Sockets and Stumps and Pain
THEY DO IT UNTIL SUDDENLY THEY CAN’T, in the months during and after Headley, and now, years later. No matter how fit, or how far they have travelled, no matter how good it has been, every day the sockets and stumps found a way to remind them that it will never be all good, all improvement. Tweak medication, rest, ice bath maybe, massage and physio directly on the stump, and slowly things calm down. But not always. And this is what happens to everyone who has left part of themselves behind in Afghanistan, eventually. Where they find themselves is not necessarily, despite the work and the questions and the garden, a very hopeful place. A hard question: why do prosthetic limbs have the least chance of matching the performance of the human body?
For a start, everything anyone can think of can go wrong. Sometimes, many times, a problem with socket fit for no particular reason means something is going wrong deep inside the stump, changing its shape from within, and this never happens without a very great deal of pain. It can be almost anything. The bone end, neatly clipped and tidied up, shifting within the muscle mass. Bones malform, and bone grows in tissue that wasn’t even bone in the first place (more about that in the next part). Or the muscle mass can shrink back, so physios come back and work to stretch them out again. Neuromas: nerves tidied away so carefully at Birmingham swell or develop growths that are pressed upon by the bones or muscles or ulcers or scarring or movement or shifts in weight. Nerves in the flaps change and squirm, and in a matter of days they can turn the most relaxed and confident patient into a sleep-deprived, ghost-faced bundle of pain, wincing at the slightest touch, back up on the pain ladder, all the way to the top: severe pain, uncontrollable, only the strongest drugs can touch it. The healing process itself can cause what seem like endless problems months and months after the first twenty-four days, when they have started to dare to ask what next. Then scarring skin at the stump shrinking back or, worse, galloping away with itself, creating lumps and bumps and misshapes that mean it was almost not worth bothering casting a socket in the first place.
Even if all that is going well, physio, rehab, walking, balancing, falling, just not being in a chair, all of this puts pressure on muscles that they have to learn to adapt to or strain and fail. Ulceration happens when a strained muscle can no longer recover, so the muscle tissue starts to break down instead of mend, closing off capillaries, shutting off blood flow not all the way to point zero but a little death nonetheless: no blood, no oxygen, no nutrients, no energy, so the muscle and surrounding deep soft tissues start to atrophy. And no matter how many laps of the test track they’ve done, what got them to Headley in the first place has wrecked their immune system, so infection finds those little patches of them that have begun to buckle under strain and take hold. But this all takes time. These pressure ulcers happen first without pain, while they are out in the garden, on the train to London, beating someone at something and going to bed happy. Then pain, and, last of all, the injury happening on the inside spreads and spreads and is finally visible on the outside, on their skin, tender to the touch but deeply damaged all the way through.
There’s a new bit of kit, a hand-held scanner that can detect the deep tissue damage early before it makes it to the outside, but this isn’t a rehab bit of kit, it’s hospital kit, because pressure ulcers are usually found on ill people, who can’t move, stuck in bed – bed sores are pressure ulcers – who have to be moved by other people. Stump ulcers happen to people trying every waking moment of every day to be moving, faster and better, months after they have left Headley and gone home to their new lives. Treatment is off the legs, even for small ulcers, and special creams and dressings. But the big ones may need debriding or surgery, so back to the past, back in their chair, almost back to Bastion in their stress levels, and almost certainly going back to Birmingham for more surgery.
The plastic surgeon got used to seeing people months or even years after he had first seen them, for a second, late stage of reconstruction, cutting away even more of what had been so carefully saved and then worked on at Headley. All of the hard work wasted, back on the table, pushing the stump higher, more difficult to find skin and muscle for flaps. De-gloving the stump: sometimes the surgeons end up redoing the entire envelope of soft tissue around the amputation site from scratch. And they know that they will be seeing the same patients for four or five years – same problems, stump and socket, in or out of the army, and we still don’t know for how long this will go on.1 And the surgeons can tell immediately the operation begins that these are patients for whom the deal has been done, who are years after their original casualty physiologically different from everyone else who passes through their hands. Difficult cases, difficult questions: has it all been worth it? Do I have to go through all that again? Will I ever be out of this chair? Back to square one, back to Headley, start again. Square one seems huge the second time they land on it, but the physios are there, and they haven’t forgotten and they know what it is to start again. So a new socket, roll on the sock, up to a stand.
Back in 1918 pain was almost inevitable. One senior orthopaedic surgeon in desperation wrote after the First World War that he had a patient whose prosthetic had fitted beautifully and worked beautifully, and so he had emigrated to the West Indies to begin a new life farming a plantation there (fresh air worked as well then as it does now).2 But then the pain had come back, so bad he could do nothing but take his savings and use them to pay his way back to Britain, back to the surgeon to see what he could do about it. And what he could do about it was very little, except perhaps to operate again and, when that failed, give the patient a list of drugs for him to take. Locomotor systems failing, not because of mechanical failure, because that was mostly fixable, but because of pain. Pain followed the casualties of the First World War home, along the train tracks, into the hospitals, paused for breath and then back again, months after everyone thought the new system was starting to work. Pain left patients healed but not cured, knocked them off their new delicate and complicated artificial limbs, warped and twisted the stumps so they no longer fitted the sockets made for them.3 Disability was the condition, but pain was the aftermath that everyone dreaded.
In the twenty-first century, whether a military or civilian sufferer, ‘post-amputation pain remains an extremely challenging pain condition to treat’, according to one of the leading pain journals in the world.4 Research done at Headley in the last year of the war in Afghanistan found that at least 65 per cent of their patients suffered from pain in their stumps severe enough for them to classify it as treatment failure.5 Treatment failure meant back to the multidisciplinary team meeting and probably adjustments to meds, if there was no other obvious reason for the pain, and then hope.
It is much the same thing with the phantoms their patients brought with them from the wards at Birmingham, where the nurses had tried to help. At Headley half of amputee patients suffered from phantom limb pain bad enough to be distressing. At Headley treatment for phantom limb pain was about everything but changing meds. ‘The patient’, wrote the physio and the pain consultant, ‘has to understand that [meds] are not going to remove all pain. Indeed, the degree of pain relief […] is almost irrelevant.’6 So, in addition to irrelevant meds, patients were encouraged to try physical therapies: looking at their stumps in mirrors, looking at themselves using their prosthetics in mirrors, helping their own brain to adjust, acupuncture, special exercises. Same principle as at Birmingham, giving the patient a measure of control. That helps, a little, hopefully, but there is no research to support it all so far.
These numbers are almost exactly the same as those for the amputee cohort in the First World War. This means that, over a century, we have made no further progress in treating chronic, life-wrecking pain in military amputees.7 A century, and a cohort of 41,000, with nothing to show for it – not just for soldiers but for everyone whose lives are wracked by pain today. This is what happens when specialist centres and networks are closed down, and the cohort, the knowledge and expertise are scattered and unable to consolidate what they learned to make progress not only for their military patients but beyond. This is the sort of thing I go on about in meetings. A century wasted, and it can’t be allowed to happen again. The pain consultant, who conceived the system used in Afghanistan of pain care from point of wounding, hopes that ‘what occurs here must link with what has gone before and what will follow.’8 The continuum of pain care must go beyond Headley, because the terms of the deal done for their lives demand it. The consultant hopes that there will be some way of having a thirty-year, 13,000-mile pain service for every military patient he ever saw, and there are some reasons for him to be hopeful. But not many, and hope is not a tactic.9