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Saturday 26 August 2017

Mum who took daughter to Germany for life-changing spinal surgery calls for treatment to be available on NHS









A Chessington mum who took her 15-year-old daughter to Germany for "life-changing" treatment is calling for the same surgery to be made available on the NHS.
Daniela Cavalli, of Lofthouse Place, noticed her daughter Stefania’s back looked abnormal in November 2016, and after a visit to the doctor discovered she had severe scoliosis and needed surgery.
She said: “We’d never even heard of scoliosis. It was quite a shock; I thought it would just need some exercises or a brace.
“She had been getting daily back aches, but we put it down to posture and being flat-footed. It had started to become really bad over the previous few months.

“Stef would go shopping with her friends, but she could only stay for an hour. She couldn’t even get on a bus; she would call me and ask for a lift.”
Until recently, St George’s Hospital in Tooting offered certain patients the option of vertebral body tethering (VBT), a relatively new procedure.
It involves screws being fixed along a cord in the patient’s back, and the operation is reversible in the case that it doesn’t work.
Mrs Cavalli said: “We had the option of fusion surgery, but that would have given her mobility issues. VBT is non-invasive – still horrendous, but much better.”
The family searched the internet for places to have the surgery, but could not afford the £180,000 it would have taken to have the double VBT operation to correct Stefania’s ‘S-curve’ in the US.
In July, Simon Cowell paid for Britain’s Got Talent finalist Julia Carlile, 15, to have the same operation to avoid fusion surgery that would have left her unable to dance again.
Eventually Stefania’s family found Dr Trobisch to operate on Stefania at Eifelklinik, Simmerath, Germany, and she went to have the procedure on July 12.
She is now making a quick recovery, and will be returning to Tolworth Girls School in September.
Mrs Cavalli said: “She could go back to full sports now, only four weeks on. She could be doing backflips after eight weeks. With fusion surgery, which would take a whole year to recover from, she would not be able to do half the things non-fusion surgery allows.
“We know we’ve taken a risk. The maturity of her spine was an issue; it works best on younger children whose spines are still growing, but there are other kids around the world who have had this operation and are absolutely fine.
“The biggest issue now is that it’s uncomfortable for her to sit on a chair for too long as a result of the surgery. Other than that, she’s doing really well.
“The surgery has been life-changing. Without an operation, she would have probably become wheelchair-bound.”
Now she wants to build momentum for VBT trials to resume in the UK, to allow other children the chance for the procedure their families might not be able to afford to take them abroad for.
“I want VBT to be available on the NHS, and I’m hoping more awareness can really move it forward.
“The NHS has been really supportive. The doctor at St George's said it was our decision and he has said he will do all our follow-up consultations. That has been a huge relief. But I think the surgery should be available here.”
A statement from the British Scoliosis Society said that although there have been positive early results for VBT, the technique needs to be introduced in a ‘controlled and responsible way’, and results should be monitored ‘for many years before any decision regarding wider adoption’.



Source : Surrey Comet , 11th August 2017 

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