Diagnosing and Treating Venous Thoracic Outlet Syndrome: A Teenager's Experience and Perspective

I am a 17-year-old girl and was diagnosed with venous thoracic outlet syndrome (vTOS) last year. It took 7 months and numerous visits with different doctors to receive the accurate diagnosis of vTOS, and I ultimately had a first rib resection and venogram. Reasons for the delay in my diagnosis are (1) vTOS is hard to diagnose, especially in adolescents, (2) the relation between a fever and swelling, which was later attributed to a blood clot, was overlooked, and (3) initial scans and tests were not in the right areas or were reviewed by people unfamiliar with vTOS. Raising awareness of vTOS can help pediatricians, orthopedists, and vascular surgeons diagnose and treat vTOS in earlier stages, which will help patients be treated sooner and lower the chances of permanent blockage of their vein, while also lessening the stress, fear, and frustration of a long period without a diagnosis and action plan.