A young woman from Cambridgeshire is preparing to have both legs surgically removed after they bent upwards at a 45-degree angle, leaving her in constant, excruciating pain for the past eight years.
No Other Option
Megan Dixon, 21, who also lives with functional neurological disorder (FND), says delays in receiving treatment have made amputation her only remaining option. She has been unable to walk since the age of 14.
"It was the hardest when I met with the amputate clinic and they said amputation was my best and only option," Megan said. "I was hoping deep down they would say there was another way. But this is my reality now and I haven't fully come to terms with it yet."
A Long Medical Journey
Megan first fell ill at 13 after contracting whooping cough and glandular fever. A year later, her legs began to fail entirely. Initially diagnosed with myalgic encephalomyelitis (ME), she underwent physiotherapy, but her legs became locked rigid.
"From there, I got worse and worse," she recalled. "I started to go into a comatose-like state. When I was 16, I stopped being able to sit up by myself and I started to lose the ability to speak."
At Bristol Hospital, Megan lost her speech, mobility, strength, and sight. She was diagnosed with FND, a condition where the brain struggles to send and receive signals correctly. She became paralysed from the neck down and needed an NG tube for feeding.
"I could feel my bones in my legs grating together but I kept being told the pain was in my head and it wasn't real," she said. "I was silently screaming for 24-hours a day."
Left Without Support
Upon turning 18, Megan was discharged from the children's hospital and left with no support for a year. Her legs continued to worsen. She saw six different surgeons and was turned away by five.
"When I finally found a surgeon to help me, it had been so long that the damage in my knees was irreversible," she explained. "My left knee is bent at a 45-degree angle, and my right is close behind. My only option left is amputation."
Daily Challenges
Alongside battling seizures and chronic pain, routine tasks have become enormously challenging. "I can't walk on my own so I have to bum shuffle everywhere or use my wheelchair," Megan said. "Getting from the floor to the bed is absolute agony because of the weight and pressure through my knees."
Megan is scheduled to undergo leg amputation in August and is currently raising funds for a powered wheelchair and additional medical equipment to restore her independence.
"I want to be able to go out with my partner, visiting the zoo, and have him by my side holding hands - as opposed to being on a day out with my carer," she said. "This is my last resort and my only option."
Message of Hope
Megan urges others to trust their bodies: "If something doesn't feel right in your body, please listen to it and trust yourself. For six years I was dismissed, and as a result the only surgery now available to me is, regrettably, amputation."
She added: "If you are facing amputation, I want to be honest with you - there are no words that can truly make it easier. It is a devastating and life-changing experience. All you can do is take it one day at a time. Allow yourself to feel everything that comes with this journey. Struggling doesn't mean you are weak - it means you are human."
