Spinal Cord Tumour Forum

The Spinal Cord Tumour Forum

Benign Spinal Cord Tumour Support & Information

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Adrian's story

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.

My symptoms first started in about 2006 when I noticed that the fleshy part of my right hand was sore and felt like I had scalded the skin. Over the next two years that feeling spread to my left hand, across the fingers of both of my hands and then up my arms and across my torso. At the same time I started to experience a stiff neck and that began to cause me to wake up in agony at night. No amount of pain killers seemed to stop the pain and I started to have to sleep in a chair. I saw an osteopath regularly and she assured me that the symptoms were simply due to my lifestyle, sitting at a desk and in a car for long periods of time. I have always been very fit and enjoyed running and swimming but I noticed that I suffered more pain if I did more exercise. In October 2008 I did a 10 mile run and was left in agony with a painful and stiff neck for the next 10 days. I sought medical advice and was referred to a spinal specialist who suggested that I have an MRI scan.

The scan took place in January 2009 but despite my symptoms I did not expect for a minute that there would be anything wrong. After the scan I was called in to a room to speak to a doctor. He told me that my spinal cord was swollen and that meant that I had a growth either in my spinal cord, on my spinal cord or in my brain. I asked the doctor if I would see my children grow up and he said he couldn't tell because that would depend on what type of tumour it was. That was the day my life changed.

I felt like I had been hit in the face by a sledgehammer. I saw a neurosurgeon a week later. He told me that I had a tumour inside my spinal cord at C6 to T1, probably an ependymoma and that whilst the tumour was not having a profound effect on my mobility I should not have it removed because the operation may cause me to be paralysed. He said he could treat the pain with neuropathic medication. I was prescribed pregabalin and then gabapentin. Both made me feel like my brain was working more slowly. Between February and August 2009 I struggled to cope mentally with the fact that I had the tumour growing inside me like a ticking time bomb. In August 2009 I started to suffer with bouts of hiccups, often for a couple of hours several times a day. I also noticed that my face felt constantly cold, like a fan was blowing in my face. I went to see the neurosugeon's registrar in September 2009 and I told her that I would rather live with the consequences of the operation than having to live with the effects of the tumour. She agreed to book me in for the operation and she picked up her diary to choose a date rather like I was booking a nice holiday.

A week or so later I received a letter from her recording the fact that she had warned me that the operation might result in me waking up with no function whatsoever and ventilator dependent. I found that very distressing because I have two young children and a wife and if the operation went wrong it would have profound effects on them. Two weeks before the operation I suddenly started to struggle to swallow saliva in my mouth. I called the registrar and she told me that the syrinx above my tumour had now reached my brain stem. Then, having delayed the operation consistently up to that point, she told me that I should not wait another two weeks for the operation and she asked me what I was doing the next day! I agreed to have the operation five days later and the registrar prescribed me a course of steroids which cause me to hiccup continuously every two seconds for five days. By the day of the operation I felt like I was dying so I had no choice but to go ahead.

The operation took place on 26 October 2009. The operation lasted four and a half hours. My family gathered together at my house to wait for news. I woke up and then wiggled my toes. I then knew it was all over and everything would be ok. I was in intensive care for 3 days and in a ward for 2 further days. I walked on day three and walked out of the hospital on day five. Within 4 weeks I was able to walk 4 miles in one go and I returned back to work full time after four months.  By January 2010 I had even started to go to the gym to build up my strength and I could run. I have run four and a half miles since. I have been left with some reduced sensation below the waist, I still have a scalded feeling in my hands and the soles of my feet feel crunchy like they are wrapped in bubble wrap. Having said that I work full time, have no problems driving and am fully mobile. There is nothing that I can't do now that I could do before the operation. I no longer take any medication for the pain so I have regained some of my mental faculties. I would say that the worst effect of the experience is that I become anxious much more easily as a result of the anxiety that I suffered during 2009. My tumour turned out to me a low grade intramedullary ependymoma between C4 and T2. The pressure of syrinx apparently stripped the tumour from the nerves and hence the surgeons were able to remove 99% of it.

My advice to those people who are faced with the situation that I was in is simply to listen to your body more than the surgeons who can be very negative. You simply have to work out whether you would cope better with the consequences of the operation or the consequences of living with the tumour. My other piece of advice would be to become a member of this forum and take heart from the fact that all of the contributors have come through their experiences and are alive. I would be happy to speak to anyone facing this dilemma as I am keen to help others as the members of the forum helped me.