but glad you found the site and the forums. Thanks for
your kind words, too. We do care and try to offer the best practical advice we can.
I'm one of the 'lucky' AN patients with a fantastic outcome that
Bruicfer mentioned. After developing various symptoms, including loss of taste (and rapid, unwanted loss of weight) notable disequilibrium and sudden lethargy, I underwent an MRI scan and was diagnosed with a large (4.5 cm) acoustic neuroma tumor in May of 2006. I underwent microsurgery (retrosigmoid) a month later to 'hollow it out' (and cut off the blood supply) and came through that with no real complications. Home from the hospital within 5 days, driving within 2 weeks and feeling pretty good. I'm retired so work wasn't a problem but I believe I could have handled with my former desk job just fine.
My neurosurgeon partnered with a radiation oncologist to 'map' my follow-up radiation treatments, 26 in all, spread out over 5 weeks, that began in September of '06 and ran through mid-October. This approach is known as
Fractionated Stereotactic Radiation, more commonly referred to as 'FSR'. The goal of this two-tiered approach is to is to reduce the size of the tumor while preserving the vital facial/cranial nerves, then use low-dose radiation to kill the tumor's DNA. The result, as you may know, is called necrosis, or cell death. My last MRI (June 20th) showed significant shrinkage of the remaining tumor and definite signs of necrosis. My neurosurgeon was beaming and called me his 'star' AN patient. I humbly accepted the accolade.
Your boyfriend, Adrian, may have a similar option and you both should discuss it with a physician. His tumor is too large for radiation, alone, but as you can see, there are other approaches the doctors can take besides 'surgery only'. Surgery can sometimes cause residual problems for the patient if the tumor placement necessitates disturbing any facial nerves in order to remove all of the tumor, but I trust you're familiar with that risk.
One caveat: we're all individuals with different genes. Just because I had an excellent outcome with the surgery/radiation approach, no one can guarantee that will automatically be the case for anyone else, although I personally believe this approach makes sense for large AN tumors and, obviously, my very experienced neurosurgeon agrees. As others will likely advise, physician experience is paramount in successfully treating AN cases. As this is a relatively rare condition, not that many surgeons are familiar with it. Some neurosurgeons, very experienced at operating on spines, are really behind the curve in treating AN patients. This is why you
must inquire of any potential surgeon, how many AN cases have they operated on? Anything much less than a number safely in the hundreds is probably too low. Do not be intimidated by
any doctor. This is Adrian's life and future at stake and he must make the decisions and not be pushed into anything, even if he has to act fairly soon. I know you'll be with him all the way and that is a big plus for Adrian. He'll need an advocate in the hospital and later, while recuperating. Life may become somewhat difficult for awhile, but I trust you two will ride it out. I pray you and Adrian will make wise decisions based on knowledge, not fear. Remember, an acoustic neuroma is a problem but it's not malignant and it
is operable - and surmountable.
I hope you guys stay strong. Feel free to post here as often as feel necessary. We really do care.
Jim 
