A young man has been left with back pain and mobility issues for the last three years. Cian Lewis-Hughes was an active rugby player with a promising future within the sport, however, his mobility has significantly decreased due to a spinal condition which has left him struggling to walk and “unable to do much” for himself.
The 23-year-old from the Rhondda claims he has had to fight for answers about his condition and had to pay privately to be preliminarily diagnosed with filum disease - a condition that affects the nervous system, the skull, and the spine. Symptoms can include headaches, nausea, vomiting, dysphagia, vertigo, memory deterioration, neck pain, upper back pain, lower back pain and more.
He said: “I started having issues three years ago before Covid hit. I was having issues with waking back then, but was a bit better than [I am] now. I had pains in my lower back and pulling [pain] down my spine from my head and neck down to my coccyx in my lower back.
“This year I went to University Hospital Wales for tethered cord syndrome and had a prone lumbar MRI which showed my conus was lying at L1, which is not a traditional tethered cord.” Cian claims he was told that the medical professionals couldn’t see an issue within the scans, which he said left him feeling “patronised” and ignored.
He added: "It had a massive impact on my mental health not knowing what was wrong with me and why it is hurting when I walk and try to do stuff. It’s progressed to the point now where I can’t do hardly anything by myself and I have to rest all the time, compared to the old me who was actively playing rugby and enjoying life.”
A spokesperson from Cardiff and Vale University Health Board said: "We are sorry that Mr Lewis-Hughes was unhappy with his consultation at Cardiff and Vale University Health Board. We cannot comment on individual cases, but we would urge Mr Lewis-Hughes to contact our Concerns Team who will be happy to speak with him directly."
It was suggested that Cian contact a specialist institute in Barcelona for help. Cian travelled to London with his grandad to get a full spine MRI, which he then sent to the institute in Barcelona to examine.
He said: “After three days they read it and I had an email saying that their medical team has viewed them and my case is compatible with filum disease, which is your filum terminale in your lower spine that acts like an anchor for your spinal cord. They have to do minimally invasive sectioning of the filum teriminale to stop the progression and to even reverse my issues, hopefully.
“They said that this is a preliminary diagnosis which means what they see based on his knowledge and experience on this matter and want to have a consultation at the centre the day before the surgery to do a physical examination on me and then operate the following day if I choose to go ahead with it."
"This operation would mean a chance of being able to walk properly again without having to use my arms to grab onto stuff, not be in pain any more and have a feeling in my legs that they're working properly,” said Cian.
To fund his operation, Cian has set up a GoFundMe page to raise £16,700 which will pay for the full surgery in Barcelona. He added: “Getting a diagnosis has been a huge relief on my head knowing there’s a cause to this. I’m just super glad I sent my imaging over to Barcelona and hopefully, with the people’s power and help they can support me through my GoFundMe, to get my operation underway.”
To help Cian fund his operation in Barcelona, you can donate here.
