Hi Steph, thanks so much for the reply! I am so glad you found this forum early, and that you have connected with someone in your area.
As far as the tentacles, that was just a description they used for my tumor. It had branches, like an octopus, that wrapped around the nerves, which made the surgery a lot more complicated. But that is a very unusual situation which my surgeon had only seen a few times out of several hundred.
I wouldn't be concerned about the similarity in our tumor size. As I'm sure others have said, tumor size alone isn't an absolute predictor of outcome. And it sounds like you have opted for a very experienced surgery team, so you're in good hands
I returned to work after four months, part time for the first couple of months, then full-time for almost two years now. It has been challenging. I work as an engineer in an R&D environment, and for eleven months I could not close my right eye. So I had to keep a lubricant on it, sort of like Vaseline, which effectively made me a one-eyed engineer for a while. I also struggled with fatigue. HOWEVER, I was not in good physical shape prior to my surgery. If I could change one thing, I would have delayed my surgery by three months and hired a personal trainer to totally kick my behind into shape. In my experience, exercise not only helps with balance, but also with the fatigue issue. That's why I am so glad to hear you are an avid yoga person -- you must be in great shape, and you know how to use yoga breathing to calm yourself.
Oh, you asked about my surgery. I first consulted a very well-regarded local neurosurgeon. He had some experience in AN, but he politely declined my surgery and strongly encouraged me to go with someone with extensive AN experience, which meant travel outside my immediate area. Actually, he flat out told me not to let ANY local surgeon touch this, because we are in a small city and none of the local surgeons have much AN experience. He recommended MUSC in Charleston, SC, and Duke University, and they used the suboccipital approach, hoping to preserve my hearing.
I will tell you that, although I experienced some complications that we had hoped to avoid, I have no regrets other than being out of shape going into surgery. Yes, I have partial facial paralysis, and lost the hearing in one ear, but I learned it's not the end of the world. So many great things have happened as a result of my "adventure in neurosurgery". I have met many new and dear friends, including my facial/speech therapist and my pilates instructor, and I am now closer to many of my "old" friends. My faith has deepened, and doors have opened to share my faith that would not otherwise have existed. I gained a deeper appreciation of my husband and of the depth of his love for me. I even met the band Switchfoot -- their song "Dare You To Move" is my theme song -- and got to tell them how much their music helped me in my recovery (you should have seen the looks on their faces -- priceless!) This whole experience forced me to SLOW DOWN and enjoy the ride.
Thank you again for your kind words. Please feel free to contact me if you have other questions, or just need to talk. I am confident that you will have a successful outcome, and that you will look back on this as a bump in the road. Hopefully you will even find blessings in the experience, as I did.
Oh, and I highly recommend that you find a theme song if you don't already have one. You can borrow mine if you'd like!
Mary
