The vast majority of people with fibrous dysplasia of the skull can be managed without any particular surgical intervention. The key part of treatment is often simply monitoring the condition to ensure that it does not produce symptoms or cause threat to neurological function due to progression.
Overall, the sort of problems that can merit consideration of surgery in fibrous dysplasia fall into 2 broad categories. The first of these is cosmetic if the deformity of the skull causes marked facial asymmetry. There are various ways to restore the symmetry of the face with surgery. This can include re-contouring of the skull through specialised techniques which your surgeons have experience of. Alternatively, parts of the skull can be resected and replaced with titanium or other implants to restore a normal contour. Clearly, the need for such significant surgery for a cosmetic indication needs careful consideration but your surgeons will very gladly go through this carefully with you.
The other category of problems requiring surgical intervention is threat to neurological function. Whilst this is rare, it can occur if the fibrous dysplasia involves the skull base and in particular may cause narrowing of the apertures in the skull base through which various nerves run. Professor King and Mr Rutherford have experience of examples including loss of vision or impairment of the facial sensory nerve causing numbness and pain. In these instances, surgery can be done to decompress the respective neurological structures.
Other than surgery, treatment for fibrous dysplasia is largely unproven. It is likely your management will also involve an endocrine expert and they can use medical therapy particularly if the bone changes in fibrous dysplasia are causing localised bony pain. However, this sort of treatment is not routinely prescribed in fibrous dysplasia.