A woman who has spent the majority of her life lying down is due to have the second part of her potentially life-saving operation in the new year after returning home for Christmas.
Melanie Hartshorn, from Cramlington, Northumberland, suffers from a rare condition called Ehlers-Danlos Syndrome (EDS). It causes the 33-year-old's skull to dislocate from her neck and spine and she spends most of her time confined to her bed.
For the last 18 months, Melanie has been kept alive by a surgical halo vest. However she said the halo was only a short-term fix and she needed to raise £100,000 for an operation to fuse her neck to her spine.
At the beginning of October, Melanie travelled to Barcelona in Spain to undergo the major operation, which is not available on the NHS. She raised more than £84,000 on her Go Fund Me page and a "very kind person" offered her a loan as a last resort to ensure the surgery went ahead.
As Melanie's body was not strong enough, only the first part of the surgery, which was carried out through her throat, was completed. She was placed into an induced coma on the intensive care unit (ICU) where she recovered from surgery for four-and-a-half weeks.
Earlier this month, Melanie had her halo removed and left hospital. She has been staying at an apartment in Barcelona and had a follow up appointment with her neurosurgeon Dr. Vicenç Gilete García on Thursday.
Melanie has described the first surgery as a "huge success". She said: "I’m alive, out of the the halo after 18months… seizure free, and breathing!" However she said her neck is "very unstable" and has become more so since the halo was removed.
Melanie said she is not strong enough to undergo the second operation yet but it needs to be carried out as soon as possible so the instability does not permanently damage the work that has been done.
She plans to return home to Northumberland for Christmas before flying back out to Spain in the new year for the surgery.
Melanie posted on Facebook: "I’m not strong enough for that surgery yet as I’m still healing from the last one- so it will probably be done in January. However today I was fitted with a new brace to try and stabilise it so I can sit up again, to fly home!
"I’ve been unable to sit up since leaving hospital, and have been in a lot of pain with my neck popping constantly. So the hope is that with this new brace, I’ll be able to sit up again to fly home for Christmas, and then return in January for the second surgery.
"I'm super grateful to the team here for looking after me so well, and of course to everyone who donated and helped to save my life, and I hope you will all continue to fundraise and support me to have this last surgery ASAP!
"The overwhelming worry we all have is that if the next surgery is not done ASAP, the instability could permanently damage the work that has just been done… and we simply can’t let that happen!"
Melanie spent longer than expected in ICU, which means she has to pay out more for her hospital care. Her fundraising total has now been increased to £150,000 and she has so fair raised £92,620.
Any money donated will be used to pay for:
- Her last surgery which she hopes will take place in January 2023
- The cost of her extended stay in ICU
- Loans received so she could have the surgery
Melanie previously had her neck and spine fused during a major operation in Barcelona in 2017. However four broken titanium screws in her vertebrae have caused the fusions to be unstable.
She said this time the surgery is even more risky as it will have to be carried out through her throat, as it's not possible to operate on her back. However she said the operation is the only way to save her life.
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