dsnyder ~
Hi and welcome. I'm sorry you have to deal with an acoustic neuroma but glad you discovered the ANA website and decided to join the discussion forums.
Previous posters have offered a pretty good synopsis of the AN surgery experience. As you can see from their posts, because we're unique and every AN situation/patient is different, there is no template for AN surgery experience. However, I'll add my experience to the mix for whatever that information may be worth to you.
I was 63 and in good health (no heart, spinal, digestive or joint problems) at the time I was diagnosed with a large (4.5 cm) acoustic neuroma. I had gradually lost all hearing in my left ear over the preceding 5 years but accepted it as 'aging' and connected it to my former profession as a radio announcer. I adjusted. However, over a six-month period preceding my diagnosis, my balance noticeably deteriorated, my sense of taste pretty much disappeared along with my appetite, resulting in drastic weight loss (30+ pounds) that alarmed my wife, who was puzzled as to the reason I no longer seemed to enjoy her good cooking. During this time, I experienced intermittent sharp pain on the side of my skull and, along with all these symptoms, I was growing very lethargic. I procrastinated calling our PCP but my wife, being eminently practical, called for me and made it clear that I was going, despite my (foolish) protestations that 'I don't need a doctor'. She realized that I most certainly did, even if I wouldn't admit it and did the right thing, as she usually does in these situations. Our friendly PCP guessed my loss of appetite might be related to a thyroid condition and sent me for an (unpleasant) test to check that out. The results were negative. His second guess (as to why I had lost my sense of taste) was a possible sinus condition, which necessitated my getting an MRI scan. Bingo! My sinuses were fine, thanks but there was this big, fat blob on the MRI scan that was quickly diagnosed by the doctor as an acoustic neuroma. He said it was far too big for radiation treatment and that I would require surgery. Like you, I was somewhat apprehensive, even though he assured me the tumor was almost definitely benign and that it was operable. I did the internet research (and found this website and a host of friends) and after one frustrating consultation with a local neurosurgeon who seemed intimidated by the size of my AN, I found a compassionate, very experienced, respected neurosurgeon in New Haven, Connecticut, about 30 miles from my home. He had been operating on acoustic neuromas for over 30 years and was very attentive to my concerns regarding facial immobility, (sound familiar?) although hearing loss was not really an issue for me at this point. He presented me with a plan to partially resection the AN, cut off it's blood supply and, in effect 'gut' it, making it much more vulnerable to radiation. After a 90-day 'rest', I would undergo FSR (26 seperate sessions) intended to destroy the remaining tumor's DNA and, in effect, kill it.
Long story short: everything went according to plan...the surgery was a resounding success. The tumor was reduced to approximately 2.5 cm and it's blood supply severed. I suffered no facial problems. My balance was a bit shaky but I quickly regained 'serviceable' equilibrium. I did balance exercises and a lot of walking post-op and now, over 4 years later, my balance is probably about 85% of 'normal' and not an issue for me. My appetite returned within 48 hours of the initial surgery and I've even managed to retain a healthy weight because, after the loss of appetite phase, I realized that I had been eating portions that were too large and a lot of things that, cumulatively, added pounds...so I changed my eating habits.
To be more specific in regard to your query about pre-op procedures: I believe each doctor/hospital has their own protocol for AN surgical patients but I underwent a host of tests including a bone density scan, lung tests, heart tests and a second MRI just before the surgery. I 'passed' all the pre-op tests with no problem. I assume most healthy folks do. Post-op is different. Each AN surgery patient has a slightly different experience. Generally, you're extremely fatigued the first three days after the operation and just want to sleep and rest. Well, I did. Because my surgery was complication-free I cannot address the possibility of how one functions if facial or other issues are present, but others can, and will, I'm sure. In my case, by Day 3 I was sitting in a chair (a big deal) and by Day 4 I was walking the hallways (on my wife's arm, at first, then solo)) and by Day 5, I was chomping at the bit to be released and get home. They let me go that day and my recovery proceeded apace. I estimate that it took approximately two weeks at home to feel relatively normal and two months post-op to feel I had regained full normality. Actually, a few years post-op, I realized that I felt even better so, in reality, total, 100% recovery (or close to it) is likely measured in months, not weeks. Again, this is subjective and only one AN patient's experience. The maddening part of approaching AN surgery is the fact that, unlike some more routine operations, the results can never really be determined beforehand. In short, there are no guarantees. Some AN surgery patients do experience complications, occasionally severe and life-altering but most post-op problems are temporary. I experienced double vision for about 3 days immediately after my surgery but it disappeared and never returned. This kind of thing is quite common. However, even with the more troublesome post-op issues, such as facial immobility, there are therapies and operations that can alleviate and sometimes cure the problem. Headaches can be an issue and are for many but again, not all AN surgical patients. Just like Jan ('leapyrtwins')), I never experienced headaches before or after my surgery so that problem is not a given. As I stated at the outset of this overlong post, we're all unique and there is no template for the AN surgery experience. What's crucial is finding a doctor with lots of successful AN removal experience. As for your doctor's comment about radiation causing the AN to become cancerous, his information is apparently out of date. Although the risk exists, it is minimal. However, many doctors do not like AN patients that are under age 60 to undergo radiation treatment because the risk exists, even if it is almost infinitesimal. That is your doctor's call - and yours to accept or reject. However, many of our members have undergone radiation to treat their AN and had great success. Frankly, had my AN been small enough upon diagnosis, I would probably have chosen radiation over surgery, although I never had that option.
I'm confident that you'll receive more replies to your very pertinent questions. They'll probably more concise than my response and I trust they'll all be helpful.
Jim
