Fibrous bone dysplasia

Posted by lottie785 @lottie785, Apr 9, 2017

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

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dar1982 | @dar1982 | Apr 9, 2017

I have fibrous dysplasia.,

lottie785 | @lottie785 | Apr 9, 2017

Do you have a rod in your femur?

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Apr 9, 2017

Hello @lottie785 and @dar1982,

Welcome to Connect. I found two discussions on fibrous dysplasia which you may wish to view:
Fibrous Dysplasia involving skull bones: http://mayocl.in/2nufhOd
Fibrous Dysplasia in Humerus. My 12 Years son has diagnosed with Fibrous [...]: http://mayocl.in/2phnRwd
In the meantime, I'd like to tag @jsandhu76 @concernedmother17 and @tonny239, in the hope that they return with more insight for you.

@lottie785 @dar1982, could you tell us a little more about yourselves? How was the fibrous dysplasia diagnosed? What symptoms do you have?

lottie785 | @lottie785 | Apr 9, 2017

In reply to @kanaazpereira "Hello @lottie785 and @dar1982, Welcome to Connect. I found two discussions on fibrous dysplasia which you..." + (show)

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.

dar1982 | @dar1982 | Apr 9, 2017

In reply to @lottie785 "Do you have a rod in your femur?" + (show)

No. I have it in my temporal bone

lottie785 | @lottie785 | Apr 9, 2017

In reply to @lottie785 "Do you have a rod in your femur?" + (show)

Does it give you chronic pain?

dar1982 | @dar1982 | Apr 9, 2017

In reply to @kanaazpereira "Hello @lottie785 and @dar1982, Welcome to Connect. I found two discussions on fibrous dysplasia which you..." + (show)

Thank you . I have had headaches and pain through out my life. I wasnt diagnosed until i was 50. I had very bad vertigo and pain. I had to go to the mayo to get officially diagnosed. Dr Tieggs was my savior. I have chronic pain, fatigue. I get bouts od dizziness, partial hearing loss.