Thanks for the feedback Cheryl and Tammy and Christine!
I am very scared and this is so new so feedback really means a lot and is very helpful.

I have an appointment next week at Johns Hopkins. I hope they can tell me something to give me more hope than what my doctors here said (even though I do think my current doctors are very good).

It seems that the quality of life for those that have this surgery can vary greatly and while I am sure some of that is due to each individual patient, I am hoping that there may be some surgical techniques that yield a better chance for better speech, etc.