Thank you all for your comments...I don't know if you looked but I have been skulking around this site for about two months, so many of you have posted many times, I feel honored that you took the time to write to me...
It's our pleasure, Marla.
Sometimes I feel like that is me wimping out, and then I feel like I can suck it up and deal with whatever the outcome is...then I talk to people on this site who are literally disabled from their surgery, either physically or emotionally, and I wonder how I would survive that way, and what quality would my life be.
I don't mean to sound melodramatic, but I haven't seen this conversation anywhere, and I don't know what the answer is.
Neither does anyone else.
Opting to undergo necessary brain surgery is certainly a momentous decision but one that only the affected individual can make....and of course, none of us can predict the future or know in advance how we would handle facial paralysis, excruciating headaches or other post-op complications. I sure didn't. I was fortunate in one respect because my neurosurgeon was alarmed at the size of my tumor (4.5 cm, closer to 5 cm when exposed during the surgery) and I underwent surgery within a few short weeks of my diagnosis. Had a complication not arose, I would have had the surgery within 10 days of my diagnosis. Still, I didn't have a lot of time to fret and ponder the possible negative consequences of the operation, although my internet research showed me that facial immobility, headaches and other issues could
be something I would have to deal with, post-op. Naturally, this concerned me, just as it concerns you. I expressed these concerns to my neurosurgeon and he assured me that "his AN surgery patients didn't get post-op headaches"
. The doctor explained that he used a procedure that avoided bone dust - the usual cause of post-op headaches - getting near the nerves that would be exposed. He also opted to perform a partial resection of the AN (he called it 'debulking') intended to cut off it's blood supply and reduce it enough to be radiated and "finish it off".
This approach would reduce the likelihood of facial nerves being excessively disturbed, which can lead to facial paralysis. The surgery went splendidly and my recovery was fairly rapid. I underwent 26 FSR treatments 3 months later (under the joint supervision of my neurosurgeon and a very talented radiation oncologist he worked with). The radiation treatments (about 40 minutes each) were uneventful - I drove to and from the sessions, a 60-mile round trip, every day. No facial paralysis or headaches and now, over three years later, I'm fine. Oh, I'm still SSD, my balance isn't exactly 100% but basically, I'm good - and very grateful for my successful recovery. I sincerely wish the same outcome for every AN patient.
For me, reading the messages from post-op AN patients struggling with facial issues and/or headaches, vertigo, etc is a daily reminder that not every AN surgery comes out well and some AN patients have a long, hard road back to normalcy or something that approximates normalcy for them. While my heart goes out to these good people and I try to offer encouragement to them, I sometimes wonder how well I
would have dealt with these problems. I believe that I would have been O.K. (but not especially happy) because I would have gone into surgery knowing they were a possibility and I would have done everything in my (albeit, limited) power to avoid them, as I did. Most folks with post-op issues surmount them, eventually, and time really does heal, as some of our member's photos demonstrate quite clearly. AN surgery has progressed quite a bit and I believe there are fewer cases of post-op complications than was once the norm.
Still, it is
a risk - but one that thousands have taken - with successful outcomes. How you
would deal with these is an unknown, as much to you as it is to me. I believe that adversity brings out our character and that's obvious by the kinds of triumphant attitudes we see in the messages from post-op AN patients struggling with their facial immobility or other vexing issues but savoring small victories and looking ahead to better days. I love these folks and remain an active, working member of the ANA site and it's forums to help and encourage anyone who is facing AN surgery with foreboding or struggling with post-op (or post-radiation) issues.
Frankly, because AN surgery has a lot of 'unknowns' (regarding outcome and possible complications) it's relatively easy to convince yourself that it's too scary to even contemplate and that ignoring the AN is the easy way out. I submit that is a fallacy. The tumor will very likely continue to grow causing you more and more problems and definitely affecting your quality of life in very adverse ways. As any doctor can attest, left completely unchecked, an acoustic neuroma has the potential to be fatal, as it can intrude on the brainstem to the point where life-critical functions, such as breathing, can be stopped. At the time of my diagnosis, my large AN had pushed hard against my brainstem and was , in my doctor's words, becoming "life-threatening"
- if not addressed, soon. He wasn't making idle conversation. This was the reason he was very anxious to remove (reduce) the tumor. Once he did, my symptoms, (SSD, extreme lethargy, loss of taste sensation, dizziness, stabbing pains at the AN site), disappeared. The SSD remained because the hearing nerve had been severely compromised for so long (years) that it had been rendered inoperative and beyond saving.
Of course you're scared of the serious surgery AN removal entails and the specter of post-op facial paralysis and other issues can be daunting. I think everyone reading this thread can relate to that. However, I know that we all hope that fear will not be allowed to control you to the point where you are unable to move forward and have the tumor addressed. Courage is not the absence of fear but having the fear and going ahead, anyway. We can only encourage you to find that courage and we can admit that doing so is a real challenge. I believe you can meet the challenge and do what has to be done to deal with this unwelcome intruder called an acoustic neuroma. Some of our members have excellent outcomes and are driving, working and even doing pretty strenuous physical activities within a few months or even weeks of their surgery. I'm retirement age and did quite well after both surgery and radiation. I think the odds of you doing well, too, are good but the decision to act remains in your hands. You'll have many supporters here as you move ahead with surgery and we'll be sending up prayers and offering you good vibes all the way. Still, the next step is up to you. We can only encourage and support - and we guarantee to do that. Please try to surmount your fears and take control of the situation, knowing we're with you. Jim