Bring Vertebral Body Tethering (VBT) Surgery to the UK for Children with Scoliosis
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Our Grandson Tyler turned 9 in August 2017. His Mummy (our daughter , Natasha) noticed something wasn't right with his back in early April 2016 so she made an appointment with their Doctor. The Doctor noticed that Tyler had a curve in his spine (scoliosis) and something wasn't right so he went from going to the Doctors appointment to see consultants at Lincoln County Hospital who then referred him to Sheffield Children's Hospital who did an MRI scan on his spine; Tyler was then recalled for another MRI but this time with dye to look at his brain. He was found to have not only the curve in his spine but also two other conditions called Syringomyelia which is a rare disorder where cysts forms within the spinal cord and Chiari Malformation where the lower part of the brain pushes down into the spinal canal. The consultants at Sheffield Children's Hospital spoke to Tyler's Mum and to Tyler about surgery for the Chiari Malformation as the malformation was putting pressure on the brainstem and spinal cord and was obstructing the flow of fluid around the brain and spinal cord. The decision wasn't an easy one as there was a chance of complications from the surgery but the symptoms endured daily would be worse as within months Tyler would have been paralysed and unable to do what a child his age loved doing; his passion is football but he wouldn't have been able to walk, possibly talk, swallow or use his hands. On 8th December 2016 Tyler was put into the hands of the surgeon for his brain surgery on the malformation - four and half hours later he was back on the ward at Sheffield Children's Hospital but has since had to have more MRI scans, numerous hospital visits etc but the surgery although helped greatly with the pressure the syringomyelia and the scoliosis were still there ! Since surgery the curve in his spine has progressed to 61 degrees and he now has to wear a SpineCor Brace for 20 hours a day and is suffering immensely with pain, breathing problems and posture. Tyler also suffers from dizziness, severe headaches, balance issues, nose bleeds and numbness and tingling due to the Chiari and Syringomyelia. Like a lot of children Tyler recently wrote his Christmas Present List for Santa and he asked for a scooter, chocolate, a football and the last two brought us all to tears ... for my back to get better and to have no more pain ! The story of Tyler's List to Santa has gone into the local paper (The Lincolnshire Echo) and was then picked up by the Daily Mirror and the Daily Mail. This petition is to try and influence and impact on the decision to bring Vertebral Body Tethering (VBT) Surgery to the UK ... it is currently only available in the USA and Germany but the costs even for Germany are in excess of £50,000. We have also spoken to a consultant in London who has carried out this surgery and several other people who believe this is the best way forward for Tyler due to his age and the degree of his curve. If Tyler has the traditonal surgery he will have to have the rigid rods that would be inserted into his back adjusted each time he has a growth spurt (which would mean another 4/5 surgeries) and he will no longer be able to play his beloved football (he is actually very talented and could go far as a left footer) but if he had the VBT surgery which is a treatment used in children with scoliosis the screws which are put in each vertebra (bone of the spine) are connected by a flexible ‘cord’ which allows growth and preserves spine movement but would also mean that each growth spurt wouldn't end up in more surgery. Please sign this petition to try and help us get the treatment here in the UK ... not only for Tyler but for other children with scoliosis too.
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