If you go to asap.org there is a list of dr’s on medical board that specialize they are mostly pediatric neurosurgeons who also care for adults as well. In our case we were told our child’s syrinx ,it couldn’t be drained as they said it would come back again and that where it is located in our child there was no room for a pain stimulator so his pain is managed with medication, and meditation to a degree. Went to neuro pt which has helped too and learned meditation. You can find people to talk with there as well that have same condition