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Posts (7)

Feb 7, 2018 · Treatment protocols for fibrous dysplasia and Mazabrauds Syndrome in Spine Health

I have read this information. It sounds about right. I am just frustrated with the lack of communication and care. I have monostotic FD, with Mazabrauds it is usually polyostotic. To have only one spot of FD and one Myxoma makes me very rare apparently. Only 9 documented cases I can find. With the increased chance of cancer I just can’t understand the lack of follow ups. It makes me nervous. I have had much more pain with the placement of the rod.

Feb 7, 2018 · Treatment protocols for fibrous dysplasia and Mazabrauds Syndrome in Spine Health

I suffer from fibrous dysplasia of my femoral neck. I have had a myxoma tumour removed from my thigh as well. Just curious though. I know it is not a common condition, however, shouldn’t a person with this condition be regularly monitored? I had a rod placed in my femur April 2016. It was not very successful. I have had chronic pain since. I also had a small fall before Christmas. Was told by my family physician I ripped off a piece of bone but no treatment was needed. I have emailed my surgeon with no reply. I am so frustrated and confused. I currently have masses in my right foot, rt elbow, lt wrist, and lt hip area. No answers as to what they are. Any insight is appreciated.

Apr 9, 2017 · Fibrous bone dysplasia in Bones, Joints & Muscles

I get chronic fatigue too. And pain. I only have one doctor in my province who deals with FD. He is five hours away. I was diagnosed when I was 45

Apr 9, 2017 · Fibrous bone dysplasia in Bones, Joints & Muscles

Does it give you chronic pain?

Apr 9, 2017 · Fibrous bone dysplasia in Bones, Joints & Muscles

My diagnosis of FD started with a sore hip. They found a fracture and began investigating. With an MRI I was diagnosed with an intramuscular myxoma of my left thigh. Then after more tests they found FD in my proximal femur. I have had two bone grafts and a rod placement. I do continue to have chronic pain. I just wonder if others have the difficulty I have had since my rod was put in.

Apr 9, 2017 · Fibrous bone dysplasia in Bones, Joints & Muscles

Do you have a rod in your femur?

Apr 9, 2017 · Fibrous bone dysplasia in Bones, Joints & Muscles

Does anyone out there have experience with intramuscular myxomas and fibrous bone dysplasia/ Mazabraud Syndrome?