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L4 vertebra - fibrous dysplasia - what to do?

New member here.  50 yr old male.  I've had low back, R hip and abdominal pain/weakness for approx 8 years.  Have had 4 courses of PT that did not help much.  Recently had an X-ray of my low back and it showed a problem at L4.  Then went for an MRI and it confirmed a "lesion" at L4 and the diagnosis was "pathologic compression fracture."  Was referred to a spine surgeon who sent me for a CT guided vertebral biopsy.  The good news is it is a benign condition called fibrous dysplasia (FD).  The bad news is that it is appears to be a very rare condition in the spine and most spine surgeons aren't familiar with it.  The spine surgeon I saw recommended an open posterior fusion/fixation without removing the L4 vertebra.  Said it was not a rush because I was not in chronic pain.  My discs are not great above and below L4 but they are not herniated and I do not have radicular/sciatic pain.  Also, I happen to have had a CT scan 7 years ago of the pelvic and ab region, and the radiologist interpreting my recent MRI looked at it and confirmed that the L4 lesion was there back then.  The FD has now extended into the pedicles.  From what I have read the FD has likely been there from birth.          

I have not been able to find much help online about people who have had this condition in the spine.  There are a few case studies where people have had the vertebra removed, grafted and fused but they seem to have been patients in real bad pain.  The surgeon I saw indicated that it will likely get worse as I age and that it could lead to further compression of the vertebra and other related problems.    

Just not sure what to do at this point.  Don't want surgery but not sure PT and strengthening around it will help.  We didn't know what the condition was when I went to PT in the past, but now sure it would have made a difference.  Hard to even find a specialist to talk to that is familiar with spinal FD and what my options are.  

Any advice or suggestions would be much appreciated.




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