A BRITISH woman with a rare condition that means a simple turn of her head could be fatal is hoping to travel to Barcelona for pioneering surgery.
Rachel Pighills, 33, and her husband Guy, 39 have been trying to raise the €150,000 necessary for her rare condition to be operated on – only three surgeons in the world know how to do it, and one of them is in Spain.
She explains that, in layman's terms, her neck cannot withstand the weight of her head, and if she turns her head to the left, she could partially dislocate the cervical column in her neck.
If it dislocates completely, it would be 'like an internal decapitation', says Rachel, and she would 'die instantly'.
Guy says he worries all the time when he is at work.
Rachel wears a collar, but only for four hours a day, since any longer would mean losing muscle mass in her neck and head, which would exacerbate the problem.
Her condition is known as Basilar Invagination, which means the upper part of her cervical column pushes against the base of her skull.
She also has an atlantoaxial instability, or compression of the spinal cord, making it difficult to move her neck, and platybasia, a developmental deformity of the base of the skull which flattens it and pushes the vertebrae into it, and cervical medullary syndrome, which is caused by her craniocervical instability and brainstem compression.
Rachel urgently needs a double operation – firstly, to remove the axial vertebra which is compressing her brainstem, and secondly, to fuse her skull and neck together.
So far, she and Guy have saved up €14,000 towards her operation, which cannot be carried out in the UK as no surgeon there is able to perform it.
But the thought of the flight to Barcelona terrifies the couple – an abrupt movement by the aircraft could cause a dislocation.
They say they are 'trying to say strong' for their young son's sake.
The supermarket manager says: “I'm thinking about the pressure in the cabin, the force of take-off and being trapped against the back of a chair – and I don't know how my body's going to react.”
She was diagnosed in July, and says she 'just wants to live a normal life' with 'a bit of independence'.
“I'll be at work and scared to death thinking, what am I going to find when I get home? Will she be okay?” Says Guy.
Their trip to Barcelona will take four days, and it is not clear whether Rachel will be able to undergo the operation during this time or whether more cash will be needed.
If she has surgery and all goes according to plan, her complex and life-threatening condition will be completely cured.
