Fibrous Dysplasia and at the end of my rope!

Ok, first off I don't have foot problem, my problem is in my left tibia. I had fibrous dysplasia when i was 14, had it removed and they put a rod and a pin in place, it returned when i was 20 and was lucky enough to have one of the leaders in F.D. in town and he did the same surgery but froze it this time as well, the going in, take it out, pack with bone marrow thing. Well now i am 24 and I have a lot of medical problems including severe anemia and back problems which I just had surgery on. Well first off, the tumor is back, it hurts to go up and down stairs, AND THERE ARE NO DOCTORS THAT CAN HELP ME! The doctor that did the first surgery doesn't do surgeries because he has medical problems and the second doctor moved to Seattle. I'm at the end of my rope, I called every single orthopedic in town to have someone look at me, pediatric and adult doctors, and I only got one to see me, I went and saw him and he said there was nothing that can be done, it's a salvage operation this time, but he wouldn't do the operation. I have been calling in phoenix and I am still not finding anyone, even at Mayo. I'm so done with this, my questions are, do you know anyone in Tucson or phoenix that treats metabolic bone disorders, i heard that the pregnancy hormone speeds the growth up so i want to know if that is true, and also my husband was researching and he found some articles that say that the F.D. can become cancerous, that it also might be linked with my enlarged spleen and severe anemia. Please, anything you can help me with is greatly appreciated, I just feel like i have been stranded and left to sit while my leg grows and grows til they will have to take it, I don't wanna lose my leg, please help, thank you.