I raised £10k online... to have my leg amputated
FOR five years, Hope Gordon pleaded with NHS doctors to help her achieve one of her greatest ambitions – to have her left leg amputated.
Every touch, every movement, caused her excruciating nerve pain, leading to her becoming wheelchair-bound at the age of 16, but every request to the NHS to have the leg removed was rejected.
Now, in a remarkable show of determination and courage, the 21-year-old has managed to fulfil her dearest wish – and has finally had the limb removed after raising £10,000 through a massive crowd-funding effort to pay for the operation to be carried out privately.
Many will question the reasons behind such a decision but, for Hope, there has never been anything but absolute certainty that it was the right thing to do.
Recovering following the surgery which took place five days ago, she told The Scottish Mail on Sunday: ‘I have absolutely no regrets. I have lived with this pain since I was 12 years old and it has gone now. I feel as if I’ve been given a brand new life. There is not a single bit of that leg that I’m going to miss.’
Hope, from Rogart, in Sutherland, decided to take matters into her own hands after doctors declined to bend NHS guidelines which stipulate amputation is not an option for the rare condition she suffered from – complex regional pain syndrome (CRPS) – which they said should be managed through pain relief and physiotherapy.
They also warned there was a chance that ‘phantom’ nerve pain would remain,
‘There’s not a single bit of that leg I’m going to miss’
even after amputation, or that there was as much as a 99 per cent possibility it would move elsewhere.
She said: ‘I was living with a leg that felt as if it had been permanently wrapped in barbed wire and set on fire. I know some people will judge me and think I’ve made a big mistake. But unless someone has lived with that kind of pain, it’s difficult to understand how it affects your life.
‘I’ve known for a long time amputation was the only way I could even begin to start living a normal life. I couldn’t have gone on the way I was. I couldn’t go out because I was scared people would knock into it. I’m happy and relieved my leg is gone.’
Undeterred by opposition from her NHS doctors, she set about finding a surgeon who would perform the operation, and launched a crowd-funding campaign to fund the cost of going private.
Last Tuesday, in a one-and-a-halfhour operation at the Blackpool Victoria Hospital, Lancashire, her leg was amputated midway above the knee to allow for a prosthetic to be fitted at a later date.
The surgery took place only after a series of appointments and a psychological evaluation to discuss how amputation might impact on her life and whether she had seriously considered all the risks involved in the operation.
So far, to the surprise of the medical team who carried out the operation and even Hope herself, there has been no sign of the nerve pain that had dominated her every waking moment.
‘There has been surgical pain from the wound but no nerve pain. It’s still early days but it’s a very new experience for me and it’s great. I’ve been living with the pain for so long I’ve forgotten what it’s like not to have any.’ Prior to decid- ing to go private, Hope, an elite swimmer who has competed for Scotland in UK and international para-sport events, lodged an official appeal against the NHS refusal to amputate, but it was rejected.
Faced with the prospect of raising £10,000 to go private, the student decided to use crowd-funding to cover the costs. Launching an online appeal last year, the response from family, friends and complete strangers from all over the UK who read of her plight was overwhelming and her target had been reached within weeks.
She said: ‘I was surprised by the reac-
tion I got so quickly. I thought it would be amazing if we managed to raise around half through crowdfunding and the rest through fundraising events. But the fact we managed to raise so much meant it took a lot of the pressure and unnecessary stress off me and my family.’
Over the years, specialists at the Royal Hospital for Sick Children at Yorkhill, Glasgow, have tried to alleviate her chronic pain by performing several procedures, including epidurals and spinal blocks. But these only provided temporary relief and she spent lengthy spells in hospital for most of her teens as doctors tried out different techniques without success. She admits she has been met by every kind of response on her journey to this point, from abject horror at the idea of amputation to general reluctance by the medical profession to entertain the suggestion that she could be better off without it.
She said: ‘When I became an adult, I thought they would take it a bit more seriously. A lot of their reasons for not doing it are in the ethical guidelines against amputation. The general attitude I’ve had from doctors when I mention amputation and CRPS in the same sentence, is fear.
‘In my opinion many doctors are very scared of even talking about amputation to a CRPS patient. The outcome is unknown and many doctors seem to fear the unknown.
‘Finding a surgeon who was brave enough to actually go ahead and operate was the difficult part. There were concerns that I would still feel the nerve pain after the amputation or that the pain would move elsewhere in my body. But the reality was, none of them could be sure and weren’t prepared to admit that.’
The condition she has suffered from for most of her young life began sporadically as aches, similar to growing pains, in her legs as a child and became more extreme in her left limb after a PE lesson.
She recalled: ‘I didn’t have an accident or get injured, I just couldn’t walk. Then I went swimming and I came out and I was limping really badly. I just expected it to go away after a few days but it got worse and within a week I was on crutches.’
Eventually all the bones in Hope’s left ankle, foot and lower leg would fuse together into the wrong position. ‘I used to do a lot of sports,’ she said, ‘from football to badminton, hockey and horse-riding, but it got to the point that I could only swim.’
Her parents, John and Rona, a part-time swimming coach, have been supportive of her decision to go ahead with amputation throughout, having witnessed her daily struggle to have a normal life.
Just before the surgery last week, however, she admits there were a few ‘emotional’ moments with them both as they sought further reassurance from her that it was what she really wanted to do.
‘It was harder for them than it was for me,’ she says. ‘My parents were nervous but they knew I needed to have it done. I knew 100 per cent it was the right thing. But the day after the operation, they could see I looked like a new person, free of the nerve pain for the first time in years.’
She concedes that many will find it odd that she sees the removal of her limb as something to be celebrated, rather than commiserated about.
But she adds: ‘It’s like night and day for me. The prospect of being able to walk again with the help of a prosthetic leg has made the future brighter for me already, whatever happens from this point.’
‘Finding a surgeon brave enough was difficult’