Discussions that mention pamidronate

Bone Disorders board

Hi Froggy. I have FD as well, but in my leg.

Most of what I know I have learned online, there really is a lot of great information out there. Or, at least it's as great as it can be for a rare disease like FD.

You should look for "fibrous dysplasia support", there is a place where people with FD go, but it is not the friendliest of interfaces.

If I were you, I'd want to see a surgeon (cranofacial surgeon maybe?) next, and maybe an endocrinologist. There are drug treatments which may help. Since the skull is not a weight bearing bone, maybe those drug treatments (like fosamax or IV pamidronate or zoledronate) will be more helpful and will decrease pain better.

Good luck and keep us posted.