Spinal Cord Tumour Forum

The Spinal Cord Tumour Forum

Benign Spinal Cord Tumour Support & Information

Your Stories

Sean's Story

I had started experiencing lower back pain and extreme pain in my right leg for around two years from 2008. I went to the GP and was told that I was getting old (in my mid forties!). I returned to my GP a few months later and was sent for an X-ray which revealed that I had no problems with my bones or joints.

The specialist referred me for an MRI in July 2010 which revealed that I had a tumour in the L1 L2 area. I later found it to be called a Schwanoma, a benign nerve sheath tumour. My symptoms by October 2010 were extreme pain in my right leg up to twice a week which got worse on each occurrence. (Just when you though it couldn't get any worse than it was!) The least amount of pain is a dull toothache kind of feeling running the length of my right leg. It is always on the right side. Occasionally I will got a stabbing needle pain in my toes but this is rare. I also noticed a kind of stiffness all around my hips/upper thighs. This was noticeable when sitting in a chair for any length of time. It was difficult to get out of a chair and also painful to climb stairs or walk up a steep hill. I was told complete removal would be possible. They said that it was 99% likely to be benign. Surgery was planned for mid October. The procedures carried out were L1 laminectomy/partial removal of T12 and L2 laminae and removal of a L1/2 oval lesion possibly a meningioma. The surgeon described the tumour as being swan necked and was growing around nerves, some of which they had to cut. I was told I may be left with loss of some function. I was laid on my back for three days after surgery and made my break for freedom in the early hours of day 4. As reported by others this was the worst period through boredom. My back felt as if it was being pulled apart. The pain was controlled and was not an issue. The following day I was discharged into the back of a taxi.

After surgery I had a scar around 7 inches in my back with dissoluble stitches which healed really well. There was initially some swelling. The horrible pain I had before disappeared and I could now walk easily but not bend over. I had a slight numbness in my left hand which improved on a daily basis. I drove the car comfortably and did not take any medication for pain after 3 days. With regards to my anxiousness/stress following the diagnosis and pre-op period I know think there was no need for me to feel that way. Everyone at the local hospital was fantastic, especially the nurses who were constantly on the go, working so hard. In comparison to some I have been lucky. I returned to work in February 2011 and suffered from some fatigue and felt a little uncomfortable in the lower back but not really something I would describe as pain. I started to resume cycling up to distance of 55 miles on my bike regularly and am did 70 miles around the Isle of Wight on April 1st 2011. I also played squash a few times but paid the consequence!

My journey has been an anxious one and dealt me some serious pain before my op. In my first writing on the forum in the summer of 2010 I had a fear of the unknown. My tumour was benign and has been fully removed. I believe that my recovery was relatively problem free because I was fit through cycling prior to my diagnosis. Another user of this forum who replied to me on the message board seemed to have a similar experience of cycling. He also makes comparisons to his previous experience of pain. In February 2012 I was asked to resign from my job as a teacher as I was suffering from severe fatigue and some nerve pain. I seem to spend a large proportion of my life asleep. I visited Occupational Health where I was told that I just needed my brain remodelling and to realise I wasn't tired or words to that effect!! I returned to work 2.5 days a week and that became increasingly more difficult resulting in another prolonged absence from work. As I said, from my experience the only people who seem to understand are the Consultant and other sufferers of the condition.

At the beginning of 2013 I still experience lots of problems with nerve pain and fatigue. I have had returning pains in my right leg again which throbs halfway through a working day. My left leg goes to sleep if I sit in a chair for too long and everything seems to seize up around my hips. I have also been experiencing another severe pain which I can only describe as being higher up somewhere between my inner chest and spine. Stabbing pains in arms are also quite frequent and my arms go to sleep when lying on my back. Numerous scans since surgery have not revealed the cause of this but I suspect it is lasting damage that I will just have to live with. At this time I cannot physically manage the routine of a teacher, as doing so with my current symptoms impacts on my wellbeing greatly. Or maybe I am just “getting old”!