I had my first translab at Evanston Hospital in Illinois. Because the tumor was large and I already had lost the corneal reflex in my eye, the surgeon and I agreed in advance that he would not try to take the whole thing. He wanted to take every precaution to preserve my facial nerve, so the plan was to debulk and then see - either watch and wait, or gamma knife, or more surgery if needed. (I couldn't understand why I would ever want to do that!) Unfortunately, I never got to choose. The tumor came back so fast that gamma knife is again not an option; the tumor is too big for gamma knife to be effective (about 3.5 - 4 cm.) Now I'm scheduled at House with Drs. Brackmann and Schwartz. Dr. Brackmann is optimistic that they'll be able to get the whole thing, or most of it anyway. If they leave a sliver, they'll probably recommend radiotherapy, due to my history of tumor regrowth.
I talked to several of the best AN doctors in Chicago and all of them, including my original surgeons have been very surprised at how quickly the tumor has grown back. Apparently this is very unusual. I don't think its something that most people should worry about, at least not at this rate.
My biggest worry now is my eye. I didn't really understand initially what the big deal was with the lack of corneal reflex. After learning more on this site about eye issues, now I understand. I know that many of you have also dealt with eye issues following surgery. My tumor is pressing on the trigeminal nerve, and I have transient tingling and numbness across the whole right side of my face pretty much daily. So, I worry that removing the tumor will create even more disruption to the 5th nerve, along with the possibility of other facial issues. I'm optimistic and hoping for the best, while at the same time preparing myself for whatever the outcome might be.
