Meet my daughter, Alis. She is a bright and beautiful 15-year-old who loves to perform both through school and her theatre group - Theatretrain - and is working hard for her GCSE exams this year. She also has a deformed spine. She wasn't born this way.
Alis has something called idiopathic scoliosis - an abnormal curvature of the spine - that can develop around the time of puberty. It can create enormous health problems if left untreated because the twisted spine can start to crush internal organs and can lead to breathing issues. It can also be incredibly painful and emotionally scarring. Like any parent, I don't want this for my daughter. I'd be incredibly grateful if you could take the time to please read her story.
We were on holiday in the summer of 2016 when I noticed that Alis's crop top was hanging strangely; there was a significant gap between the top and her shorts on one side but, on the other, they were touching. I looked more closely at her back and could see that something was wrong - her spine wasn't straight.
I rushed her to our doctor who immediately referred her to the local orthopaedic department in Herts and Essex Hospital in Bishops Stortford. The doctor there confirmed scoliosis and referred her to the Royal National Orthopoedic Hospital in Stanmore. It was all wonderfully efficient but this is the NHS and the process took nearly a year. We finally saw a registrar in Stanmore in April 2017. In the meantime, Alis had stopped growing - and that is where her story really begins...
Alis's curve measured 50 degrees. This is a significant curve - most surgeons recommend surgery for curves of 50 degrees and over. She was offered fusion. This is the only treatment currently funded by the NHS and involves removal of the cartilage between affected vertebrae, and insertion of pieces of bone (from a cadavar, the patient's thigh or a synthetic equivalent) in their place. In Alis's case, this would mean 12 cartilages would need to be removed - a large portion of her back. In surgery, the spine would then be forcibly straightened and - in order for the spine to stay straight - titanium rods attached to both sides of the spine by screws drilled into her bones. These would hold the spine rigid until it fused into one long bone. At this point, the 'hardware' would no longer be needed but it is rarely removed. Once fused, the spine cannot bend or twist any more. It is irreversible.
I'm sure you must agree that this is a huge decision. The procedure is non-reversible, often leaves the patient with increased pain and (this was the bit that got me) nearly always leads to further surgery due to increased pressure on the unfused sections of the spine as they have to work harder to compensate for the immobile section. This can lead to arthritis and pain. It is not an ideal surgery.
I needed to investigate all options for Alis. She isn't in much pain yet but this surgery might well lead to pain. Without surgery though, the condition is likely to progress and then she won't have a choice. Apparently, the recovery is better when the patient is young - there is no easy answer. Do I say yes to surgery that might lead to pain just so she can recover more quickly or wait and possibly give her a harder time in the future? My mind was whirring and I have spent months researching the best option for her.
We went back to Stanmore after six months (in November) and her curve has remained stable. We were told that surgery will be needed but right now it's 'our choice'. That didn't help.
I had thought that Alis had missed the opportunity for any form of surgery other than fusion because she had stopped growing. With the news that her curve had not progressed though I felt we had time to explore her options more carefully and SHE DOES HAVE AN ALTERNATIVE!!!
VBT or tethering is a much newer technique. It is used widely across the world to treat scoliosis in growing spines. It was offered for a short time on the NHS but funding has now stopped - not because of a problem with the procedure but because the NHS, understandably, needs to research it. Unfortunately, funding limitations mean that there are no plans to look into it yet so everything is on hold. There are surgeons who are in favour of the procedure but they need to wait for the funding to be approved and are unable to currently pursue all the advances that are being made worldwide. It must be frustrating for them and I understand that procedures need to be followed but it doesn't help those children like Alis who need help quickly.
Instead of rigid metal bars, VBT uses a flexible cord and is what Simon Cowell paid for the young dancer on Britains Got Talent to get last year. There aren't so many long term studies, of course, because it's newer, but there is no reason to believe that it will lead to the same issues above and below the tethering that is found with fusion. There is also much, much better flexibility after this operation. Until recently, this was used on physically immature spines. Corrected a little in surgery, the idea was that the growing spine would be forced to be straighter as it grew. This was of course no good for Alis BUT, just recently, medicine has moved on. We are so lucky.
VBT is now being performed on mature spines that still have enough flexibilty to be straightened successfully on the operating table. This is a tremendous step forward for us - Alis might be able to go into adulthood pain free, flexible and without the worry of future problems.
On 22nd December 2017, Alis and I went to Germany to meet Dr Trobisch. Working in the USA until recently, he is a world-renowned surgeon and at the forefront of the medical advancement of scoliosis treatment. We told him her story and he examined her. He was very thorough - sent her for bending X-rays to see how much her spine could be straightened during an operation (from 55" to 34"), measured how twisted she has become (12" on the Adams test - a big twist) and what other complications might be present. The bad news is that, on top of her large twist - that has already created a significant 'hump' from her ribs twisting and sticking out, she has 'severe trunk shift to the left'. This means her whole body is out of alignment. She is a complicated case.
HER TRUNK SHIFT HAS TAKEN AWAY OUR CHOICE. SHE MUST HAVE SURGERY.
I have tried to be very rational and considered as I have looked into Alis's choices. As far as I can tell these are the pros and cons:
6-8 hour surgery
Up to a year to fuse fully
Up to two blood transfusions during surgery
Limited movement for life
Inreased wear and tear above and below the fusion
2-4 hour surgery
Back to school within 2-3 weeks
No blood transfusion
Flexibliity after the operation
All options for different operations still available
No wear and tear
Of course, this is new so there is no long term data available but Dr Trobisch said that we have every reason to be positive and that the science is sound.
So... there's no discussion really, is there? Why wouldn't I just go ahead and book her in for VBT? Well, like so many things in life, it's all down to money. Fusion is free on the NHS but VBT will cost us €35,000 plus travel and accommodation etc. I simply don't have that money.
I think it would be fair to say that
I am ordinarily a self-sufficient person who doesn't normally ask for support but we have been through a number of financial problems this year and I simply can't do this alone. Any contribution you could make - big or small - would be hugely well-received as we start our fund raising campaign. I'm a mum. More than anything, I'd like my daughter to have a long, flexible, pain free life - and with this surgery she can hope for that too.
Because her spine is starting to stiffen up, we need to move fast. We are planning surgery for August 2018. Please help.
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