My spinal cord tumour journey began in October 2005, aged 25. After about 2 years of problems with hip and backache and falling over because of weak legs, the doctors finally realised something serious may be wrong and I was referred to a neurologist. After numerous tests and an MRI scan, I was told that I had a spinal cord tumour and referred on to a neurosurgeon.
My spinal cord tumour was located at the bottom of my spinal cord and hanging out the base of it, apparently about the size of a sausage! It was using up all the space in that position and preventing the nerves getting through to my legs and feet, hence why I had been falling over. I was told that there was only an 80% chance the operation would be successful and even if it was, I would still be left with nerve problems in my legs and feet where the nerves had already been damaged. The 20% chance of risk included total paralysis from the waist down. To be explicit, as was explained to me, this would include no control over my bowel and bladder and no sexual function. I was also told that because the tumour would be hard to remove without causing further damage, they may have to leave some of it. I would then need radiotherapy which may affect my chances of having children. It all seemed really unfair.
My family and I cried and held each other and I wondered how I would cope with my 2 year old son if I was paralysed. Five days later, I was admitted to Frenchay hospital and had a 7 hour operation to remove the tumour. It was terrifying but successful. I came round from the operation able to wiggle my toes – a sign that I hadn’t been left paralysed and that no damage had been done. In fact, they had removed the whole tumour, so no radiotherapy was necessary.
It is now 3 years since the operation. The tumour turned out to be a myxopapillary ependymoma – between T12 and L2. The recovery process following neurosurgery is slow and difficult. The first 6 weeks are hard but things improve. Even the nerves appear to have repaired themselves and I have no weakness in my legs and feet, as expected. In brief, I am almost leading a normal life, except that I need to rest more than before.
Despite fearing that I would not be able to have another child because of the impact to my back, I went on to have a beautiful baby boy 10 months ago. Being pregnant following a SCT is very hard but achievable. My little baby boy, Samuel, is proof that life can continue after a spinal cord tumour!
Spinal cord tumours are extremely rare and when I asked why I got it, I was told it was just bad luck. But, I actually feel lucky rather than unlucky to have survived this experience so well physically and mentally. I now show off the scar on my back with pride! . Apart from a yearly MRI to check I’m tumour free, I have no reason to see my consultant more than anyone else.