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50 year old with Fibrous dysplasis since age 12

Charles

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I am 50 years old and have had fibrous dysplasia (FD) in my left cheek bone for 38 years. It was first detected as an abnormal bone growth when comparing dental X-rays at age 12. My first operation was at age 13 in which they went in thru my mouth & shaved & removed the fibrous material. The doctors thought it would subside when I became an adult & the bones stop growing in size. But it grew gradually & I went to an Ear Nose & Throat specialist & had CT scans each year. During this time I was presented to a number of doctors who had never seen FD - of all the doctors I have seen only one had ever seen another case of FD. That was a fellow suffering from migraines & it turned out he had a growth on his skull inwards against his brain. He had it removed after years of suffering & was cured of the migraines. I had a second operation at 33 & later at 46. The operations, although they seem scary were not painful. Because the skin was stretched slightly I ended up with what looked like a large black eye which went away in 3 weeks. It has not affected my hearing or vision but has left a numbness because of some facial nerves that have been cut. Psychologically, I have always been conscious of my appearance but the surgeries have allowed me to lead a very successful life (marriage, children jobs, etc.). Please e-mail me if you have any questions that I can help with.

 


   
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