Hello, Alicia ~
I'm sorry you have an acoustic neuroma diagnosis but glad that you sought information on the internet that led you this website and these forums.
I wanted to let you know that many AN patients that undergo surgery have good outcomes. It isn't all gloom-and-doom. I know, because I'm one of them - and there are many more that frequent these forums. Like you, I was diagnosed with a large AN that measured 4.5 cm on the MRI scan and was closer to 5 cm, once the surgeon got to it. It was pushing - hard - on my brainstem at the time of my diagnosis and the neurosurgeon was alarmed. I was extremely fatigued most of the time, which was a bad sign. My surgery was scheduled for a week later, but actually took place 3 weeks later due to various factors I won't go into, now. My symptoms started slow - my hearing in the AN-affected ear slowly diminished to nothing over a 5 year period - but other symptoms grew very pronounced within a 6-month period. I lost over 30 pounds due to loss of taste and my balance was terrible. I almost fell quite a few times, just walking down the stairs in our home. When my now-worried wife finally persuaded me to see our doctor, he sent me for an MRI and my tumor was discovered, big as life. I was 63 years old at the time and just recently retired. Naturally, I was frightened. When I discovered the tumor wasn't malignant and wouldn't kill me, I became annoyed that this thing was going to disrupt my life.
I did the usual internet research and quickly realized that facial paralysis was a real concern with this surgery, so when I consulted with the neurosurgeon I eventually engaged to perform the surgery, I expressed my fears about facial nerve issues. He, a surgeon with 30+ years od AN removals, presented me with a two-stage approach that took longer but was proven very effective in other AN patients and, best of all, spared the facial nerves. He proposed that he would 'de-bulk' the tumor, basically hollow it out and cut off it's blood supply, leaving some intact. This would likely kill it but then, after a 90 day 'healing period', I would undergo what turned out to be 26 FSR (
fractionated stereotactic radiosurgery) 'treatments', which were 'mapped' by my neurosurgeon and a brilliant young radiation oncologist he teamed with. The FSR sessions were performed on an outpatient basis, were each about 30 minutes long and accomplished over a 5-week period, Monday through Friday with weekends off. They were uneventful and painless. I suffered no ill effects and drove to and from the hospital, a 64-mile round trip.
The good news is that I emerged from the AN de-bulking surgery with no complications. No facial nerve deficits or much of anything else. I had a relatively quick recovery and today, almost 3 years later, I'm fine. My last MRI showed definite tumor necrosis (cell death) and some shrinkage. I'm almost looking forward to my next MRI, this summer. I feel great, considering I'm now 66 and had major brain surgery. We enjoyed a very busy 5-day stay at Disneyworld® last year. I enjoyed all the rides, including
Space Mountain and
Test Track (for Disneyworld veterans). My point is that, problematic as an acoustic neuroma is, it
can be surmounted and your life return to normal, as mine has. Oh, I have a few very minor deficits but nothing that really impacts my life, which is quite satisfying.
I'm glad you've found us and trust that you'll stay connected here with folks that understand your situation because we've experienced the same thing. We 'get it'. We also want to help and support you in any way we can, so please let us. You're among friends, now.
Jim
