I have had FD since child hood but the condition was not discovered until I was in a bad motorcycle accident and amazingly did not sustain any noticeable head trauma. Due to the severity of the accident (and the fact I was conscious - against all odds) the doctors did a full body MRI. To their amazement my skull was abnormally thick and not broken or fractured. This discovery led to mass excitement in the emergency room and eventually to the second best neurosurgeon in the military.
The year was 1993 and I was twenty years old and not ready to face reconstructive surgeries. Especially given the fact that the first doctor I saw was way to abrupt in his description of the surgical options. Since the medical records from these first visits were lost by the military I do not have a baseline of the growth in 1993 but I know the skull was thick enough to sustain a 40 mph impact with a retaining wall. Ironically FD saved my life.
I met Yvette later in 1993 and we married in 1997. I did not seek medical care for FD from 1993 until 2005 due to the fear of having doctors "crack open my skull and scrape it out". During these years I self medicated with alcohol (a story for another time). In 2005 a personal tragedy led Yvette to a counselor and she recommended a doctor for Yvette to visit. Once Yvette saw Dr. K he diagnosed her life long pain condition that no other doctor had diagnosed in 30+ years. She learned to trust and like Dr. K and finally convinced me to visit the doctor. Dr. K was able to win my confidence and to start a series of tests and specialists visits to determine what options were available to me.
I have seen various specialists including ENTs, pain management, and neurosurgeons. In September of 2008 I had facial reconstruction surgery in hopes that some pain would be alleviated if the nerves in my scalp were deadened. At this time the external bone of my skull was shaved and reshaped. It was also determined at this time that going into the skull was too risky as the bone is embedded in my frontal lobe and I have no desire to receive a frontal lobotomy. Since September of 2008 I have worked with Dr. K to maintain a pain management treatment and you can read more about that in my other blog entries.