Weʼre raising £35,000 to help Andreia live a pain free life with ASC scoliosis surgery
- Jersey, Channel Islands
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When I was 12 years old on Christmas Day, my mother noticed I had a sort of 'hunched-back' as I bent over to pick up the dog. After visiting our GP, we were referred to a scoliosis spine centre in Southampton (in the United Kingdom). We live on the small island of Jersey and so do not have many links with hospitals and also we do not have extensive medical care and often need to fly over to the mainland for specialised support. Upon my first visit to the scoliosis spine centre in Southampton I discovered I had severe scoliosis. Scoliosis is a curvature of the spine, which if severe enough can lead to a lifetime of debilitating pain and difficulty breathing. However, at the time of my first appointment, I had nearly done growing and was not in any pain. Therefore I went to Southampton twice a year so the surgeon could monitor my spine growth. My curve measured at 45 degrees upper and around similar degrees lower at the time. I began to do things to help with my scoliosis and attempt to maintain flexibility including yoga, swimming, physio, and visiting a osteopath on a regular basis. My spine was getting worse by one degree a year but the surgeon said that, as I did not experience any pain from my scoliosis and I was nearly done growing, I would only need surgery (spinal fusion) for cosmetic reasons (i.e. to get rid of the hump). My parents and I decided to go against surgery as I could deal with the hump and since I had a relatively normal life we thought surgery was not worth it. I was discharged from the hospital in Southampton at around 16 years of age. However, around 6 years ago when I was 21 I started experiencing a lot of chronic back pain. I am now at the stage where I am in immense pain most of the day and the curve feels as if it is pressing on my lungs and affecting my breathing. I have been off work on numerous occasions throughout the year as sometimes the pain is so bad I cannot get out of bed. The pain centers on where the hump is. I leave work everyday, when I can manage it through the day, and have to go home to sleep for a few hours due to the exhaustion of having to put up the pain and try to go on with the day. I am a teacher in a secondary school which is a demanding and stressful job. I want to do the best for my students and hate being off work. My mum says that I look like I "literally" carry the world on my shoulders. I am now 27 and my curvature is 54 degrees upper and 44 degrees lower. I met with Dr Olaverri in Barcelona after joining the VBT/ASC scoliosis surgery group on facebook to pursue this surgery option as it is a type of surgery that will allow me to maintain flexibility in my spine and it is less invasive that spinal fusion. The benefits to this surgery far outweigh those of spinal fusion and the risks seem to be much less. The only option offered in the UK on the NHS currently is spinal fusion. This involves two rods being screwed to either side of my spine, causing the spine to fuse into a solid mass. Although this would straighten my spine, this would also mean I would be unable to bend my back. There are higher risks of osteoarthritis and osteoporosis of the spine later in life after fusion. After doing lots of research into the success/risk of spinal fusion it is clear that scoliosis brings a lot of complications for most people! The newer non fusion surgery called ASC, anterior scoliosis correction, is much less invasive, less complications, and keeps the flexibility of the spine. This surgery has been performed regularly in the US since 2012 with good results. Instead of fusing the spine, a flexible cord is attached to the outside of the curve, pulling it partially straight during surgery. Much like braces work on teeth. This surgery would hopefully allow me to live a normal pain free and flexible life. Once fusion is done there is no going back. Frustratingly VBT was offered for a short time in 2016 on the NHS, but funding has been withdrawn for the time being while longer term results are being monitored. In a few years time this will no doubt be offered again on the NHS, I believe it is the future of spinal surgery, but this may be too late for me. I am struggling to continue another day with the pain I am suffering. I would also like to be a mum in the very near future but know this won't be an option with the current state of my back as doing the littlest tasks such as washing the dishes leaves me in anguish. From my latest X-ray using the EOS system with Dr Olaverri, he showed me that my discs have eroded which is the reason I now experience tremendous pain but never did during my adolescence. Many people from the UK have already been to Turkey, Germany, Spain and the US for this surgery with great results. I met the surgeon in Barcelona two weeks ago and he told me I am a good candidate. This was an incredibly emotional day for me. After years of suffering from pain I burst into tears at finally being given hope by someone in the medical professional and seeing a "way out". I met many spinal fusion surgeons in the UK who were very patronizing and would not acknowledge my scoliosis as being the cause of my pain (even though the pain is where the curve is). I know many other fellow scoliosis sufferers have also had the same experience from having chatted to them about this on the VBT/ASC scoliosis facebook page. Dr Olaverri gave me hope. I have provisionally booked in for ASC surgery in Barcelona, at the end of May, hoping that I can somehow get money together for this. The surgery itself costs 50,000 euros. My parents have agreed to pull what they have together and help me. However, I do not see a way of gathering the whole money alone. I do not have any health insurance and we do not have an insurance system in place in Jersey to cover this. I am so very grateful for any donation to help, big or small. This will literally be life changing for me. I would be able to live my life like a normal person. I will continue to share my journey on here from now until post-surgery. Thank you from the bottom of my heart and from that of my family who love me very dearly. xxx
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Mar 6, 2019
Dear Andrea, I really hope you can raise the money, Dr Olaverri is a wonderful surgeon. Wishing you all the very best in your journey xx
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