Complex Regional Pain Syndrome (CRPS) – To amputate, or not to amputate, that is the question
There has been a recent flurry of news articles and a number of high profile cases of Complex Regional Pain Syndrome (CRPS) amputations with some sufferers even turning to crowd funding sites to help pay for the procedure on a private basis. see here and here.
At Cromptons Solicitors we specialise in CPRS cases and as a result of recent press interest we have been inundated with questions from Complex Regional Pain Syndrome sufferers considering an amputation of their Complex Regional Pain Syndrome affected limb.
Complex Regional Pain Syndrome typically, but not always, develops after an injury or trauma. The National Institute of Neurological Disorders and Strokes states that in 90% of cases Complex Regional Pain Syndrome is usually triggered by a clear history of trauma or injury. This can involve fractures, strains or sprains, cuts, burns, limb immobilisation and following surgical/medical procedures.
Amputation is a controversial topic when it comes to Complex Regional Pain Syndrome (CRPS) and to be perfectly frank whilst we can point you in the right direction it’s not something we can advise on as its more a question for the medical experts. Those looking to make such a decision should speak with the medical professionals in charge of their care. What we can say is that individuals need to weigh up the Pros and Cons for what is essentially going to be a life changing decision. Whilst Complex Regional Pain Syndrome can be, and often is, a very debilitating condition there are medicinal and other alternatives to help ease pain.
We appreciate that it is generally individuals whose pain proves wholly resistant to treatment that go on to consider amputation but even then, it’s not a straightforward process. Individuals must remember that the health professionals, even where supportive of amputation, will want to be satisfied that the person is mentally prepared for the procedure. There will normally be some input from counsellors, psychologists and other professionals. If the procedure is to take place privately rather than on the NHS, the costs involved which will often be in the tens of thousands of pounds. So, even where amputation is an option it could be a long drawn out expensive affair and there is no guarantee of a cure.
In a study carried out in 1995, limb recovery was studied in 28 Complex Regional Pain Syndrome (CRPS) patients who had undergone amputation for untenable pain, recurrent infection, or to improve residual function. Only two patients of this cohort were relieved of pain by amputation. For the majority of patients, Complex Regional Pain Syndrome recurred in the limb stump.
The question of amputation in Complex Regional Pain Syndrome is further complicated as there remains the uncertainty of whether the amputation has been carried out above the level of the CRPS. Anecdotally, many pain consultants are of the view that the risk of recurrence of Complex Regional Pain Syndrome in the amputation stump is high; possibly as much as 50%. In a study carried out in 2016 involving 19 participants, not one of the participants who had undergone amputation were found to be totally pain free with the majority of the participants now also having phantom limb pain.
If amputation is a viable option and a medical professional has agreed to carry out the procedure the individual will need to consider whether prosthesis is likely to be of assistance. The results of the 1995 study showed that overall pain relief was rare and recurrence of Complex Regional Pain Syndrome was frequent within the stump which then prevented the use of prosthetics. In the above study, only two patients could wear a prosthesis, with the majority unable to weight bear due to the continuing hypersensitivity and pain caused by CRPS.
With the popularity of the Paralympic games and the Invictus games the sight of amputee athletes participating in events with prosthesis blades can give hope to formerly fit and active people whose lives have been marred with this disabling and painful condition. Whilst an expensive procedure, we are also getting some very good feedback from people suffering from Complex Regional Pain Syndrome (CRPS) who have undergone Osseointegration.
We know from experience that doctors and other medical specialists don’t like to consider amputation as a form of Complex Regional Pain Syndrome treatment, even in the most severe of cases, simply due to the fact that there is actually very little evidence to support that amputation is a cure for CRPS. As it currently stands medical guidelines support amputation as a treatment only in the presence of therapy-resistant infection. It is our view that amputation should always be considered as a very last resort for Complex Regional Pain Syndrome and only where the condition is resistant to treatment and there are other issues such as ulceration, skin breakdown or dystonia etc. The main aim of amputation usually being to increase quality of life and mobility.
It’s not all doom and gloom though as there are individuals for whom amputation has improved their quality of life. Its not an easy decision to make and therefore we certainly don’t believe individuals can be criticised should they decide to take a gamble with amputation. If anything, the decision should be respected and the individual supported wherever possible.