My daughter first had LCH of the spine (T4 vertebrae) in 2006, with a recurrence in 2009 (T6 & L1).  Both times it was preceded with intense pain for several months that did not show up on any of the scans.   She is now again in an intense pain cycle without scans showing the cause.  how common is this in histio patients and could this pain now just be her "new normal"?

Summarized question: How common it is for histiocytosis patients to have spinal pain?