Hereditary Multiple Exostoses?

My mom has Hereditary Multiple Exostoses and she has a big tumor in her pelvis area and we all can feel it but the pain is becoming so intense for her we have been to Shands in Gainesville Florida almost four times now and they tell her the same thing they tell her that there is nothing to do and i don't believe them. there are specialists for this disease there and no one has given us an answer that we can accept. My mom is only thirty-six and the only real option they have given her in the last year is to have her leg amputated but no one wants that especially her and i love her too much to watch her go through this pain much longer.