A BRAVE Ebbw Vale nurse whose life was turned upside down after she was diagnosed with a rare debilitating condition has spoken of the need to raise awareness of the illness.

Vicky Main was diagnosed with Cauda Equina Syndrome (CES) in May 2019 – a rare and severe type of spinal stenosis where all the nerves in the lower back suddenly become compressed.

It usually causes crippling sciatica, leg weakness, severe back pain, and sexual dysfunction.

While there is no direct cure for the syndrome, the earlier you get emergency hospital treatment, the higher chance of a full recovery through physiotherapy after an operation.

Recounting the day she received her diagnosis, Mrs Main – who still suffers severe symptoms including no feeling in her left lower leg, and requires a wheelchair – said: “It was really scary. I knew something wasn’t right but when they told me I needed emergency surgery and they didn’t know how I would respond to the operation, it was awful.”

When she came out of the operation needed to relieve the pressure on her spine, she recalled the period as “some of the hardest days of my life”.

“I wasn’t right at all," she said. "I still had most the symptoms and couldn’t walk very far on crutches, I needed a wheelchair. It was as though I was grieving for my old life,” said the mother of two girls aged 10 and 14.

The family of four had always been extremely active, regularly going to theme parks and for days out.


“I couldn’t stop the feeling of guilt and grief," she said. "You never imagine life being like this until it happens to you.

“I became embarrassed going to the shops because people would look at me when I parked in a disabled bay to make sure I was actually disabled. It was horrible.

“We went to Drayton Manor with the children and I remember feeling an immense cycle of grief for my old life – remembering how it used to be. But you can’t keep living like that.”

Determined to help people feel less guilt about having the condition, Mrs Main has become the Champion for Wales for the Cauda Equina Syndrome Association, and regularly supports others with the illness.

“I felt lonely until I found the association last summer," she said. "Now I know I’m not alone thanks to them, and I wanted to join them and help others make that step.”

Mrs Main is working hard with the association to help people spot the “red flags” of CES to prevent the illness worsening for those who get a diagnosis.

“Lockdown in particular has made me realise how important the association is,” she added. “There are so many vulnerable people out there who are isolated. The work the association does is so important. It gives people a chance to find a new life and a different chapter while living with the illness.”

On living with CES almost 16 months on, she said: “Life is hard living with a life-changing disability at 34. It’s really difficult.

“But I want people to know there is support out there. We need to spread awareness of CES so people don’t suffer alone.”

For more information on CES, or for help and support, visit https://www.ihavecaudaequina.com/.