That is super helpful! Right now we're being followed at Phoenix Children's Hospital because she is 12. We couldn't get into Ortho until Dec. I did do some reading on Bone Marrow Edema Syndrome and that seemed to be similar to her but it eventually resolved. She has complained of this pain for years. The first time she had an MRI was in 2019 and they noted the edema. The scan she had this month also noted edema. The focus at the moment is the mass on her thyroid but I'm concerned about the increase in pain she is having. The MRI technically only scanned her right leg from the knee down. I'm wondering if there could be a benign mass elsewhere on her bones causing all of this. With Pten (that is classified as a tumor suppressor disorder since her body can't stop the growth of masses) that she could possibly have some in her bones. They have only ever checked her kidney, thyroid, and dermatology check ups.
I'm trying to avoid just giving her pain meds. While I do give tylenol to help the symptoms I'm hoping for a resolution to the problem. It only seems to be getting worse.