Cherubism

I am unsure if this is the correct forum to post this in but there is no oral surgery or pathology forum.

When I was 6 years old I was diagnosied with neurofibromatosis due to cafe au lait spots and freckling in my groin.

When I was 8-9 years old I developed swelling in both my upper and lower jaw (Myself or my mother cannot remember if it was bilateral or asstmetrical). I had exploratory surgery done and was told I had a giant cell like lesions. The oral surgeron along with an ENT performed 3 additonal surgeries in an attempt to get rid of the tumors. The surgeries were a failure and the growths returned within 2 years to their orignal size.

Along with the tumors I had lost a bunch of my adult teeth and some have grown in crooked or failed to errupt. I also have signifcant swelling and disease of my gums along with multiple soft tissues and reccurent cysts in my mouth. (In the soft tissue, gumline, and hard pallet)

Along with this I also have a giant cell like lesion in my left femur and tibia. ( I have read reports that in rare cases cherubism can occur outside the jaw).

In my late teens the swelling started to go away slowly and now I am only left with a slighlty enlarged jaw line.

My question is do these symptoms sound like rare complications of NF or of Cherubism/ fibrous dysplaisa.

I am also concerned because all the medical texts I have read about cherubism reccomend a wait and see apporach because of the high reccurence rate. I feel I was subjected to medical treatment which I didn't need.

[Jerome Bogin, D.D.S.]

Dear LukeL, I consulted an oral surgeon colleague of mine. His feeling was these were common complications for your condition. It is my suggestion that you seek out a hospital with a dental residency program and an oral pathologist on staff.

[LukeL]

So this sounds like a rare variant of NF or does it sound more like Cherubism. I apoligze, I was unclear on your answer