Grateful Leeds patient with rare genetic disease is now in less pain after being offered a 'surgical first'

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A Leeds man with a rare genetic disease has thanked surgeons for “pushing the boundaries” after he was offered a surgical first to help him live a life with less pain and better mobility.

Oliver Moody, 26, was diagnosed with mucopolysaccharidosis (MPS) as a child which means he is missing a vital enzyme which breaks down harmful chemicals in most parts of his body, causing damage.

People with MPS usually have severe problems with their bones and most stop growing before their teens.

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Over the years, Oliver has had a number of different operations on his spine, eyes, limbs and hips.

Consultant neurosurgeon Ankur Saxena with Leeds patient Oliver Moody, 26.Consultant neurosurgeon Ankur Saxena with Leeds patient Oliver Moody, 26.
Consultant neurosurgeon Ankur Saxena with Leeds patient Oliver Moody, 26.

Due to his condition, one of the bones in his spine had not formed properly, causing the discs to bulge and leading to increasing levels of pain and mobility issues.

Oliver has now become the first patient in the country - possibly the world - with MPS to receive keyhole surgery to correct his spinal problem after doctors at Salford Royal Hospital carried out the “incredibly challenging” operation.

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The surgery was carried out under local anaesthetic and Oliver was able to be discharged home two hours after the procedure.

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An image from theatre during the operation.An image from theatre during the operation.
An image from theatre during the operation.

He said: “I was nervous but this was more about what the operation meant to me, rather than the operation itself.

“It was ‘make or break’ for me because I knew I couldn’t go on with the way things were.

“I had painful cramping in my legs every couple of minutes pretty much 24/7.

“If we did nothing, it was only going to get worse. I probably would’ve ended up paralysed. It was a no-brainer for me, I needed to have the operation.”

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He said: “I was awake the whole time, talking and listening to music,” adding: “I knew it was a big operation and certainly realised that afterwards with the amount of people who were interested in how it had gone.”

Since the operation, Oliver’s standing, walking and balance has improved, along with his pain levels.

“It’s never going to be perfect and I won’t be running a marathon any time soon but I am so glad I had the operation and with physiotherapy over a longer period of time, I’m hoping to see much more improvement,” he said.

Consultant neurosurgeon Ankur Saxena, who carried out the operation after months of planning, said the success had left him with a “big smile” on his face.

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“If we had not done keyhole surgery, it would have meant surgery with a general anaesthetic. For Oliver, this would’ve meant a whole day in surgery, time spent in intensive care, followed by maybe days and weeks in hospital with a very high risk of other potential complications.”

Oliver faces further operations down the line but said he hopes to be as “self-sufficient” as possible in the future, adding: “I want to be able to drive, and so I hope to be able to start doing that in the next six months.”

His dad Paul, a former Chairman of the MPS Society, said: “He’s had so many operations since he was a little boy. He is so brave and hospitals and surgery don’t faze him any more. We are so grateful to Mr Saxena and his colleagues and we really excited for the opportunities this might open up for other MPS patients.”

Oliver was referred to Salford Royal, part of the Northern Care Alliance NHS Foundation Trust, which - via the Greater Manchester Centre for Clinical Neurosciences - offers world-class care for people with brain and spine disorder and injuries from across the UK.

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