Learning to live with loss of a limb

KATE NEWTON

Last updated 05:00 09/04/2011

 

Of all the traumatic earthquake stories to emerge from Christchurch's rubble, Brian Coker's was one of the more horrifying.

Pinned in a stairwell in the Pyne Gould building, the last thing he remembered was rescuers cutting his trousers as they crouched next to him in a tiny gap in the wreckage.

The 52-year-old was anaesthetised and his legs were amputated with the only tools to hand – a hacksaw and a Leatherman knife – as aftershock followed by aftershock rattled the pancaked building.

He was not the only one. Eight people had limbs amputated at Christchurch Hospital in the days immediately after the quake. Three of them lost more than one limb.

Further down the track, survivors who had major orthopaedic surgery to repair a limb might choose to have it removed after all, to put an end to chronic pain.

Amputations seem like an anachronism; a throwback to some boggy World War I field hospital where medics, supplies and time were all in short supply.

But though the circumstances of Brian Coker's amputation might be exceptional, the procedure is not.

Every year, about 400 people lose limbs – eight a week, or about one each day. Last year, at least 32 of those people had more than one amputation.

Nearly 90 per cent of all amputations are of the leg, with below-knee more common than above-knee.

In total, there are more than 4000 amputees living in New Zealand at the moment – each of them having experienced the same physical and emotional loss that quake amputees are now dealing with.

"Imagine waking up [in hospital] having been in an accident," Artificial Limb Board chief executive Mervyn Monk says.

"Someone finally comes along and says, `You were mangled. Don't look now, but you've lost your leg below the knee and the other one above the knee.' How do you deal with that?"

The most surprising thing about the statistics Mr Monk's organisation collects, though, is that most amputees do have some warning.

For every person who lost a limb because of trauma or an accident last year, another three had limbs amputated because of vascular problems or diabetes – both of which can cause gangrene or constant pain due to hardening of the arteries and poor circulation.

Karen Michalanney, the field officer for the Amputee Society of Wellington, says the growth in obesity-related diabetes is a "big, big issue".

"[Diabetic] amputee numbers have been growing – it's quite frightening to see."

 

The people losing limbs to disease are also getting younger, she says.

"There's one guy that's stuck in my mind – he was 35 and a big fellow. When I went in to see him, he cried and he cried. He said, `People warned me, they told me.' Later on he rang me and said, `I'm having the other leg off tomorrow'.

"[He] lost his other leg and he was dead within six months. That was something that never should have happened."

Everyone reacts to amputation differently, but those who have planned amputations do have the advantage of being able to grieve before the surgery, Mr Monk says.

"[If you're] an accident amputee, you wake up and your leg's gone – bang, that's it."

AMPUTATION AND RELIEF

Many "intending amputees" will be able to discuss the operation with their surgeon and often they'll have a pre-surgery visit to one of the five artificial limb centres around New Zealand, which create prosthetic limbs and provide physio and rehabilitation after the amputation.

An amputation can sometimes even be a relief, Wellington orthopaedic surgeon Grant Kiddle says.

"The chronic disease group, generally speaking, you're making them better because you're dealing with the problem of a chronically painful limb. To remove that diseased limb is often an improvement in their lifestyle."

It is still not an easy mental or physical adjustment.

Philippa Williams, a physiotherapist at the Wellington Artificial Limb Centre, says many new amputees find their stump difficult and even distressing to get used to.

"For some people that's the first hurdle to get over. The dressings will be changed and they'll close their eyes – they won't even look."

Hospital physios encourage people early on to begin bandaging their own stump, once it's begun to heal.

"That gives it a good shape but it's quite good psychologically too.

"We encourage the physios to get them touching it, washing it with a flannel."

Ms Michalanney says having the chance to see the removed limb also helps some people.

"In the past, you never saw your limb. It was taken away and it went off to the hospital incinerators.

"You're asked now if you'd like the body part returned."

Some people are happy just to see their leg in the mortuary, while others take it home for burial or cremation. "I think it's an important thing that people are now learning to say, `Look, leg – you've helped me get so far, thank you, but it's time to say goodbye'."

For practical and psychological reasons, the artificial limb centres try to see amputees as soon as possible once their residual limb has healed, Mrs Williams says.

"Coming here is a great opportunity for them to meet other amputees."

The centre also carries out an assessment to check up on the person's emotional wellbeing.

"That can be hard – with some of them we get tears. There's always going to be, with the trauma patients, a bit of anger."

A cast of their stump is taken, usually with plaster of paris, which is used to craft a prosthesis that fits snugly over the residual limb.

Before the prosthesis is made, staff also check the person's interests, taking into account any sports or activities they might still be able to enjoy with the right sort of prosthesis.

Some people, either of their own accord or after talking to centre staff, decide that they don't want an artificial limb.

Of the 399 people referred to the centres last year, 84 ended up not having a limb made for them.

Elderly people are more likely not to want a limb, and people who have problems with their other leg might not be able to use a prosthesis.

Amputees have achieved some incredible physical feats – double amputee Mark Inglis scaled Mt Everest in 2006; our Paralympian amputees would blitz most able-bodied Kiwis.

For most amputees though, a much more basic level of mobility will be restored, Mrs Williams says. "Sometimes when they get up and try the leg, it's not what they thought it was going to be, and that can be quite a shock."

Even just learning to take the artificial limb on and off can be a challenge – and a handful will give up at that point.

Still, many persevere, with a high proportion returning to their old pastimes, including work.

There's a 62 per cent labour participation rate among working-age amputees, which compares well with the 45 per cent participation rate of New Zealanders with a disability.

About a fifth of amputees do some kind of volunteer work.

 

PHANTOM PAIN

As time goes by, longer-term problems can niggle. Ms Michalanney says: "I get a lot of phone calls and I've always made it a rule that if it's something urgent, I don't care what time of the day or the night it is – they should call," "Often it's phantom pain and they've tried everything and they're beside themselves."

A below-knee amputee herself, after an accident in 1979 when her foot was crushed by a fuel drum, she describes her own phantom pain as a surge of pain through her now non-existent foot. More than 30 years later, it still bugs her. Continual pins and needles is a common sensation, along with phantom limb – the sensation that the amputated limb is still there.

Everyone has their own way of coping, she says. "Some people have their wacky-baccy growing just for them."

Of all the frustrations amputees encounter, though, there's one that's universally irksome: other people's misconceptions.

"People think that when you lose a limb, you've lost your brain as well," Ms Michalanney says.

"People talk to your friend instead of talking to you."

Mr Monk agrees.

"Amputees have some limitations but they're not disabled."

 

THE AMPUTEE: It took just five seconds for a life to change for ever

When Ben Hekenui heard the baler start up at Taranaki Recyclers' plant in New Plymouth, he knew he was in trouble.

Lying at the bottom of the machine's chute after toppling in, the former plant worker, now 39, realised he had about five seconds to get up and back out the way he came.

"I got myself up – just to my waist – but by the time I looked down to see if my legs were up it was too late."

Instead, the baler closed around his legs, severing one below the knee and the other above.

Nearly three years later, he has vivid memories of what happened next. "My colleague had me sitting in her lap and I could just feel all this pain. I knew, even though I couldn't see it, that my legs were gone."

His wife, Chrissy, was distraught when she arrived at the hospital emergency department.

"[A doctor] took her aside and told her what had happened. I could just see her face.

"We don't really mention that day much now."

In the first few days and weeks after surgery, he was implausibly positive, cracking black jokes – the day after surgery, he told his son to bring some shoes for him when he next visited.

"That was my way of not taking it too hard."

His family had their own way of grieving. "One of the first things my dad said to me was he wanted to go and get my legs and put them in the right place, where they should be.

"My dad went to the funeral place and got a nice little coffin and they took them back up to where my mother is [buried]."

He now gets around on two prosthetic legs, learning to walk with them using crutches at first, then a walking stick, then balancing on his own.

"I did get frustrated. But in the end I just had to be patient and carry on."

A keen rugby and league player before his accident, he still coaches kids' teams but yearns to be part of the action.

"That's the most frustrating thing – seeing them out there and thinking, `I wish I was out there'."

THE SURGEON: Below-knee amputation most most common, says surgeon

An amputation requires a lot of planning, Grant Kiddle says.

The Wellington orthopaedic surgeon has been doing amputations for more than 10 years and says every part of the limb must be considered. "You've got to have healthy skin that will heal well and have viable bone."

The first thing to decide is what level the amputation will be done at.

"By far the most common one is a below-knee amputation."

Sometimes if there is going to be a very short stump or residual limb – which means a prosthetic cannot be fitted – the limb will be amputated higher, for example, above the knee.

As much as possible, amputations are done under tourniquet to prevent bleeding, though that cannot always be done in a trauma situation.

The extreme is an amputation done at the site of an accident, as happened in Christchurch after the February earthquake, and as often happens after car crashes.

Those amputations are followed up with secondary surgery, often to amputate higher because more tissue has died in the meantime.

- The Dominion Post