I am glad I ran into this post. While I do not have any of your personal answers I do completely understand your fears. We are so alike. I had 13 hrs of surgery eight years ago. They discovered mine was growing on my facial nerve too. My left face was totally paralyzed but slowly recovered to nearly normal. I still have eye blink issues and the corner of my mouth has a slight droop. They discovered mine was re-growing about 6 months after surgery so, here I have been waiting and watching for eight years. My last MRI confirmed that treatment was needed again and I felt the same dilemma you feel now.
This time I researched and spoke to two different professionals. The second one asked me why I assume a second surgery would be less harmful than the first? He said that he has only seen GK that destroyed a facial nerve one time and that was from swelling. Anyway, his words made sense to me and since he was in fact a "neurosurgeon" and recommending another specialist instead also helped me decide to try GK.
I underwent the treatment last Wednesday. We began at 7:30am. At 1:30pm I walked two blocks in downtown Chicago to have lunch with my family! I admit the frame part was not fun but it isn't unbearable and they do make sure and use lots of numbing meds. I figure 15 minutes of discomfort by far out-weighs the days of pure misery I experienced with surgery.
I do understand that only time will tell how well this works for me but, I have already invested years of time. Here I am three days later...my eyes are swollen and sore, I am tired, my scalp is numb again, my tummy hurts from the steroids, but I am walking, talking, typing, eating normally, and have "so far" no new or worsening problems. I haven't even taken a Tylenol.
I wish you all the luck in the world with your decision and remember that you have a support team right here that can almost always help find whats right for you.
My best to you,
Sherry
