Connect
Treatment protocols for fibrous dysplasia and Mazabrauds Syndrome
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Spine Health Support Group.
Connect
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.