I just had surgery ...and recovering from it...
I am not aloud to use my leg till half may...and than they will check it..
Still on morfine, cause the surgery in the bone...arrgghhh it hurts a lot..
I have or I schould say had FD in my femur.
greetssz Ina

First of all, I'm sorry this is happening to you.
I have had surgery three times, because it was going to press on my optic nerve and make me blind. They took out about 70% of it.
You shouldn't worry about your sons getting it. It's rare.

Best of luck to you and your family!
-KK

I just had a 3 cm mass removed from my skull and let me tell you I dream again I am less bitchy and snappy. I feel better and now I am worried because I now found another one near my brain stem I just hope this one doesn't grow large as the last one other wise it will be a much higher risk surgery to remove it as my last one finally was getting into the center of the brain which is not good. The hot spots are a sign there is activity on the bone because I had a BIG old black one where my one mass was. They could be a sign of more fiboros from what I under stand or just weak spots if I read correctly when reading about hot spots on CT's. I had 1 mri, 1 ct, 1 ct with contrast, 1 mri with contrast, 1 bone scan with contrast and many other tests pre surgery. My dr is with a San Diego DR in Kaiser Premente and they have never seen or really heard of this condition either. My dr said he once in college saw it in a textbook.

http://www.webmd.com/a-to-z-guides/bone-scan

http://www.nlm.nih.gov/medlineplus/ency/article/003833.htm

http://yourtotalhealth.ivillage.com/bone-scan.html

All are different sites with info on bone scans and hot spots, shift threw using the ctrl button at same time hit f key and it will bring up the find box type hot spot and you will find info on what they mean. As for the condition you and have both recently found you we have I have no info as of yet on it. Good luck and I am sorry for you pain and health issues and tiredness.

I am barely 24 with two 4 yr old girls both with special needs so I understand. I hide it from everyone have since before I even knew what what even barely going on when something showed up on an mri. I have my break downs of crying but no one knows of them or sees them 90 % of the time. It's hard to be unsure of something because it increases fear and worry. Remember worry leads to stress, stress makes you weak and tired and can kill you. So take care of your self please. For your boys sake, remember not to stress/ worry so much. HUGS I am here if you ever wanna talk. Also yes it's rare but not genetic they are unsure whom and how one does get it but they know it happens in uterus.

There is light at the end of the tunnel. Do not give up hope. I was diagnosed with craniofacial fibrous dysplasia of the frontal cranial bone when I was 21 and I am now 29 and feeling better than ever because I had the bad bone removed at the Craniofacial Center in Dallas, Tx by Dr. Jeffery Fearon. He is the best surgeon ever and my angel. My best advice for you is to travel and find the best doctor you can, even if he is far away and to deal with your depression by going to therapy and church and reading the Bible. I connected with the book of Job when i first went through this and it took me about 4-5 years after my surgery to deal with my depression and learn about coping mechanisims. I still have issues in life because of it but feel blessed to be a stronger person now and to be able to have a normal and happy life. I will be praying for you and your family. Love from Texas!

I am now 13 and have known about what i have for 2 years now. I have it in the skull and I was wondering since I follow an active lifestyle, playing sports and what not, if that will have any affect on my problem. If there are any symptoms that will make it worse in the long run?