Decision making process for amputation in case of therapy resistant complex regional pain syndrome type-I in a Dutch specialist centre

Schrier, Ernst; Dijkstra, Pieter U.; Zeebregts, Clark J.; Wolff, André; Geertzen, Joannes

doi:10.1016/j.mehy.2018.08.026

Cited by 12 publications

(15 citation statements)

References 35 publications

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“…Amputation has risks, including the new onset of PLP and RLP and recurrence of CRPS. Due to these risks, the importance of informed decision making has been emphasized in this patient population (Schrier, Dijkstra, Zeebregts, Wolff, & Geertzen, 2018). Ayyaswamy et al reported that studies which included a pre‐amputation discussion of expectations and multidisciplinary support had better QOL outcomes.…”

Section: Discussionmentioning

confidence: 99%

Targeted muscle reinnervation at the time of amputation in the management of complex regional pain syndrome of the lower extremity

et al. 2020

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Background Complex regional pain syndrome (CRPS) is a chronic, posttraumatic condition defined by severe pain and sensorimotor dysfunction. In cases of severe CRPS, patients request amputation, which may cause phantom limb pain (PLP) and residual limb pain (RLP). Targeted muscle reinnervation (TMR) reduces the risk of PLP and RLP. This report describes the use of TMR at the time of amputation in a series of patients with CRPS. Patients and methods Four patients (ages 38–71 years) underwent TMR at the time of amputation for CRPS between April 2018 and January 2019. Three patients had a history of trauma and surgery to the affected limb. All patients attempted pharmacologic and interventional treatments for 1–7 years before requesting amputation. Three patients underwent below‐knee amputations (BKA) and one had an above‐knee amputation (AKA). Target muscles included the soleus, gastrocnemius, and flexor hallucis longus (BKA), and semitendinosus, biceps femoris, and vastus medialis (AKA). Postoperative phantom and residual limb pain symptoms were collected via a telephone survey adapted from the Patient‐Reported Outcomes Measurement Information System (PROMIS). Results There were no complications related to the TMR procedure. Average follow‐up time was 12.75 months. Patients reported varied outcomes: two had RLP and PLP, one had RLP only, and one had PLP only. All patients reported successful prosthetic use. Conclusion TMR may be performed at the time of amputation for CRPS. Further study is necessary to determine the effect of TMR on pain, pain medication use, prosthesis use, and other domains of function.

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Section: Discussionmentioning

confidence: 99%

Targeted muscle reinnervation at the time of amputation in the management of complex regional pain syndrome of the lower extremity

et al. 2020

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“…Amputation as a treatment for longstanding therapy-resistant CRPS-1 has led to pain reduction and improvement in mobility of patients [2]. Additionally, patients with longstanding therapy-resistant CRPS-I who received an amputation had a better quality of life, had less pain and pain related disability, and were less depressed than patients with CRPS-I who had not been amputated [6,8].…”

Section: Discussionmentioning

confidence: 99%

“…In her medical history rheumatoid arthritis and a knee arthroscopy stood out. In our hospital she was evaluated by a multidisciplinary group (physiotherapist, psychologist, anesthesiologist, vascular surgeon and rehabilitation physician) experienced in elective amputation for long standing therapy resistant CRPS-I [7,8].…”

Section: Case Reportmentioning

confidence: 99%

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Undetected Myxofibrosarcoma in a Patient Diagnosed with Long Standing Complex Regional Pain Syndrome; A Case Report

Roldan¹,

Geertzen²,

Dijkstra³

2019

SCR

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Case presentation: A 61-year-old woman diagnosed with long standing, therapy resistant CRPS-1 fourteen years prior was referred to our center for assessment on her wish to have her limb amputated, due to recent worsening of the symptoms. A soft tissue lesion was detected on the affected limb and she was sent back to her primary hospital for further study of this lesion and exclusion of an alternative diagnosis. The biopsies were inconclusive, and no underlying causes were determined for her symptoms in her primary hospital. Thus, back at our center, elective amputation of the affected limb was carried out. Results: Post-operative histology of the amputated limb revealed a myxofibrosarcoma, a rare malignant tumor. Corresponding dissemination study, follow-up and treatment was conducted. The patient died from metastatic complications 17 months post-amputation. Conclusion: This case exemplifies how various confusing factors can lead to misdiagnosis of a malignant tumor. Low incidence of sarcomas, a previous CRPS-1 diagnosis of 14 years and inconclusive biopsies conducted in a primary hospital led to this misdiagnosis. Primary amputation was appropriate due to a dysfunctional limb, and size and local invasion degree of the tumor. The most important take away lessons in this case report are the importance of never discarding a neoplasm in presence of a growing mass even in the case of other possible causes and the fact that it merits a thorough diagnostic procedure, as well as the recommendation to conduct diagnostic tests in reference hospitals specialized in the relevant techniques.

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“…15 There are extensive guidelines on when to undertake revascularisation, and by which techniques, based on large, well-conducted randomised controlled trials. 16 In contrast, guidance and research regarding amputation decision-making is almost non-existent, 5 leading to variations in clinical decision-making. 17 Key to addressing this research priority is, therefore, to explore amputation decision-making and risk perception in detail.…”

Section: Introductionmentioning

confidence: 99%

PrEdiction of Risk and Communication of outcomE followIng major lower limb amputation: a collaboratiVE study (PERCEIVE)—protocol for the PERCEIVE qualitative study

et al. 2022

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IntroductionDeciding whether to proceed with a major lower limb amputation is life-changing and complex, and it is crucial that the right decision is made at the right time. However, medical specialists are known to poorly predict risk when assessing patients for major surgery, and there is little guidance and research regarding decisions about amputation. The process of shared decision-making between doctors and patients during surgical consultations is also little understood. Therefore, the aim of this study is to analyse in depth the communication, consent, risk prediction and decision-making process in relation to major lower limb amputation.Methods and analysisConsultations between patients and surgeons at which major lower limb amputation is discussed will be audio-recorded for 10–15 patients. Semi-structured follow-up interviews with patients (and relatives/carers) will then be conducted at two time points: as soon as possible/appropriate after a decision has been reached regarding surgery, and approximately 6 months later. Semi-structured interviews will also be conducted with 10–15 healthcare professionals working in the UK National Health Service (NHS) involved in amputation decision-making. This will include surgeons, anaesthetists and specialist physiotherapists at 2–4 NHS Health Boards/Trusts in Wales and England. Discourse analysis will be used to analyse the recorded consultations; interviews will be analysed thematically. Finally, workshops will be held with patients and healthcare professionals to help synthesise and interpret findings.Ethics and disseminationThe study has been approved by Wales REC 7 (20/WA/0351). Study findings will be published in international peer-reviewed journal(s) and presented at national and international scientific meetings. Findings will also be disseminated to a wide NHS and lay audience via presentations at meetings and written summaries for key stakeholder groups.

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Decision making process for amputation in case of therapy resistant complex regional pain syndrome type-I in a Dutch specialist centre

Cited by 12 publications

References 35 publications

Targeted muscle reinnervation at the time of amputation in the management of complex regional pain syndrome of the lower extremity

Targeted muscle reinnervation at the time of amputation in the management of complex regional pain syndrome of the lower extremity

Undetected Myxofibrosarcoma in a Patient Diagnosed with Long Standing Complex Regional Pain Syndrome; A Case Report

PrEdiction of Risk and Communication of outcomE followIng major lower limb amputation: a collaboratiVE study (PERCEIVE)—protocol for the PERCEIVE qualitative study

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