Fibrous Dysplasia Support Group

So today I got the results for my biopsy and it was not cancer but Fibrous dysplasia. Explains why I got other masses before in other parts of my body that had damage like when my nose got broken age 14, and a yr later they discovered a mass in my sinus next to the side that broke. It stayed for 7 yrs no growing just one day it was gone. They never wanted to open it up since I showed no signs of anything but pain and pressure where it was, but pain was a scale of 3 so not like my recent one on the top of my head which was a 3-4 at first but got above a 10 at the end which is why I had to have surgery to remove the mass. I still don't know which time I hit my head which might have caused this thing but I am assuming it had to have been in the last few yrs. I also have off balance issues and poor depth perception, since I was a child and well I hit my head a lot at least once a day usually not hard to cause any issues just a small tap. but now I am concerned after reading about my new condition. I was offered a helmet but thought it might be silly and a bit much, now I am not sure. As for me I am a full time SAHM of basically twin 4 yr old girls and I am only barely 24 yrs old. I am of Native American and Caucasian decent and a little over weight have had ED since I was a small child and had server abuse my whole life and mental trauma until I was about 19 yrs old. I am not too effected by my past traumas but I worry if this was a result from it all and was just missed. over looked by drs in the past. Sorry if this is a lot of info or TMI. I am just trying to get it out out at once.

Any advice, information other then the mayo clinic site which is all I have seen thus far would be great. My dr never has seen this before only once in a text book in college.

Thank you in advance.
Posted on 05/07/09, 07:05 pm