Sandy
It is very important to find a doctor who knows about Fibrous Dysplasia. You can get a list of doctors from the Paget Foundation who are interested in treating this condition. There is also a support group that is very helpful to me and can be found at http://members.home.net/fdsupport. You can register and chat with others who have this condition. I was also diagonosed with this (mine is in skull. Good luck to you