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Hi I'm 37 and I was diagnosed at the same time when I found I was pregnant 11 and a half years ago while being pregnant...Mahdi the operation at 5 months pregnant. I've tried every possible treatment as far as pain tolerance and they finally suggested a biophospinate via intervenors they the cancer clinic and monitoring thru the oncologist, it was horrible at first I was soo sick but after 3 months it started to stabilize and the pain was reduced , they put me on an antidepressant that is used for nerve reduction which works really well with it. I still have much difficulty at times but it improved my pain reduction by 60 percent... I was approved of disability as well as I could barely move n the pain was intolerable , I am a stay at home mom of two children and a step daughter and still struggle day to day. They only said I have it in my hip n femor but I'm pretty sure it's in other places as I suffer with constant joint pain in other areas.. I hope this information has helped feedback would be lovely
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Replied on Thursday, March 7, 2013 11:34 AM
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 Lauzz94 (Guest)
I was diagnosed with FB in my skull when I was 8. As the years went on the bone began to grow and before I knew it I basically had what looked like a golf ball sticking out the side of my head. It caused severe pain and constant black eyes, as the bone would put pressure on my eye. When I was 16 I eventually got an operation for them to carve away the excess bone. Im 19 now an the pain is still there, and I feel like the bone is growing back. My eye is left slightly drooped, which makes it looked constantly swollen. And the worse part is there is nothing anyone can do.
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Replied on Sunday, August 4, 2013 2:53 PM
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I was diagnosed with FD in my jaw and base of skull about 15 years ago, i am now 45. Apparently the base of skull growth in inoperable but thankfully appears to have burnt out and has remained unchanged in 10 years. the growth in my Jaw grew initially after a biopsy which caused pain and tooth/bite deformity but has remained stable in 10 years. I am currently exploring the option of having the growth reduced via surgery and then have my teeth straightened and my bite corrected. I have been told conflicting stories about whether the mass will grow back. one doctor told me it can and the other told me that it would if it was still active. I have been told that people dont notice it and I shouldn't worry about it but it really affects me. Has anyone had surgical treatment that can offer me some advice.
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Replied on Wednesday, April 6, 2016 5:45 PM
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