I am unsure if this is the
correctCorrect (new formula) forum to post this in but there is no oral surgery or pathology forum.
When I was 6 years old I was diagnosied with
neurofibromatosisNeurofibromatosis i, enlarged optic foramen
Neurofibromatosis, giant cafe-au-lait spot due to cafe au lait
spotsBirthmarks - pigmented
Liver spots
Measles, koplik spots - close-up
Mongolian blue spots and freckling in my
groinGroin lump
Groin pain
Groin stretch
Jock itch
Swollen lymph nodes in the groin.
When I was 8-9 years old I developed
swellingAbdomen - swollen
Ankle sprain swelling
Breast - premenstrual tenderness and swelling
Foot swelling
Foot, leg, and ankle swelling
Gums - swollen
Joint swelling
Mastoiditis - redness and swelling behind ear
Scrotal swelling
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
ENTAbdomen - swollen
Abdominal tap
Adjustment disorder
Adolescent control test
Adolescent depression
Adolescent development
Adolescent pregnancy
Adolescent test or procedure preparation
Alopecia, under treatment
Alzheimer’s disease
Amenorrhea - primary 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.