Ellie has been plagued by health problems since being diagnosed with a Chiari malformation and syringomyelia at the age of 12 – and desperately needs surgery.
Ellie is 18 from near Sunderland. She had major neurosurgery soon after diagnosis to prevent deterioration of these conditions. Unfortunately, the surgery triggered an avalanche of symptoms which baffled her treating doctors. She developed hydrocephalus which was treated with a VP shunt, also has dysautonomia and was left very unwell with constant head pain, dizziness, nausea and vomiting.
These symptoms continued to deteriorate and new symptoms crept in. Numerous hospital admissions followed. At age 16 Ellie was finally diagnosed with hypermobile Ehlers Danlos Syndrome (EDS) which is caused by a problem with her connective tissue in ligaments, blood vessels, valves, digestive tract.
Ellie underwent upright MRI imaging to investigate whether she had craniocervical instability (where the skull is unstable in relation to the neck, often described as like a pumpkin on a toothpick) which often goes hand in hand with Chiari and EDS in combination. Craniocervical instability was confirmed.
Having sought a number of surgical opinions the consensus is that fusion surgery (straightening the brainstem and inserting rods and screws into the skull/upper spine to stabilise the head/neck) can reduce head pain and brainstem symptoms.
A further deterioration in symptoms this year has led to a new diagnosis of severe gastroparesis which means she is unable to digest much food and vomits daily. She is unable to do any of the things healthy teenagers do, rarely feels well enough to get out of the house, hasn’t been well enough for school all year and spends much of the day lying down to try and relieve symptoms.
Ellie’s mum Janine has also been diagnosed with the same condition.
Surgeons in Barcelona with experience of treating these conditions have offered to help both Eleanor and Janine, hopefully operating on Ellie in September. Surgeons are confident that both Ellie and Janine’s quality of life will be much improved as a result of the surgery. Without it both will continue to deteriorate.