Identity and verified background
The phrase "man who kept his arm up for 45 years" refers to Jan van der Kooij, a Dutch former bank employee who developed complex regional pain syndrome (CRPS) after a 1998 shoulder injury. In 1999, his arm became severely swollen and painful, leading doctors to recommend amputation. He refused and subsequently lived with his arm raised in a custom sling for approximately 45 years until his death in 2023. The case drew sustained medical and media attention because it illustrated long-term adaptation to a rare neurological condition and raised questions about care pathways, disability accommodations, and treatment alternatives.
Medical cause and CRPS explanation
Complex regional pain syndrome (CRPS), formerly called reflex sympathetic dystrophy, is a chronic pain condition most often triggered by surgery, fracture, or soft-tissue injury. In CRPS, the nervous system overreacts, causing prolonged pain, swelling, skin changes, temperature dysregulation, and motor dysfunction. Van der Kooij’s initial shoulder trauma led to progressive symptoms that rendered his arm essentially unusable and extremely painful. Standard treatments include physical therapy, nerve blocks, medications, and sympathetic nerve blocks; in severe, refractory cases, amputation has been considered when quality of life cannot be restored.
Why amputation was recommended
Specialists advised amputation because of irreversible tissue changes, unremitting pain, infection risk, and severely limited function. They argued that removing the limb could allow prosthetic fitting and rehabilitation, potentially improving mobility and reducing suffering. Van der Kooij’s choice to keep his arm reflected personal values, psychological adaptation, and attachment to his body image. His decision to avoid amputation aligned with patient autonomy, emphasizing that outcomes are individualized and depend on physical, emotional, and social factors.
Daily adaptation and 45-year sling use
Living with the arm raised for 45 years required practical adjustments in hygiene, dressing, transportation, and work. Van der Kooij used a custom sling and relied on others for certain tasks, while developing routines to maintain independence where possible. The long duration underscored the importance of durable support systems, including home modifications, occupational therapy, and consistent pain management. Despite the challenges, he remained engaged with family and community life, demonstrating how long-term disability can be navigated without resorting to extreme interventions.
Timeline and key milestones
| Date or Period | Event | Why it matters |
|---|---|---|
| 1998 | Shoulder injury | Initial trauma that preceded CRPS |
| 1999 | Arm swell and become unusable | Onset of severe CRPS symptoms |
| Late 1990s–early 2000s | Refusal of amputation and adoption of sling | Choice to preserve limb despite medical advice |
| 2000s–2020 | Continued sling use and adaptation | Demonstrates long-term management of refractory CRPS |
| 2023 | Death | End of the 45-year period; legacy informs patient-centered care discussions |
Comparisons and context
Van der Kooij’s experience is rare but instructive when compared with other long-term CRPS cases and stories of limb refusal. In many refractory cases, amputation can lead to improved function, but individual outcomes vary. His 45-year sling use contrasts with cases where targeted nerve blocks, spinal cord stimulation, or aggressive rehabilitation reduce pain and restore partial use. This comparison highlights the spectrum of CRPS management and the importance of personalized, multidisciplinary care.
- CRPS incidence: low, making long-term sling use exceptionally rare.
- Refractory cases may involve repeated interventions, psychological support, and palliative approaches.
- Outcomes depend on pain control, social support, and adaptability, not just medical decisions.
Relevance to disability, autonomy, and care
The story emphasizes patient autonomy, the limits of medical consensus, and the social dimensions of long-term disability. It raises questions about informed consent, alternative therapies, and the balance between quality-of-life preservation and risk mitigation. For clinicians, it reinforces the need to explore all reasonable accommodations, including assistive devices, home modifications, and mental health support, while respecting patients’ goals and values.
Tags: complex regional pain syndrome, disability adaptation, patient autonomy, refractory pain, medical decision-making