Spinal Cord Tumour Forum

The Spinal Cord Tumour Forum

Benign Spinal Cord Tumour Support & Information

Your Stories

Clive's story

Spinal cord tumours can occur in men as well. I had a C1-C5 ependymoma removed in 1995. 

Since around 1991 I had been experiencing bad neck pain which increasingly failed to respond to analgesics. Unfortunately, this was misdiagnosed as a "trapped nerve". But after a few years of non-responsiveness to traction, electro-therapy, massages and even stronger analgesics, I had growing difficulty using my fingers and my hands were starting to look odd due to muscle wasting. In 1995 I switched from seeing an orthopaedic to a neuro-surgeon, who after a thorough physical examination sent me for a MRI scan. This was when I was told I had a tumour inside my spinal cord. 

I have to say I was so sceptical that I saw another neurosurgeon for confirmation. He explained that most likely the tumour had been slowly growing for some years and while it was unlikely to be malignant it would, if I left it untreated, eventually paralyze me and cause an early death. (I was 49 at the time). 

The options presented were A) surgical removal of a small section of the tumour for a biopsy followed by a long course of radiation therapy or B) attempt a complete surgical removal. It was explained that because of the size and position of the tumour that complete removal was not guaranteed and had risks. 

I was lucky at that time to find a surgeon with vast experience of ependymomas. He and his team removed the complete tumour. I did not know this for a few days as I was in intensive care and not very with it. Although technically a quadriplegic, my toes wriggled and the surgeon assured me that I would regain most of my functions. At this stage it really helps to have a positive medical team and supportive family and friends. At times I wanted to give up. I had severe nerve sensitivity such that for days I would scream when touched. Bowels and bladder did not function at all well. Even my breathing was irregular. 

Gradually, with fantastic support and skilled, expert therapy I regained the use of my arms and legs. I learnt to walk again albeit a little asymmetrically. The nerve pain slowly came under control with medicines. 

I still walk in a lopsided sort of fashion. I cannot run. I weaned myself off the medicines and live with the residual nerve pain and hypersensitivity. I have embarrassingly clumsy hands and poor proprioception I have recurrent UTI's due to ongoing poor bladder control. My neck does not turn easily. I get tired more easily. I am irritable and grumpy at times but my wife insists that is no different from before.