Lucy's Life Changing Spinal Surgery
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Lucy's Story ( 4 minute read)
Diagnosis of Scoliosis
When she was a young teenager our daughter Lucy was diagnosed with scoliosis. This cruel disease leads to the spine twisting and curving and causes pain and deformity. Unfortunately, she had 2 large curves and her spine became an “S” shape. As she grew older these curves increased in size and at one point were near 70 degrees. This condition was having a massive impact on her life leading to back pain and confidence issues. At the time she was also a very keen dancer. We felt sick at the thought that she needed surgery but with every month that passed her curves were getting bigger and we knew we had to act.
Spinal Fusion in UK
The only option in the UK to correct this is a spinal fusion. This operation involves screws, metal rods and a bone graft which would straighten her spine but fuse it all together creating one solid structure. Whilst a spinal fusion is still a very good option for some people, because of the length and size of Lucy’s two curves this would have meant the majority of her spine would need to be operated on. This would have resulted in a very stiff back and would severely limit her movement, how she bends forward etc.
A New Hope
We hoped there was another option and after online research we found out about a new pioneering operation that used a flexible plastic tether instead of metal rods.
This meant her curves would be reduced but she would keep a “functioning” spine keeping all of her flexibility and mobility. As her joints were untouched this meant that no bridges would be burnt unlike a fusion which unfortunately cannot be undone. It is also minimally invasive as no major muscles have to be cut through making recovery far quicker than a traditional fusion. The procedure was initially promised to her on NHS In London and we had a date for surgery in October 2016. We were elated with this and felt so relieved for her. However, 6 weeks before her operation we heard the devastating news that the funding had been withdrawn and her surgery was cancelled. The time following this was extremely stressful for the whole family, especially Lucy. She became very withdrawn and we felt terrible as we had built her hopes up so much. We hoped and prayed that it would be re-instated in the UK but it didn’t and after much thought, research and careful consideration we decided to pursue Lucy’s surgery overseas.
Fundraising And Plans For Surgery Abroad
Once we were made aware of the benefits of this innovative surgery we were convinced this was right for Lucy and we set about fundraising. We set up the Gofundme and a Facebook pages and the response was staggering. I think we had raised over £10,000 in just over a week!! This was all down to the generosity of friends, family and complete strangers who donated money, time and organised events on our behalf.
Initially we had made plans to head to USA as this is where the operation was pioneered but we then found a forward thinking surgeon in Germany. We travelled there for a consultation and loved both him and the hospital and knew straight away we could entrust him with Lucy’s care. For a parent it is the scariest thought taking your child outside of the security of NHS for an operation and the stress of this decision was at times intolerable. However, we had to place our trust in someone at some point and this absolutely felt like the right decision.
Successful Surgery
5th December 2017....a date etched on our memories. That was when we were finally ready for it to go ahead despite several setbacks. After 8 hours in theatre we heard the news that it had been a success and that her curves had been significantly reduced.
Despite having 2 chest drains in the physios had her on her feet the very next day. She spent 6 days in ITU to allow her lungs to recover as both had to be deflated to allow access to her spine. After a few days on the ward we returned home on day 10. This was testament to the speedier recovery of this operation. Lucy went on to recover well over the next few months and it was amazing to see her move and bend in all directions and she was soon back to dancing.
So Cruel
Regular x-rays over the next few months confirmed nothing had moved and we all kept our fingers crossed. However, in December 2018 we were devastated when we told that the implant had snapped. Over the next year or so her curves slowly started to shift back. At the time of surgery in 2017 tether breakage was not widely regarded as a complication but surgeons now know from data that this can happen. Even if it does break most will not require any further operations as the spine remains stable in its new position. In Lucy’s case, however, as her curves had started to shift back and her back pain became much worse, we were faced with the prospect of her having to go through it all again. We couldn’t believe how unlucky she had been, especially after everything she had overcome to get there in the first place.
Hopes For A Second Operation
So, after much thought and discussion Lucy is going back to Germany for another surgery. This is not a decision we have taken lightly but she has come too far to give up now and her surgeon is very hopeful of a good result. A scan in London last year also showed the curves are still flexible which is key to the success of tethering. Whilst the first operation was attempting to reduce 2 large curves of 60+ degrees, they are now around 40 degrees so this time it should be easier to achieve a good correction. We have also been watching and waiting as we knew a stronger tether was in the pipeline and this is now being used in Germany and they use a double row in her lumbar spine to minimise chances of breakage. All in all, we feel that now is the right time to act.
Reaching Out For Help And No Regrets
Despite the setback we have no regrets choosing this path. The operation stopped two large curves progressing any further and she still has a fully functional spine. The thought of nearly her entire spine being fused in the early days was a chilling one and it was great to see her moving and bending as normal after her operation. As early adopters of this surgery, and as part of an ever expanding UK support group for parents we have no doubt that our experience has helped to pave the way for many dozens of families who have travelled overseas and had a successful outcome. Lucy has simply been unlucky.
So we find ourselves reaching out for help once again to help our beautiful daughter lead the pain and worry free life she deserves. We know Covid has been tough for many people financially but we would be eternally grateful if you could find it in your heart to make a donation, however small. If you are not in a position to donate we would still love your support by sharing our story. We need to raise another £18,000 to make this happen. We have kept this original Gofundme page as we strongly value the people who donated first time round. We have increased our total required to £77,000 to reflect the extra £18,000 we need.
Final Thoughts
Thank you for taking the time to read our story and I truly hope you never find yourself in the position we have been in. The stress of it all has been unbearable at times. On a positive note, it has been fantastic to see Lucy grow and blossom into a lovely young lady despite her condition and from the bottom of our hearts we thank you all for the support, encouragement and donations we have received to date. We will continue to post updates here but if you want to follow her story in more detail here is the link below to her Facebook page.
https://www.facebook.com/lucysurgerygermany
Mark & Lisa Huddleston X
Diagnosis of Scoliosis
When she was a young teenager our daughter Lucy was diagnosed with scoliosis. This cruel disease leads to the spine twisting and curving and causes pain and deformity. Unfortunately, she had 2 large curves and her spine became an “S” shape. As she grew older these curves increased in size and at one point were near 70 degrees. This condition was having a massive impact on her life leading to back pain and confidence issues. At the time she was also a very keen dancer. We felt sick at the thought that she needed surgery but with every month that passed her curves were getting bigger and we knew we had to act.
Spinal Fusion in UK
The only option in the UK to correct this is a spinal fusion. This operation involves screws, metal rods and a bone graft which would straighten her spine but fuse it all together creating one solid structure. Whilst a spinal fusion is still a very good option for some people, because of the length and size of Lucy’s two curves this would have meant the majority of her spine would need to be operated on. This would have resulted in a very stiff back and would severely limit her movement, how she bends forward etc.
A New Hope
We hoped there was another option and after online research we found out about a new pioneering operation that used a flexible plastic tether instead of metal rods.
This meant her curves would be reduced but she would keep a “functioning” spine keeping all of her flexibility and mobility. As her joints were untouched this meant that no bridges would be burnt unlike a fusion which unfortunately cannot be undone. It is also minimally invasive as no major muscles have to be cut through making recovery far quicker than a traditional fusion. The procedure was initially promised to her on NHS In London and we had a date for surgery in October 2016. We were elated with this and felt so relieved for her. However, 6 weeks before her operation we heard the devastating news that the funding had been withdrawn and her surgery was cancelled. The time following this was extremely stressful for the whole family, especially Lucy. She became very withdrawn and we felt terrible as we had built her hopes up so much. We hoped and prayed that it would be re-instated in the UK but it didn’t and after much thought, research and careful consideration we decided to pursue Lucy’s surgery overseas.
Fundraising And Plans For Surgery Abroad
Once we were made aware of the benefits of this innovative surgery we were convinced this was right for Lucy and we set about fundraising. We set up the Gofundme and a Facebook pages and the response was staggering. I think we had raised over £10,000 in just over a week!! This was all down to the generosity of friends, family and complete strangers who donated money, time and organised events on our behalf.
Initially we had made plans to head to USA as this is where the operation was pioneered but we then found a forward thinking surgeon in Germany. We travelled there for a consultation and loved both him and the hospital and knew straight away we could entrust him with Lucy’s care. For a parent it is the scariest thought taking your child outside of the security of NHS for an operation and the stress of this decision was at times intolerable. However, we had to place our trust in someone at some point and this absolutely felt like the right decision.
Successful Surgery
5th December 2017....a date etched on our memories. That was when we were finally ready for it to go ahead despite several setbacks. After 8 hours in theatre we heard the news that it had been a success and that her curves had been significantly reduced.
Despite having 2 chest drains in the physios had her on her feet the very next day. She spent 6 days in ITU to allow her lungs to recover as both had to be deflated to allow access to her spine. After a few days on the ward we returned home on day 10. This was testament to the speedier recovery of this operation. Lucy went on to recover well over the next few months and it was amazing to see her move and bend in all directions and she was soon back to dancing.
So Cruel
Regular x-rays over the next few months confirmed nothing had moved and we all kept our fingers crossed. However, in December 2018 we were devastated when we told that the implant had snapped. Over the next year or so her curves slowly started to shift back. At the time of surgery in 2017 tether breakage was not widely regarded as a complication but surgeons now know from data that this can happen. Even if it does break most will not require any further operations as the spine remains stable in its new position. In Lucy’s case, however, as her curves had started to shift back and her back pain became much worse, we were faced with the prospect of her having to go through it all again. We couldn’t believe how unlucky she had been, especially after everything she had overcome to get there in the first place.
Hopes For A Second Operation
So, after much thought and discussion Lucy is going back to Germany for another surgery. This is not a decision we have taken lightly but she has come too far to give up now and her surgeon is very hopeful of a good result. A scan in London last year also showed the curves are still flexible which is key to the success of tethering. Whilst the first operation was attempting to reduce 2 large curves of 60+ degrees, they are now around 40 degrees so this time it should be easier to achieve a good correction. We have also been watching and waiting as we knew a stronger tether was in the pipeline and this is now being used in Germany and they use a double row in her lumbar spine to minimise chances of breakage. All in all, we feel that now is the right time to act.
Reaching Out For Help And No Regrets
Despite the setback we have no regrets choosing this path. The operation stopped two large curves progressing any further and she still has a fully functional spine. The thought of nearly her entire spine being fused in the early days was a chilling one and it was great to see her moving and bending as normal after her operation. As early adopters of this surgery, and as part of an ever expanding UK support group for parents we have no doubt that our experience has helped to pave the way for many dozens of families who have travelled overseas and had a successful outcome. Lucy has simply been unlucky.
So we find ourselves reaching out for help once again to help our beautiful daughter lead the pain and worry free life she deserves. We know Covid has been tough for many people financially but we would be eternally grateful if you could find it in your heart to make a donation, however small. If you are not in a position to donate we would still love your support by sharing our story. We need to raise another £18,000 to make this happen. We have kept this original Gofundme page as we strongly value the people who donated first time round. We have increased our total required to £77,000 to reflect the extra £18,000 we need.
Final Thoughts
Thank you for taking the time to read our story and I truly hope you never find yourself in the position we have been in. The stress of it all has been unbearable at times. On a positive note, it has been fantastic to see Lucy grow and blossom into a lovely young lady despite her condition and from the bottom of our hearts we thank you all for the support, encouragement and donations we have received to date. We will continue to post updates here but if you want to follow her story in more detail here is the link below to her Facebook page.
https://www.facebook.com/lucysurgerygermany
Mark & Lisa Huddleston X
Organizer
Mark Huddleston
Organizer
England
