By Irma, Fibrodysplasia ossificans progressiva, United States, March 1, 2018
My daughter was born weighing in at 9 lbs. When she was born her eyes were slightly off. I thought while moving down the birth canal of her being 9 lbs she had been squished but with time it would normalize. But it didn't. I just figured God had sent her to me like that and I accepted her like that. Never did any of her doctors pediatrician, dentist, ophthalmologist nobody in the medical field mentioned anything pertaining to it. In 2007 at 28 years after having her twins she started with minor headaches until she lost her eyesight. They found a tumor. Referred her to a neurologist. He was the one that actually diagnosed her with it. He said it was in her sinuses and right orbital and the tumor was probably just a mucus plug the size of a golf ball. The neurologist and an ENT specialist removed the tumor and some of the fibrous tissue from the right orbital but mentioning that she would probably lose her eyesight in an eight hour surgery. Everything went well and she regained her eyesight. Ten years later 2017 she had more fibrous tissue removed by a doctor who knows about FD. He performed a orbitalboxostiotomy. But this surgery didn't come out like the first one. With this one she has had complications. They eye was placed incorrectly in the orbit due to the fact that in the ct scan it shows they placed an excess bone at the bottom of the orbit sort of squeezing the eye in its place. Now she has double vision on an angel. We are now having to see an ocular plastic surgeon to take care of her problem. To me as her mother she has always been beautiful which ever way she was born. I love her dearly to the moon and back.