The Spinal Cord Tumour Forum

Benign Spinal Cord Tumour Support & Information

Spinal cord tumours change your life in some way forever. In my case I would say that my outlook on life has changed forever but physically I came through the experience relatively unscathed and in that sense I can offer some hope to those that are facing the dilemma of whether to have the operation to remove the tumour.

I was plagued with neck problems for several years and normal treatments like anti-inflammatory medication, acupuncture, traction, neck brace etc had no real effect. By the time the tingling sensations, circulatory problems, weaknesses in arms, bladder and bowel problems had slowly affected every function I could not sleep for more than 1-2hours as I couldn't put pressure on the spine. I could not travel even short journeys by car and walking short distances jarred the spine and left me exhausted. I was in a wheelchair with the right hand side of my body wasting rapidly when the tumour, a 'schwannoma' was found through an MRI scan - like a maggot strangling the inside of the spinal cord from 3-5 vertebrae.

In 1989 I had an operation to remove a spinal cord tumour (ependymoma, C6-T1). I was told it had probably been lying dormant for years and had suddenly become active. I developed a severe pain in my neck and began to lose the use of my fingers. Simple things like writing and doing-up buttons became impossible and I had spasms in my fingers, which often became rigid.

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.