Spinal Cord Tumour Forum

The Spinal Cord Tumour Forum

Benign Spinal Cord Tumour Support & Information

Your Stories

Carolyn’s Story

I was first diagnosed in 2008 after having back pain since July 2007 following slipping on a wet floor. I had difficulty abducting my right leg but once my primary symptoms settled down I still had this awful back ache that didn't seem to respond to anything.

As a nurse I was used to back ache but after two lots of physio I asked my GP if he would organise a MRI scan before I opted for local spinal injections through the pain clinic.

The result of that was a lumber spinal tumour at L1/ L2 which they thought was a schwannoma.

This came as a huge shock and for some time I felt like a rabbit in the head lights. We were on holiday at the time and had to wait a week or two before we saw the GP and organised a consultation with a Neuro Surgeon.

My husband was a Intensive Care consultant at the time and spoke to a colleague who recommended a surgeon who specialised in complex spinal surgery.

When we eventually met him after what felt like agonisingly, sleepless months he wasn't unduly concerned about it. He felt it was a slow growing lesion which I had probably had for many years and may well not need any treatment at all. He suggested that we leave it alone and organise yearly scans and suggested that I see a sport consultant regarding my back pain which he felt was mostly degenerative but if at anytime I wanted it removed he would happily do so but at that time felt it was more want than need. I was full aware that going in and operating carried a risk of enormous complications and may well leave me with more symptoms than i had.

I remember leaving the office not knowing exactly how I felt. Over the months before my consultation I had geared myself for surgery and all the implications that involved. My husband on the other hand was so relieved.

Over the course of the following five years I had numerous consultations with my surgeon as my symptoms changed from back ache to pains down my right leg and radiating from my spine to my hip. I then started to get weakness in my right thigh and then by the beginning of March 2013 bladder problems and parathesia that radiated from my feet to my waist.

By the beginning of October I couldn't carry on as I was and we contacted a neurologist at a local hospital who suggested we get in touch with my surgeon, which we did. After having problems organising an urgent scan my consultant admitted me on the Wednesday and after a MDT meeting on the Friday felt that it had changed and told me that if left would leave me paralysed from the waist down and doubly incontinent . So I signed the consent form there and then and after being discharged on conditioning steroids,returned the  following week and had my surgery.

My tumour turned out to be a myxo papillary ependymoma  and luckily came out en block.

I have had a full spine and brain scan and so far so good!

My prognosis is very good and I try not to think too much about the possibility of it recurring but I am mindful that it can and because of that will continue to have yearly scans.

Even though it has left me with some troublesome symptoms that have been life changing I feel incredibly lucky. I can walk the dog, go on shopping trips with my children, meet girlfriends for lunch of coffees and make and sell my pottery which has become an important part of my life as the possibility of returning to nursing is not possible anytime soon.

The important thing to me is not to be defined by my illness and what I can no longer do but by what I can and will continue to strive to do.