Hi, my name is Becky. I suffer with Craniocervical Instability (CCI) and Tethered Cord due to a connective tissue and bone disorder (TRPV4 similar to Ehlers Danlos Syndrome). It all became symptomatic after breaking my C2 vertebrae in April 2021. The NHS did not pick up my fracture until 10 months after my fall. They are saying it wouldn't be causing symptoms. Unfortunately, I damaged my craniocervical ligaments and they aren't healing due to a faulty collagen disorder. It turns out that I also have tethered cord syndrome (since birth) that became symptomatic from CCI.
I have been offered life improving surgery by Dr Oliver in Barcelona, Spain. He is one of the few experts worldwide that can do this surgery. Unfortunately, British people with CCI are forced to go abroad for this surgery. I have many CCI friends and I do not know of a single one who can get this surgery on NHS as this condition is so complex - it needs a true expert.
Before this I was a postwoman for Royal Mail for five years. Now, I had to spend all my savings trying to get answers, sell my car, and am ill health retired. I am in debilitating pain everyday. I have issues with holding my head up, swallowing, walking, temperature dysregulation, stiff legs - I spend a lot of my time lying flat as I am forced to. I am suffering for having a rare condition that NHS won't treat. Many that managed to raise money for surgery in Spain are now doing much better, some are even working two jobs. I would like to have a quality of life back if I can. The amount to raise seems impossible. I'm scared too as these conditions can result in paralysis.
In addition, I did have fusion in Poland with a non expert. His fusion wasn't extensive enough and the tethered cord hasn't been operated on. Dr Oliver, who is no1 in the world, says the fusion needs revising and extending to skull and the tethered cord needs releasing. I currently have no bone graft and the fusion could fail at any moment. The NHS are not helping me with this. Without this surgery in Spain, I will never get better. CCI when severe leads to death. The pain is relentless, for over a year now.I will provide all medical reports as proof in the updates. I have letters proving the fracture and I have a report arriving shortly with a quote and offer of surgery in Spain.