Treatment protocols for fibrous dysplasia and Mazabrauds Syndrome

Posted by lottie785 @lottie785, Feb 7, 2018

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.

Hello @lottie785. I was able to find this information on fibrous dysplasia from Mayo Clinic, https://www.mayoclinic.org/diseases-conditions/fibrous-dysplasia/diagnosis-treatment/drc-20353201. It does mention that once you are found to have this rare disease that regular x-rays are recommended. It also talks about surgical options for treatment similar to what you experienced. Fibrous dysplasia sounds similar to osteoporosis, in your experience and knowledge is it similar?

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.

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