Fibrous Dysplasia Support Group

Fibrous dysplasia is a disease that causes growths or lesions in one or more bones of the human body. These lesions are tumor-like growths that consist of replacement of the medullary bone with fibrous tissue, causing the expansion and weakening of the areas of bone involved. Especially when involving the skull or facial bones, the lesions can cause externally visible deformities.

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Fibrous Dysplasia -Experienced Doctors

My son has been diagnosed with Fibrous Dysplasia.(clivus bone in the skull and left tibia) Because it is rare, I am trying to find Doctors who are familiar with treating this condition and treatments others have had success with.
any input....THANK YOU !

Replies

deleted_user
deleted_user

See a Craniofacial Surgeon. Most major hospital systems have them and any University Medical Center in the U.S. will have one. They usually work out of the Otolaryngology departments. FD outside the skull can be handled by an Ortho doc.
deleted_user
deleted_user

I am in detroit, I go through st. John I see a doctor named Dr. Bone, the best doctor he fights for me. He actually knows what this disease is. We are doing a fundraiser to get research going. If you have any questions write me, I'll let you know what i am on and everything. How old is your son?
deleted_user
deleted_user

"Toozi"-my son is almost 16 and we are currently seeing a pediatric neurosurgeon at Arnold Palmer Childrens Hospital in Orlando. We saw the Pediatric Orthopedic specialist yesterday-he feels that the lesion in his tibia is actually a "non-ossifying fibroma" ( ...gotta google it some more) and felt his pain was caused by a stress fracture so he put a cast on his leg to allow it to heal. The Neuro-surgeon wants to biopsy the lesion in his skull to determine exactly WHAT we are dealing with. but....up to this point we have been told it is FD. I am trying to do research on treatments, their success and doctors so I would love to hear your story! THank you for your response.

"Rogers87"....explain the "Craniofacial Surgeon" I'm not familiar with that specialty as opposed to a neurosurgeon....? My son's lesion is in his "Clivus" bone which, you may know...not sure, is located practically in the center of the skull .

Thank you both for responding
deleted_user
deleted_user

A Craniofacial Surgeon is a specialty of Otolaryngology, specializing in bone lesions (as FD is), bone tumors, plastic surgery involving the skull and face, basically anything to do with the skull and face bones and their deformities. They know all about FD in the skull. Below is a link to the U of F Craniofacial Center

http://www.cleft.ufl.edu/sitemap.html
deleted_user
deleted_user

I have 2.5 year old and treated by UCD Dr. Rab. He has 40 some years of experience in Pediatric Bone Deformity.
deleted_user
deleted_user

I was diagnosed at 19 years of age with FD when I went to the Hospital for Special Surgery with a fractured pelvic bone. I've been seeing them ever since (40 years later). The hospital is located in Manhattan, NY
deleted_user
deleted_user

I am 36 and I was recently diagnosed with FD of my clivus bone. I am also looking for a doctor who specializes in this. I have seen a neurosurgeon who won't even do a biopsy b/c it's too dangerous, and I am looking for someone who can give me a little more insight, or use research on this. Thanks!
deleted_user
deleted_user

Call the Children's Craniofacial Center in Dallas, Tx. The best surgeon in the world is Dr. Jeffery Fearon. He saved my life and my frontal cranial bone!