A woman who raised £160,000 for lifesaving surgery in Spain is now facing the same ordeal after her symptoms returned when she claims an NHS hospital 'didn't follow instructions' during a knee operation.
Melanie Hartshorn made an emergency trip to Barcelona last week after telling doctors there that the symptoms of agonising Ehlers Danlos Syndrome (EDS) had started to return.
The 29-year-old said she 'burst into tears' when she saw the damage, which was 'much worse than we thought, much more serious than we imagined, and way more urgent'.
Graduate Melanie, from Cramlington, Northumberland, had just begun to live life to the full after years confined to her bed in excruciating pain.
Wellwishers raised £160,000 for surgery in 2017 that saw her rib used to fuse her skull and neck together.
But earlier this year she underwent surgery in the North East to repair torn knee cartilage, and was supposed to have fibre optic intubation - when a tube is placed in the breathing passage while the patient is awake - to protect her fusion.
"This was discussed with the anaesthetics team and I wore my neck brace to theatre," Melanie said.
"Unfortunately these instructions weren’t followed.
"Since then my symptoms rapidly returned and my condition deteriorated."
The results of the tests in Spain last week show that there is a clear break in Melanie's neck fusion which is 'very unstable', and there are loose screws and the top and bottom of her fusion.
She said: "This is very dangerous and my life is at risk so I need to undergo surgery in Barcelona urgently - my surgeon advised me to stay in Spain- but I needed to return home to fundraise.
"The surgery is much more complicated and extensive than my last one due to the damage that’s now present.
"The skull plate will need to be moved higher up the back of my skull, all metalwork removed, then loose screws replaced and fusion extended to T5.
"As you can imagine I’m devastated about this, and was shocked to see the damage on the scans myself. I burst into tears.
"But now I must focus on saving my life. I was doing so well before, and need to get back to that as soon as possible."
Before her operation, Melanie had lived with seizures, tremors and even a risk of death due to the high potential for skull dislocation.
For the last two years, she's been able to sit up in a wheelchair so has been able to volunteer at a local primary school and enjoys cinema trips, nights out with her friends and going to concerts.
Six weeks ago she underwent an operation on her knee to deal with an old dislocation. But awaking from general anaesthetic she realised with horror that her symptoms had begun to return.
Melanie has provisionally booked for surgery on July 12 - and has just three weeks to raise the remaining £70,000.
She is appealing for anyone to help her with sponsored events and fundraisers as she faces a race against time.
To donate to the appeal go to https://www.gofundme.com/melanies-mission-to-live
