My 21 year old son, E has NDPH. When he was 18 years old, E developed Thoracic Outlet Syndrome; not a candidate for surgery; in March 2014, we finally found the right TOS doctor and E was able to correct a great deal of his problems with an orthopedic vest. Last July, just at the tail end of his initial recovery, E developed a headache. It has never left. The headache has migraine features and a postural component. It increases in intensity when E is up and about. When he lays down it decreases and he sleeps well. He does not have a spinal leak. Migraine can also cause pain in other parts of my son’s body (knees, shoulder, hands). E is under the care of the pediatric headache clinic at University of California San Francisco. He has run the gamut of protocols, including DHA and Thorazine in patient stays. Next up is a lidocaine inpatient. My questions for the forum: Anybody out there have a similar profile to my son? E had quite a bit of neck involvement with TOS; has anybody heard of or consulted with Dr. T. Rozen re NPDH and neck issues; Have nerve blockers worked for anybody with NPDH; Botox?
Need to get my little guy better; he has had to drop out of college and is really missing his old life.