Evan,
I am NOT going to House and Ear Clinic because they don't do endoscopic removal. It's an excellent institution and in fact if I wanted a traditional approach (they recommended translab), I would have gone there because I have a recurrance and they have the most experience wiith it. I have decided to take my chances with endoscopic removal at SBI (look for thread Skull Base possibilities in Microsurgical Options for what they do).
I visited Dr. Roland and Dr. Golfinos at NYU (they work together as a team) and liked them both very much; they are personable, easy to talk and you can even e-mail Dr. Roland and he answers your questions. However, they both seemed somewhat intimidated by my tumor commenting that "it's not small" as well as some other things. They suggested translab just like HEI but I got a feeling that my chances would be better at HEI as they have more experience with recurrences which is what I have. HEI also produced references which I later realized was totally unnecessary because there are so many people on this forum who had surgeries there, HEI's record speaks for itself. NYU team did not produce any even though I asked them three times during the course of 2 months which is the span of time between seeing each of them. NYU quoted the same numbers as HEI in terms of facial nerve preservation , regrowth, etc. but where is the proof? Do those numbers reflect their experience?
Then I visited Dr. Sen. He impressed me very much. He had a different position: my tumor is not big (notice the difference), with the tumors this size, he has not seen a paralyzed facial nerve or swallowing difficulties in 5 years. There was no sales pitch of any kind, just pure information. I did not ask him for references directly but I read about his work and there were patients with meningioma on their support group who travelled from all over the US to have the surgery done and were very pleased. Meningioma is also a benign tumor but more difficult to peel off the nerves because it has a broader base. Dr. Sen has also done a lot of NF2 tumors which are more difficult, larger and recur faster. So, I was confident that he was extremely competent exactly in the area that I needed.
Finally, I learned about endoscopic removal and had 2 consults there and chose the surgeon. So, that is my story.
Evan, research, research and research. Your situation is completely different than mine. You have a small tumor, not a recurrence, so your surgery should be less risk overall. Visit as many doctors as you can. Dr. Roland is a good doctor to talk to, as well as DR. Sen. Another must for you is to get an opinion from HEI and they do it for free. Two endoscopic surgeons (Dr. Jho and Dr. Field) will do it also. Radiation can be an option for you as well. I spoke to Dr. Isaacson at Columbia Presbyterian who does Gamma but decided against radiation alltogether. Leave no stone unturned and only then you will allow yourself the best opportunity. I am surprised that you already have some paralysis with the tumor that is still small. Some doctors feel that if a small tumor casuses facial issue, it is possibly a facial neuroma, not acoustic. So, be sure to ask.
Best wishes, keep us posted and if there is anything I can help you with, e-mail me.
Eve
