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After the huge support of the summer 2016 Paralympics in Japan, the popularity and the sight of amputee athletes using prosthetics often seems to give a degree of hope to sufferers of Complex Regional Pain Syndrome (CRPS) that once lived an active life, now disabled due to the debilitating pain.
As a CRPS charity we have been asked the question “Is Amputation A Cure For CRPS?” hence the need for this CRPS amputation blog. However, what needs to be considered is the potential reoccurrence of CRPS and/or phantom limb pain after the amputation for CRPS can make a prosthesis impossible to use, as they cannot even tolerate putting it on.
CRPS amputations still remains highly controversial even if the amputation is for the treatment of long-standing, therapy resistant CRPS (Bodde, M.I. et al. 2011).
There have been a number of fairly high profile cases of CRPS amputations in over the last few years in the media, and this has led to other CRPS sufferers also wanting an amputation of their CRPS affected limb.
But is amputation really a cure for CRPS? Will it actually stop the continuous debilitating pain from the Complex Regional Pain Syndrome? Does amputation help CRPS? In this amputation for CRPS blog we are going to look further into the research and specialists opinions on CRPS amputation in patients.
Chronic CRPS can be a very debilitating condition and resistant to the range of CRPS treatments that are available. Amputation is always considered as a very last resort for CRPS, if at all (Hohendorff, B. et al 2011). However doctors and specialists don’t like to consider amputation as a form of CRPS treatment, even in the most severe cases. This is usually because there is very little evidence available to support amputation for CRPS.
All options should be explored for pain control and dysfunctional limb treatment before amputation of the CRPS affected limb or extremity is considered.
However, if a patient has long-standing and therapy-resistant CRPS Type 1, then amputation can be justified (Kashy, B.K. et al 2015). In a case report by Finlayson, H & Travlos, A. (2003) they stated that consideration may be given to amputation in patients with CRPS I, if the disease has plateaued and there is a clear indication for improvement of residual function rather than pain relief.
The main aim of amputation is usually to increase quality of life and mobility but also to decrease pain intensity (Bodde, M.I. et al 2014).
In the small 2019 study Ayyaswamy, B et al. they concluded that 66% of those people they studied had an improvement to their quality of life after they had the amputation.
The decision making process for amputation due to CRPS is very different from that for amputation due to cancer or vascular disease. In the latter cases it may be a life-saving option and the only obvious choice, whereas surgeons may have difficulty in deciding to remove a viable limb with CRPS.
Remember though that life with excruciating pain and a dysfunctional limb may be even more disabling. You may feel frustrated after trying numerous treatments that have failed and you may believe that amputation is your only option available to you and that it may offer you a better chance. However you must remember amputation only gives rise to the risks of new problems.
Due to the contradictions, guidelines advise against performing amputations for CRPS. Informed decision making regarding amputation for CRPS is a team process involving health care professionals as well as you, the patient. However the newly updated RCP CRPS guidelines have now included amputation for CRPS.
Pre-amputation counselling is sometimes provided for patients undergoing amputation and psychological assessment is sometimes requested by the multi-disciplinary team involved.
Due to all the media attention on various CRPS patients who have either performed an amputation on themselves or have gone on to have an amputation for CRPS, the Royal College of Physicians included amputation for CRPS into their complex regional pain syndrome guidelines updated in July 2018. They stated that a multi-disciplinary team (MDT) must be involved before a referral for a CRPS amputation is made. That MDT must as a minimum include the following professionals:
(RCP CRPS Guidelines 2018)
Amputation as a possible treatment option for long standing therapy resistant CRPS may be considered after other evidence based options have failed (Bodde, M.I. et al 2014).
If amputation is considered at some stage by your medical team, you may feel understood or feel that your problems are being taken seriously, which may make some positive difference to post amputation problems (Bodde, M.I. et al 2014)
It is very normal for a CRPS patient to want to have their affected limb amputated and this is believed to be caused by body perception disturbance (BPD).
BPD is when a patient’s visualisation of the affected limb is distorted; we may envisage our limb as bigger, longer or in a different position to what it really is. Also, our thoughts and feelings about the affected limb are altered because of the levels of pain we feel. BPD is very common in CRPS patients and is becoming more recognised as a symptom of CRPS.
Lewis, J.S, McCabe, C et al. explains this further:
‘Patients with CRPS commonly report that the affected limb is psychologically ‘detached’ from the remainder of their unaffected body (a sense of disowning) such that it feels alien and outside of their control. An extreme form of detachment is expressed by some as a desperate desire to amputate their limb. Despite under- standing clinical opinion, advising against amputation, some patients continue to express this intense urge to amputate the limb and can commonly describe, in some detail, how they plan to get rid of it.’ (Lewis JS, Kersten P, McCabe CS, McPherson KM, and Blake Dr, 2007)
One piece of research in 1995 studied limb amputation of patients with CRPS and concluded that for the majority they were still enduring significant pain and were unable to wear a prosthesis.
‘Limb amputation was studied in 28 CRPS patients after 34 amputations of 32 limbs. This had been performed for untenable pain, recurrent infection, or to improve residual function. Only two patients were relieved of pain by amputation… in 28 amputations, CRPS recurred in the limb stump. Only two patients could wear a prosthesis.’ (Dielissen, 1995)
In the Dielissen et al 1995 study, the authors determined overall that pain relief was rare and recurrence of CRPS was frequent within the stump that prevented the use of prosthetics. Furthermore, amputation to increase residual function or for severe incurable infection was not universally successful (Pagoti, R. et al 2007).
From the Dielissen et al 1995 study it was concluded that amputation in CRPS Type I patients should only be performed to increase residual function or to relieve severe incurable infections.
There is no guarantee that after amputation CRPS will no longer be present or even spread to another part of the body.
Following amputation, 3 main types of pain have been reported; recurrent CRPS with pain in the stump, pain in the stump without CRPS and phantom limb pain. The risk of phantom limb pain is very high, but there is no certainty that the amputation has been carried out above the level of the CRPS.
Many pain consultants seem to believe that in the case of severe CRPS, the risk of recurrence of the CRPS in the amputation stump is high; possibly as much as 50%.
Midbari, M. et al (2016) concluded that none of the 19 amputees were totally pain free, the most prevalent pain was phantom limb pain in 89%, followed by 42% who had pain in the stump and 32% of the group had recurrent CRPS in the amputated limb. However most patients had more than 1 type of pain and just 10% resumed employment.
In another study by Bodde, M.I. et al 2014 72% of the group of CRPS amputees experienced phantom limb pain within the first 3 months. After 1 year they found 86% experienced phantom limb sensations, 71% experienced residual limb pain with a wide range of frequency and disability and 27% had CRPS reoccur after 1 year post amputation.
However, although research has shown that many CRPS patients do badly in terms of the recurrence of pain, they were often relieved that the affected limb was gone and was not part of them anymore. People considering amputation often say that they no longer consider the affected limb to be a part of them as we mentioned earlier.
‘To amputate or not’ (Bodde, M.I. et al 2011) explains how amputation may be seen as a chance to get rid of their limb which they see as useless. Instead, this can make the pain worse than was prior to amputation. Alternative treatment methods should be favoured over amputation due to the high risks attached.
Guidelines support amputation as a treatment only in the presence of therapy-resistant infection that cannot be cured by antibiotics. In general, guidelines warn against amputation because of the high occurrence of CRPS and poor use of prosthesis (Bodde, M.I. et al 2014).
There is not only pain, phantom limb pain or sensation and CRPS to consider when thinking about amputation, Szeinberg-Arazi et al (1993) reported that patients with a post-CRPS amputation also require psychological support.
‘Patients with intractable pain in a limb due to CRPS type I may enquire about amputation as a means of ridding themselves of the severe pain and useless limb. Although this may successfully relieve the pain, there is a substantial risk that amputation of a painful limb will lead to the development of stump and phantom limb pain of CRPS, or even worse. Attempts at pain relief and restoration of function are preferable to amputation.’ (Krans-Schreuder, Bodde, Schrier, et al. 2012)
According to Rowbotham, M.C. 1998:
‘amputation is not to be recommend as pain therapy. All 11 patients in our series of 824 CRPS patients who underwent amputation showed marked deterioration post-op. The surgical stump was the source of multiple neuromas with sever CRPS II type of intractable pain. Amputation should be avoided by all means due to its side effects of aggravation of pain and tendency for spread of CRPS.’
The risks are very high and only a small minority are free of CRPS, you could be left with even more pain than with the limb. You may not be able to use a prosthesis meaning mobility could decrease even further.
The majority of research carried out into amputation of a CRPS limb has poor outcomes for the patients and clearly shows the level of risk amputation carries.
Furthermore, due to these research outcomes and specialist opinions many physicians are unlikely to agree to amputation unless there are extreme circumstances.
‘At this time, there is no research to support amputation as a cure for CRPS, and with the unknown true pathology of CRPS, the extent of peripheral versus central neuropathic pain, amputation may be of no benefit and may lead to more pain and decreased functions outcomes.’ (Cristian, A. 2014)
Unfortunately it would appear that pain specialists are sometimes reluctant to even discuss amputation for CRPS (Midbari, A. & Eisenberg, E. 2017) even when there are still some patients living with CRPS intractable to all known pain and rehabilitation therapies.
As Midbari, A. & Eisenberg, E. 2017 say:
“Thus, at least some patients with “end-stage” CRPS remain hopeless, helpless, and cureless with regards to pain and function.”
Why should CRPS patients have to remain in a hopeless and cure-less situation with a very debilitating condition? We are certainly not saying that amputation is the only way forward because it isn’t.
It is obvious from the research into the area of amputation for CRPS that amputation is certainly not a cure, but maybe amputation should be considered at some point when all of the treatments have been explored and exhausted? What do you think?
What is most certainly obvious is that more research is needed in the area of CRPS and amputation, to help determine which patients may benefit from amputation, level of amputation, recurrence of CRPS-1, patient satisfaction, and level of functional gains post amputation (Kashy, B.K. et al 2015).
To conclude, as we said at the beginning, amputation for CRPS is highly controversial due in part to the potential for worsening or recurrence of CRPS symptoms and phantom limb pain. Therefore it could be said that amputation is not considered a cure for Complex Regional Pain Syndrome (CRPS).
However amputation may be contemplated as a last resort if there are recurring infections, the CRPS is long-standing, retractable and therapy resistant (Kashy, B.K. et al 2015; Midbari, A. et al 2016; Krans-Schreuder H.K. et al 2012). But there is insufficient evidence that amputation positively contributes to the treatment of CRPS (Dielissen et al.1995, Stam et al. 1994).
It was concluded in the case study by Goebel, A. et al (2018) that the current evidence doesn’t support the use of amputation for CRPS to improve either pain or function.
As in this case study and in the RCP CRPS Guidelines (2018) before a decision is made, in exceptional cases, about referral for amputation, dorsal root ganglion stimulation should be considered as a potentially effective treatment. It is crucial that all treatments should be tried including neuromodulation like the Dorsal Root Ganglion (DRG) stimulation.
As you can see from our ‘Is amputation a cure for CRPS?’ blog above, amputation for CRPS is extremely controversial and as research has shown many doctors won’t amputate unless the limb isn’t viable and/or there are non-treatable, recurring infections.
As amputation for CRPS is now listed in the RCP CRPS Guidelines (2018), we now hear of more cases of CRPS patients asking for amputation. The risks are still the same whether you have ulceration or not. But being prepared and knowing all of the risks that could occur is crucial.
However there are still many occasions where doctors are faced with CRPS sufferers who have recurring infections and they won’t amputate. So even though the research is lacking in this area of CRPS amputations there is no hard and fast rule of when a doctor will start talking to you about the possibility of amputation for CRPS.
This CRPS amputation blog has been written by both Lisa, 1 of Burning Nights CRPS Support’s trustees who is an above knee amputee and also by the charity’s Founder Victoria Abbott-Fleming who is a bilateral (double) above knee amputee due to the aggressive symptoms of CRPS.
If you would like to talk to our founder, Victoria about amputation please either ring our helpline on 01663 795055 or email Victoria direct.
Final thoughts – What do you think about amputation for CRPS? Do you think CRPS amputation is right or not? Is there ever a time when amputations for CRPS are right? Does amputation really help CRPS? Tell us your thoughts on amputation for CRPS in the comments below or share our CRPS amputation blog on social media.
Last Updated: 27/07/2020