Lois Rogers

Journalist and Communicator

‘I have a constant burning sensation down through my leg and foot’: The amputees in agony from limbs no longer there

People

The Daily Mail 23 February 2015

Two weeks after her 41st birthday, Sue Cook’s life changed for ever.

She was on a pheasant shoot when she was injured in a freak accident.

A woman standing near her failed to unload the unused cartridges in her gun.

As she put it away, both barrels went off.

‘I looked down and stared at my left wellington boot. I couldn’t see blood, but it appeared to be on fire,’ says Sue, now 45, a marketing specialist in Stamford, Lincolnshire.

‘Then I heard this terrible screaming — it was me. I was in agony.’

Sue was taken by helicopter to Addenbrooke’s Hospital, Cambridge.

The lead shot had smashed her lower leg and foot to a pulp. Two days later, she woke up to discover her left leg had been amputated through the middle of the knee joint.

Four years on, she is struggling to cope — and not just because she has lost a leg.

For though it isn’t there, the missing leg causes Sue constant pain.

‘It is excruciating,’ she says. ‘I have a constant burning sensation down through my leg and foot, even though neither of them is there any more.

‘The only thing that has given any relief is acupuncture. Even then, the pain comes straight back within a couple of hours.’

‘The only thing that has given any relief is acupuncture,’ said Sue

Sue has phantom limb pain, a medically recognised condition that means pain messages are transmitted to the brain from a body part that is no longer there.

Every year, more than 6,000 people have limbs amputated, and eight out of ten will suffer from phantom limb pain.

The majority of amputations are the result of type 2 diabetes or complications of obesity and smoking, as they can destroy the circulation, causing body parts to die.

Doctors do not understand why phantom limb pain happens.

It is thought to be caused by damaged nerves leading to misfiring signals in the brain and the emotional trauma suffered when the limb was lost.

‘Some say the pain is like having boiling water poured over the limb,’ says Dr Fergus Jepson, a former orthopaedic surgeon turned rehabilitation specialist.

He runs a mobility rehab centre at the Royal Preston Hospital in Lancashire and is a national expert on phantom limb pain.

He says strong painkillers can help, including tranquillisers such as diazepam, patches releasing anaesthetic drugs and capsaicin cream based on chillies, which produces numbness after the burning sensation wears off.

Many patients use mirror-box therapy: they re-programme the jumbled nerves in their brains by moving their intact leg next to a mirror.

Seeing an image of the leg tricks the brain into thinking the missing limb is back.

This can stop the pain signals and lead to permanent relief, though the mechanism for this remains unknown.

Other amputees use ‘stump socks’ made from a material that blocks electromagnetism, a controversial technique that seems to stop nerve stimulation.

But Dr Jepson says hypnosis is the most effective treatment.

‘Patients talk about their foot being trapped in a painful, twisted position or stuck in a vice.

‘By moving it in their mind, they can release it,’ he says.

‘Sometimes, we can use radio-frequency waves to destroy the malfunctioning nerve.

‘But they also need to process their anger and trauma at the amputation, which can have a huge effect on the physical pain they feel.’

However, for some patients the pain is difficult to treat.

Mother-of-two Kelly Dixon, from Saltburn, North Yorkshire, lost a leg due to nerve damage.

She was on her side for a ten-hour operation to repair a shoulder injury following a car accident in 2007.

The shoulder was fine, but the nerve down the side of her body was compressed, causing untreatable pain from her left foot.

The foot was amputated in 2011 — an extreme, but medically recognised solution to intractable pain.

Sue has phantom limb pain, a medically recognised condition that means pain messages are transmitted to the brain from a body part that is no longer there

However, phantom limb pain was worse than the previous pain and nothing she tried seemed to help.

In late 2012, Kelly begged to be given a controversial spinal implant, designed to block pain signals from her leg to her brain.

The device, being trialled in five British centres, involves two implanted wires connected to points in the spinal cord, which lead to a battery under the skin of the stomach.

Electrical pulses to block pain signals from the damaged nerve are turned up or down by a device like a TV remote control.

The operation carries risks of paralysis and damage to bowel and bladder function, but so far the results have been good.

Kelly, 35, says it was a risk she was willing to take: ‘My life was over before this. I was on so much morphine I could hardly function.’

Sam Eldabe, a specialist in anaesthesia and pain management at the James Cook University Hospital in Middlesbrough, where Kelly was treated, said the implant tackles complex regional pain syndrome — pain from a phantom source.

‘This device gives us the ability to target pain and neutralise specific areas,’ he says.

‘It is producing much better results than anything we have used before.’

Meanwhile, Sue has started a course of mirror therapy.

‘It is working so far,’ she says. ‘The idea of living with this pain for the rest of my days doesn’t bear thinking about.’

Written by Lois Rogers