Spinal Cord Tumour Forum

The Spinal Cord Tumour Forum

Benign Spinal Cord Tumour Support & Information

Your Stories

If you would like to contact us to tell us your story, we would be very happy to hear from you. Also, let us know if you would like your story to appear on our website. Please drop us a line if you have comments on any of our stories. Perhaps you have been affected in the same way.

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.

Carole's Story

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.

After the operation the use of my fingers mainly improved but I was left with problems with walking and balance and some loss of feeling in my legs and feet. The operation was in my neck and afterwards it was put back together leaning slightly forward. This has badly affected my posture and in order to balance myself I stand with my back arched. Over the years this arch has become more pronounced and I suffer from frequent back pain.

In 2001 my walking suddenly became considerably worse and I had another MRI scan. At first it was thought the tumour might be growing again but eventually it was decided that my spine, which has become increasingly fragile since my operation, was the cause of the problem. My walking problems have also increased because I can't feel the ground properly and my legs are frequently stiff and painful. Although it's 24 years since my operation I still get pins and needles and other sensations in my legs and they often go rigid when I stand for too long.

Melissa's story

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.

My spinal cord tumour was located at the bottom of my spinal cord and hanging out the base of it, apparently about the size of a sausage! It was using up all the space in that position and preventing the nerves getting through to my legs and feet, hence why I had been falling over. I was told that there was only an 80% chance the operation would be successful and even if it was, I would still be left with nerve problems in my legs and feet where the nerves had already been damaged. The 20% chance of risk included total paralysis from the waist down. To be explicit, as was explained to me, this would include no control over my bowel and bladder and no sexual function. I was also told that because the tumour would be hard to remove without causing further damage, they may have to leave some of it. I would then need radiotherapy which may affect my chances of having children. It all seemed really unfair.

My family and I cried and held each other and I wondered how I would cope with my 2 year old son if I was paralysed. Five days later, I was admitted to Frenchay hospital and had a 7 hour operation to remove the tumour. It was terrifying but successful. I came round from the operation able to wiggle my toes – a sign that I hadn’t been left paralysed and that no damage had been done. In fact, they had removed the whole tumour, so no radiotherapy was necessary.

It is now 3 years since the operation. The tumour turned out to be a myxopapillary ependymoma – between T12 and L2. The recovery process following neurosurgery is slow and difficult. The first 6 weeks are hard but things improve. Even the nerves appear to have repaired themselves and I have no weakness in my legs and feet, as expected. In brief, I am almost leading a normal life, except that I need to rest more than before.

Despite fearing that I would not be able to have another child because of the impact to my back, I went on to have a beautiful baby boy 10 months ago. Being pregnant following a SCT is very hard but achievable. My little baby boy, Samuel, is proof that life can continue after a spinal cord tumour!

Spinal cord tumours are extremely rare and when I asked why I got it, I was told it was just bad luck. But, I actually feel lucky rather than unlucky to have survived this experience so well physically and mentally. I now show off the scar on my back with pride! . Apart from a yearly MRI to check I’m tumour free, I have no reason to see my consultant more than anyone else.

 

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.

 

Clive's story

Spinal cord tumours can occur in men as well. I had a C1-C5 ependymoma removed in 1995. 

Since around 1991 I had been experiencing bad neck pain which increasingly failed to respond to analgesics. Unfortunately, this was misdiagnosed as a "trapped nerve". But after a few years of non-responsiveness to traction, electro-therapy, massages and even stronger analgesics, I had growing difficulty using my fingers and my hands were starting to look odd due to muscle wasting. In 1995 I switched from seeing an orthopaedic to a neuro-surgeon, who after a thorough physical examination sent me for a MRI scan. This was when I was told I had a tumour inside my spinal cord. 

I have to say I was so sceptical that I saw another neurosurgeon for confirmation. He explained that most likely the tumour had been slowly growing for some years and while it was unlikely to be malignant it would, if I left it untreated, eventually paralyze me and cause an early death. (I was 49 at the time). 

The options presented were A) surgical removal of a small section of the tumour for a biopsy followed by a long course of radiation therapy or B) attempt a complete surgical removal. It was explained that because of the size and position of the tumour that complete removal was not guaranteed and had risks. 

I was lucky at that time to find a surgeon with vast experience of ependymomas. He and his team removed the complete tumour. I did not know this for a few days as I was in intensive care and not very with it. Although technically a quadriplegic, my toes wriggled and the surgeon assured me that I would regain most of my functions. At this stage it really helps to have a positive medical team and supportive family and friends. At times I wanted to give up. I had severe nerve sensitivity such that for days I would scream when touched. Bowels and bladder did not function at all well. Even my breathing was irregular. 

Gradually, with fantastic support and skilled, expert therapy I regained the use of my arms and legs. I learnt to walk again albeit a little asymmetrically. The nerve pain slowly came under control with medicines. 

I still walk in a lopsided sort of fashion. I cannot run. I weaned myself off the medicines and live with the residual nerve pain and hypersensitivity. I have embarrassingly clumsy hands and poor proprioception I have recurrent UTI's due to ongoing poor bladder control. My neck does not turn easily. I get tired more easily. I am irritable and grumpy at times but my wife insists that is no different from before.

Lisa's story

In January 2005 I sneezed and I remember a shooting pain run down my shoulder and arm. A few months later I was aware that I had a bad back and what I thought was a crick in the neck plus numbness along my arm and fingers. At that time I was exercising at the gym regularly and thought that perhaps the exercise was making me ache or perhaps the bed wasn't good. I also felt totally exhausted all the time and wasn't sleeping well as my arm felt like it had surges of energy through it.

I was bringing up my three young children. After a year of physiotherapy and diagnosis of carpel tunnel syndrome I eventually had an MRI and in February 2006 was told I had an intramedullary tumour T2 to T5. I was also told that because my deficits were minor and that surgery would almost certainly create more damage, possibly even quadriplegia, that it was safer to monitor me.

Since then regular MRIs have not shown any significant growth, though new deficits such as numb patches across my body and altered sensation/numbness in my right foot. The pain has got worse and I now take Tramadol. I find it very difficult not only physically, as I can no longer do the things I used to such as boxercise, but also mentally. I have been assured that I will have an operation but it is just a matter of when and then of course having to deal with how that will go. I feel if they feel they can't do it now without causing major damage then what will have changed when they do operate?