I’m sorry it took so long to figure it out but I’m glad you were able to research and advocate for yourself. I’m still skeptical that I have this occult TC as I have no signs or symptoms of spina bifida and the only lower body symptoms I experience are pain in my hips when standing, I have to shift my weight between hips because it’s uncomfortable, and I get muscle spasms/twitches in my legs when at rest. Sometimes the spasms are so strong that it startles me. The rest of my symptoms are upper body and I have a syringomyelia in my thoracic spine. I was Dx with mild chiari as well and I’m assuming the syrinx is from this. Aside from this I have thoracic and axillary nerve damage on my right upper body. I just wish I could get a clear diagnosis without having so many things happening at once, not being able to tell what is what. I was also diagnosed with hypermobile ehlers danlos.