Research internet for drs that treat this and the ones you feel have great reviews you can email them and they maybe can help. I did that when I had a child diagnosed with syringomyelia and every dr reposted to me either by email, one even had their PA call me. I’ve so emailed pictures of cyst I had with a dermatologist and they helped me out. You can send them copies of your X-rays etc and they can steer you in the right dr Good luck