Amputation is a controversial topic for people with complex regional pain syndrome. I don’t think a CRPS sufferer exists who hasn’t thought about it. I’ve spent many a night lying awake wishing that I could just chop off the leg that’s causing me such pain. Every time I watch Paralympic sport on the TV it makes the urge stronger; I see incredible people with amazing prostheses and wish with all my heart that I could be like them.
CRPS can disconnect you from affected parts of the body; a lot of the time, I feel like my CRPS leg just isn’t part of me. It’s never the same temperature as the rest of me, forever fluctuating between icy cold and scalding hot. It doesn’t look the same either as daily it oscillates from blue to scarlet and back again. At times it is such a deep red that my husband looks at me with horror because he’s never seen a human being that colour. The toenails on my left foot have become ridged and ugly. They don’t grow at the same rate as the nails on other foot either. Neither does the hair on my leg, leading to weird scenarios where I have to cut my nails and shave my legs individually on an entirely separate schedule!
I also have a lot of negative thoughts towards my affected leg. It’s not an overstatement to say I generally hate it. I try not to, as hate never made anything any better, but I deeply resent the pain it causes me and daily I wish it were gone. And it’s not just the pain it causes, it’s the knock-on impact of that pain; that I can’t go out for dinner with my husband like normal couples do, that I can’t take my daughter to play in the park like normal mums do, that I can’t pop out to walk my dog like normal pet owners do. It’s not fair and it never will be. This one limb is the root of all my problems, all my pain, all my sadness: why would I not want to be rid of it?
Unfortunately the reality is that doctors don’t believe amputation will help me; they actually think it would make my situation worse. There is a significant chance that the CRPS would simply go to wherever the nerves end, so the pain I now have in my foot would just transfer to my stump. That would make wearing a prosthesis difficult if not impossible; I struggle to wear socks on my bad foot so strapping a prosthesis onto a similarly affected area would be out of the question. It’s also possible that amputation could be the trigger for CRPS to spread to other areas of the body. I am incredibly lucky (for now) that my CRPS, unlike that of several of my friends, has not yet spread and I’m thankful every day that this remains the case. The fear of having to cope with this crippling pain in more than one part of my body genuinely keeps me awake at night.
Even if the CRPS disappears with amputation, there is a strong possibility of developing phantom pain, whereby pain and other uncomfortable sensations are felt in the amputated area. On top of pain, symptoms can include tingling, cramping, heat and cold. Phantom pain is very difficult to treat and again, can make wearing a prosthesis impossible.
So is amputation categorically the wrong course of action then? Well no, actually. A couple of very brave young women have recently been in the news regarding their limb amputations for CRPS.
Hannah [WARNING – some graphic imagery here.]
Both Hope and Hannah were refused amputations by the NHS and so fundraised themselves to pay for the operations privately. In Hannah’s case, her desire for amputation was exacerbated by a side effect of the CRPS; she’d begun to experience terrible breakdown of the skin on her affected foot, leading to horrible infected ulcers that crippled her. Given that I can’t even bear the brush of fabric on my affected leg, I cannot imagine what it was like to have such terrible wounds. Hannah’s pain was so great that the bandages on her leg could only be changed under general anaesthetic; she had 53 operations in 68 weeks. That’s no life for anyone, let alone a young woman with her entire future in front of her.
I’m overjoyed to say that both girls are doing very well after their surgery and each describes the decision to operate as one of the best choices they’ve ever made. They’re getting back to the lives they want, going to university and pursuing sport again; they were both fantastic athletes prior to the onset of CRPS. Both are planning to compete in upcoming Paralympic competitions which would be an incredible achievement.
So is amputation the right course of action after all, then? The NHS would say no. There are significant chances that amputation will cause other problems that can be as great (or even greater) than those caused by the CRPS. And the biggest issue is that there’s no way of knowing until you’ve done it and then no going back; it’s not possible to trial amputation in the way you do with a spinal cord stimulator. Amputation is a massive intervention, both physically and psychologically, and I can understand why doctors do not want to do something so drastic without a strong chance that it will benefit the patient.
Personally, I would not currently consider amputation for my CRPS, but I respect those who do so. I certainly believe that if you are experiencing terrible skin ulceration that isn’t improving then it’s entirely understandable to explore this avenue. And it’s worth noting that there seems to be some medical evidence coming through that it might actually improve the lives of those suffering with CRPS. A study released in 2012 looked at 22 Dutch patients with longterm, treatment-resistant CRPS who had undergone amputation of an affected limb. Of these, 95% reported an improvement in their lives. 90% had a reduction in pain, 81% had improved mobility and 67% felt their sleep had improved. Eighteen of 21 patients would make the same decision again.*
I think the overall message is to watch this space. I think it’s very likely that we’ll see more patients like Hope and Hannah who obtain an amputation privately when the NHS will not act. Certainly, not all doctors think it is the wrong thing to do: private and NHS doctors are held to exactly the same standards, so the private surgeons who operated on Hope and Hannah definitely believed the benefits to them would outweigh the risks. I hope we’ll see more research like the 2012 Dutch study that looks at amputation not just in the context of how the limb is afterwards, but in a much more holistic way, looking at the potential benefits to the patient’s whole life. That might shed new light on this controversial treatment. As I’ve said, it’s not a choice I would consider right now, as through medication and my spinal cord stimulator, my CRPS is at a level where I can live with it. However, I do very much understand and respect those who feel they have no choice but to pursue this option. I hope that it provides those sufferers with the relief they desperately crave.
You may also be interested in the following articles:
Krans-Schreuder HK, Bodde MI, Schrier E, Dijkstra PU, van den Dungen JA, den Dunnen WF, Geertzen JH
Amputation for long-standing, therapy-resistant type-I complex regional pain syndrome
J Bone Joint Surg Am. 2012 Dec 19;94(24):2263-8.