A Salford Royal patient with a rare genetic disease has thanked surgeons for “pushing the boundaries” and offering him a surgical first.
Oliver Moody, 26, from Leeds, was diagnosed with Mucopolysaccharidosis (MPS) as a child. The condition 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.
Oliver is the first patient in the country - possibly the world - with MPS to receive key-hole surgery to correct his spinal problem. The surgery was performed using local anaesthetic, meaning Oliver was numbed at the site of his operation and was awake during the surgery. He was discharged from hospital only a couple of hours after the surgery.
Over the years, Oliver has had a number of different operations to help him with all the problems created by his condition, including cervical spine decompression and surgery on his eyes, limbs and hips.
Due to his condition, one of the bones in his spine had not formed properly. This caused one of his spinal discs to bulge and whilst Oliver has been able to live with this for some time, in 2017 he started experiencing pain in his legs and the pressure of the discs on his spinal nerves was starting to create mobility problems.
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. Consultant Neurosurgeon Ankur Saxena, who specialises in spinal disorders, could tell from scans that the impact on Oliver’s spine was worsening and the nerves required decompressing.
Surgery was the only option for doing this but operating on MPS patients is incredibly challenging. Many MPS patients have poor lung capacity and their trachea (windpipe) is not straight. This means preparing an MPS patient for general anaesthetic, where they are put to sleep and their breathing assisted with a breathing tube through their mouth and throat, is incredibly risky.
Mr Saxena, who specialises in offering the latest surgical and non-surgical treatment for spinal problems, believed undertaking the surgery using the key-hole technique and using local anaesthetic would be the best solution for Oliver – even though this had never been done before. Key-hole surgery is minimally invasive surgery and sees surgeons using an instrument called an endoscope. This is a small tube with a light source and a camera, which relays images of the inside of the body on to a screen to help guide the surgeon’s movements.
He spent months of meticulous planning with surgical and anaesthesia colleagues – making arrangements for the preferred keyhole surgery under local anaesthetic but also planning the alternative of surgery under general anaesthetic, if keyhole couldn’t be done.
Oliver’s surgery took place in late October.
Oliver 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.”
The surgery was a success and Oliver was discharged home two hours after the procedure.
He explained: “I was awake the whole time, talking and listening to music. There were times when I felt a bit of discomfort or a sensation but the levels of pain killing medication were then increased and it passed. When the surgery was over, lots of staff members came to see me and said I had done really well. 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.”
Mr Saxena admitted that the success of the operation had left him with a “big smile” on his face. He explained: “If we had not done key-hole surgery, it would have meant surgery under 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.”
Since the operation, Oliver’s standing, walking and balance has improved and he is in far less pain. He said: “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. I know I face further operations in the future but what I want is to be as self-sufficient as possible. 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.”