Long-standing Complex Regional Pain Syndrome-type I: Perspectives of Patients Not Amputated

Abstract

Objective: Complex Regional Pain Syndrome type I (CRPS-I) is an often intractable regional pain syndrome, usually affecting limbs in which amputation may be a final resort. Not all patients are suited for amputation. This retrospective case series with explorative interviews aims to gain insight in the quality of life in those who have been denied an amputation and their functioning with CRPS-I.Patients and methods: Between 2011 and 2017, 37 patients were denied an amputation. Participants were interviewed regarding quality of life, treatments received since their outpatient clinic visit and their experiences at our outpatient clinic. Results: A total of 13 patients participated. Most patients reported improvements in pain, mobility and overall situation. All patients received treatments after being denied an amputation, with some reporting good results. Many felt they had no part in decision making. Of the 13 participants 9 still had an amputation wish. Our participants scored worse in numerous aspects of their lives compared with patients with an amputation from a previous CRPS-I study of us.Conclusion: This study shows that amputation should only be considered after all treatments have been tried and failed, since most participants reported improvements in aspects of their functioning over time. LAY ABSTRACTPeople with complex regional pain syndrome suffer from severe pains, usually in a limb, which can lead to serious and longstanding disability. Sometimes when all other treatments have been tried, amputation is the only option left. Not all patients are suitable for amputation. This study tries to gain insight into those patients who have been denied an amputation. Our findings show that over time most patients reported improvements in pain, mobility and overall situation. All patients received further treatments after being denied amputation. Our study showed that amputation should only be considered after all other treatments have been tried and have failed, since over time, most of our participants still reported improvements in various aspects of their functioning.