Spinal Cord Tumour Forum

The Spinal Cord Tumour Forum

Benign Spinal Cord Tumour Support & Information

Your Stories

Alison's story

I was 40 in 2003 and had been suffering from a 'crunchy' painful neck and some loss of sensation in my finger tips on my left hand. I had been pushing to get some help via my doctors and eventually they sent me to an orthopaedic consultant, with the thought that maybe I had a trapped nerve from cervical spondylosis.

Cutting the story short, I saw him in August 03 and waited seven months until March 04 to get an MRI. In May 04 I receive the devastating results that I had an intramedullary spinal cord tumour at C1-C3.

After a few devastating cancellations (having already been prepped for theatre) my first surgery was in July 04. This included a C1-C3 laminectomy, a biopsy and some debulking of the tumour. With the results confirming my tumour was an ependymoma, my surgeon decided to operate again to open up the cord and hopefully get the tumour out. This operation took place Nov 04 and also involved a C1-C5 fusion to support my neck, as the laminectomy and first surgery had caused a forward curvature of my neck, due to lack of support in the bones/muscles. I am left with 5-10% of tumour and continue to be monitored.

I am now three years on from surgeries. It is life changing, but knowing you are not alone helps. I often grieve the old me, but the only way is forward. It takes a while to accept what we go through, but then it's a case of accepting what we have and not what we don't have.