From as early as she can remember, Melanie Ramsay couldn’t sit still. The 44-year-old says that aches and pains in her back meant that she would constantly rearrange her legs in a desperate attempt to get comfortable.
But, in her late 30s, the sports broadcasters says her symptoms began to get much worse.
Melanie started to experience severe and inescapable back pain. No matter whether she was sitting, standing or lying down, she says the pain was just as bad.
‘It felt like my bones were breaking,’ she says. ‘It was so painful that I couldn’t sleep for more than three hours at a time. It was taking over my life.’
At first, Melanie – a keen runner and hiker – put the pain down to overexercise.
When the problem did not abate, she sought help from her GP. However, when X-rays of Melanie’s back and hips showed nothing abnormal, she was sent to a see an osteopath – non-medics who help with pain.
Melanie was diagnosed with a tethered cord at 39–years–old after decade of seemingly unrelated symptoms.
The osteopath recommended a series of physiotherapy routines, stretches and exercises designed to help with mild joint issues.
However, these had the opposite effect for Melanie. The pain, which started in her lower back, began radiating down her legs.
‘While I was in physio, my legs were getting progressively more numb and I was losing the ability to walk. Then I lost all sensation around my pelvis and genitals,’ she says. ‘It was terrifying.’
Melanie, from Chicago, US, also started experiencing bladder issues such as finding it difficult to pass urine and overflow incontinence – also known as chronic urinary retention whereby someone is unable to fully empty their bladder, which causes frequent leaking.
Eventually, in March 2021, at the age of 39, Melanie’s GP agreed to send her for an MRI scan, in part to rule out the possibility of a spinal tumour.
However, the hospital specialists were surprised by the results of the scan.
The scan revealed an abnormality in Melanie’s spinal cord – the long bundle of nerves inside the spine that carries messages between the brain and the rest of the body.
The spinal cord is essential to movement, sensation and reflexes. But in Melanie’s case, the bottom of her spinal cord had fused with the surrounding tissue, meaning it could not move freely.
The problem, known as a tethered spinal cord syndrome, causes damage to the nerves and leads to a variety of symptoms including severe back pain and bladder problems.
Roughly 16,700 people are estimated to have a tethered spine in the UK, or one in every 4,000. However, experts say the problem is notoriously difficult to diagnose.
In March 2021, at the age of 39, Melanie’s GP agreed to send her for an MRI scan, in part to rule out the possibility of a spinal tumour
The spinal cord is the long bundle of nerves inside the spine that carries messages between the brain and the rest of the body
The surgery eased Melanie’s back pain – which she still has to manage with physiotherapy – but she still can’t live life to the full.
‘It has a spectrum of presentations – with no two patients presenting with the exact same symptoms – so it could be underreported,’ says Prof Adam Taylor, an anatomy expert at Lancaster University
‘Symptoms are often non-specific such as lower back pain, chronic fatigue muscle weakness or recurrent bladder infections which are all very common symptoms of lots of other things.
‘In more severe cases you would pick it up at a very young age, but if a patient has a milder version, it becomes more difficult. It might be there’s a lot more people who have it than we know about.’
Experts say it is still unclear what causes the condition. However, research shows that babies are more likely to be born with it if their mother is deficient in folic acid (found in leafy greens and wholegrain bread) or vitamin B12 (found in animal products such as meat and dairy) during pregnancy.
Melanie, who has since started her own support charity called the Tethered Cord Support Alliance group to help raise awareness for the condition, says her diagnosis changed her life as she finally had an answer to her pains.
In April 2021, Melanie underwent spinal surgery. The procedure involved cutting the band of abnormal tissue anchoring her spinal cord.
When performed at a young age, the operation can prevent back pain and neurological problems from progressing but when left until later in life, de-tethering doesn’t provide the same benefits.
The surgery eased Melanie’s back pain – which she still has to manage with physiotherapy – but she still can’t live life to the full.
‘If you grow up with a tethered cord, you’re left with a body that’s like a physical train wreck,’ she said. ‘Even now, I can never push my body past 80 per cent, without risking relapsing and my symptoms coming back.
‘But if there was better awareness of what tethered spine looks like – and this had been ruled out a lot earlier, a lot of the pain and nerve damage could have been avoided.’
Prof Taylor advises that anyone experiencing long-term pain that is not alleviated by common painkiller or anyone who finds that certain movement and exercises are worsening their symptoms, should speak to their GP about the possibility of a spinal MRI scan.
