Barw Barw Medical Journal 2960-1959 2025 11 20 Suffering of Patients with Neurogenic Thoracic Outlet Syndrome (TOS); The First Qualitative study in TOS 21 26 10.58742/bmj.v4i1.214 eng Fahmi H. Kakamad College of Medicine, Department of Clinical Sciences, University of Sulaimani, Madam Mitterrand Street, Sulaymaniyah, Iraq. fahmi.hussein@univsul.edu.iq Shvan H. Mohammed Kscien Organization for Scientific Research (Middle East Office), Hamdi Street, Sulaymaniyah, Iraq. shvanh80@gmail.com Berun A. Abdalla Department of Scientific Affairs, Smart Health Tower, Madam Mitterrand Street, Sulaymaniyah, Iraq. berun.anwer95@gmail.com Saywan K. Asaad Department of Orthopedic, Smart Health Tower, Madam Mitterrand Street, Sulaymaniyah, Iraq. saywan.asaad@gmail.com Abdullah K. Ghafour Department of Orthopedic, Smart Health Tower, Madam Mitterrand Street, Sulaymaniyah, Iraq. abdullah.ghafour@gmail.com Nsren S. Sabr Department of Obstetrics and Gynecology Radiology, Smart Health Tower, Madam Mitterrand Street, Sulaymaniyah, Iraq. nsren.sabr@gmail.com Yadgar N. Abbas Department of Psychiatry, Shahid Doctor Hemn Psychiatric Hospital, Qanat Street, Sulaymaniyah, Iraq. yadgar.abbas@gmail.com Lawen J. Mustafa Department of Rheumatology, Ministry of Health, Shorsh Street, Sulaymaniyah, Iraq. lawen.mustafa@gmail.com Azad Star Hattam Department of Neurosurgery, Smart Health Tower, Madam Mitterrand Street, Sulaymaniyah, Iraq. azad.hattam@gmial.com Choman S. Omer Department of Radiology, Smart Health Tower, Madam Mitterrand Street, Sulaymaniyah, Iraq. choman.omer@gmail.com Ahmed H. Ahmed Department of Radiology, Smart Health Tower, Madam Mitterrand Street, Sulaymaniyah, Iraq. ahmed.ahmed@gmail.com Omed Mohammed Hussein Department of Rheumatology, Smart Health Tower, Madam Mitterrand Street, Sulaymaniyah, Iraq. omed.hussein@gmail.com Lawand Ahmed Sharif Department of Orthopaedics and Traumatology, Shorsh General Hospital, Sulaymaniyah, Iraq. lawand.sharif@gmail.com Ayoob A. Mohammed College of Medicine, Department of Clinical Sciences, University of Sulaimani, Madam Mitterrand Street, Sulaymaniyah, Iraq. ayoob.mohammed@gmail.com Ali H. Hasan Department of Radiology, Sulaimani Directorate of Health, Sulaymaniyah, Iraq. ali.hasan@gmail.com 2025 09 10 Background Diagnosis of neurogenic thoracic outlet syndrome (nTOS) is hindered by symptom overlap with cervical radiculopathy, carpal tunnel syndrome, or psychosomatic disorders. This challenge is further compounded by often normal imaging and electrodiagnostic findings, resulting in prolonged diagnostic suffering encompassing emotional, financial, and social burdens. Objectives This first qualitative study explores narratives from 25 diagnosed women initially prescribed physiotherapy: (1) identify key themes related to diagnostic challenges; (2) examine the psychological and emotional impact of diagnostic delay; and (3) propose a patient-centered diagnostic framework. Methods Qualitative descriptive design using semi-structured interviews (20-30 minutes) with purposive sampling from a TOS clinic (inclusion: confirmed nTOS, >1-year symptoms, no prior surgery; Data saturation was achieved after 22 interviews). Braun and Clarke’s reflexive thematic analysis generated 1,247 inductive codes, which were organized into four themes and twelve subthemes. NVivo software was used for data management. Member checking was conducted, and reporting followed COREQ guidelines. Ethical approval was obtained, and participant anonymity was preserved through pseudonyms. Results Four overarching themes emerged: (1) Fragmented Diagnostic Odyssey, characterized by multiple referrals (mean six clinicians per patient) and substantial out-of-pocket costs (USD 1,000–1,500); (2) Cascade of Misdiagnoses, including somatic mimics, invasive investigations, and prolonged incorrect treatment; (3) Social and Familial Invalidation, involving medical dismissal and pressure toward psychiatric explanations; and (4) Profound Emotional Suffering, with isolation and hopelessness identified in 84% of transcripts. A conceptual model was developed to illustrate the cumulative diagnostic journey. Conclusion Neurogenic thoracic outlet syndrome is associated with multilayered diagnostic and social invalidation consistent with the stigma of invisible illness. Improving outcomes requires enhanced clinician awareness of nTOS-specific red flags, validation of patient narratives, and multidisciplinary diagnostic pathways to reduce delays, prevent iatrogenic harm, and alleviate psychological distress.