Now that you've been properly diagnosed and past the initial shock, you will want to be operated on by the most competent and skilled surgeon that you can find. You may want to contact teaching facilities to locate surgeons with the most experience with your type of surgery. Seek out those that treat patients like you everyday. If you are near NY, Dr. Mark Urken would a great choice. Your goal should be a great outcome with the most function. Ask how often they operate on similar patients. If you don't get the feeling that this is just routine for them, ask whom they would go to if facing the same diagnosis. You may also want to have a plastic surgeon assisting on the surgery. Become an advocate and don't be concerned with "offending" anyone. The decisions being made will be some of the most important and difficult of your lives. Don't loose your focus. Make educated decisions which will lead to higher comfort levels for all. All my best for a great outcome. We all know what your going thru and will be hoping for a great result. You may want to check www.spohnc.org for some good contacts.
Best Regards,
Rob J.