Xymena
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Unicorn Princess
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Xymena came to us at the age of 4 for evaluation of her complex congenital cervicothoracic scoliosis. Xymena has Goldenhar syndrome, also known as oculo-auriculo-vertebral syndrome, which affects 1 in ~5,000 live births. Goldenhar syndrome results in incomplete development of the ears, nose, soft palate, lip and mandible, as well as being prone to development of scoliosis. They had been to multiple other providers in different states who stated there were no treatment options for Xymena given the severity of scoliosis.
A challenging aspect of Xymena’s curve was her complex congenital anomalies. Her neck was fused in the front and lacked bone in the back. This made it difficult to perform more traditional spine surgery with screws and rods.
After much discussion we decided to proceed with halo gravity traction. You can learn more about this methods on our webpage. This allowed us to safely stretch her spine over several weeks. Our major goal of surgery….. get Xymena’s head in a better position and her left ear off her left shoulder!!!
After a successful course of halo gravity traction Xymena underwear surgery with a non-instrumented fusion and application of halo vest. She did great and her head position was much improved!!! She wore her halo vest for 3 months and then went back to her previous level of activities.
The plan was always to go back at a later date and perform a more traditional surgery with screws and rods. However, 3 years out from surgery Xymena is doing great, her head has maintained good alignment, and we continue to monitor her as she grows. We expect that Xymena will need a final spine surgery down the road, but for now she is living life to the fullest!!
“You don’t know how much I have to thank you for making this possible. She is able to do this because you took a chance and helped her. You are an amazing Dr and I can say we are very honored to have you treat Xymena. She is thriving because of and all your help”
Xymena’s Mom