Hopeful: Vertebra Plana and Bone Regrowth, Back Braces

People keep asking why Olivia has to wear a back brace. The short answer is to stabilize her spine. Here's the long answer:

As you can see, whichever form of histiocytosis she has, caused lesions in the vertebra, leading to vertebra plana, or the flattening of a vertebra. In her case, this caused excruciating back pain (in several areas) and the pain even traveled around her rib cage, above the area where her stomach would be. (So much for the mild milk allergy causing pain!) During her open biopsy, the nerve that was causing all the pain was snipped. Between that and the initial round of steroids that pain is gone.

Initially I was told about two options, one would be to put Livvy in a brace and allow the bone to regrow. The bone could either fuse to the next vertebra naturally or could regrow into its original shape and fill the space. The other option would be surgery with rods, but that's off the table right now. She's in the brace for 6 weeks and is set to start steroids this week.

I did some research on Vertebra plana in children and came across a study called "Vertebra plana. Long-term folow-up in five patients," published by "The Journal of Bone and Joint Surgery" out of Massachusetts. The study followed five patients treated at the Department of Orthopedic Surgery in Rome, Italy. All of the patients had Histiocytosis and were followed for between twelve and thirty years after the initial diagnosis. They were between the ages of 4 and 12 at the time of diagnosis. Years later, none of the patients had any symptoms related to the original disease which caused vertebra plana and the bones regrowth was between 48 and 95 percent of normal. This gives me great hope.

The image below was included in the study. The boys in the study were diagnosed at the ages of 4,5,7,10 and 12. Follow up ages were 19, 25, 19, 40 and 30 respectively. The boys wore plaster jackets, back braces and one had chemotherapy.

Vertebra plana case study over several years

The link to the study on Vertebra plana is here: Vertebra plana follow up study. (It opens as a PDF file).

Here are some pictures of Olivia's spine, taken during a CT scan at the Connecticut Children's Hospital in July 2010.