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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.

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.

n 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 18 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. Recently my neurologist recommended that I use a motorised scooter as this should make it easier for me to get around.

Helen's story:

I was plagued with neck problems for several years and normal treatments like anti-inflammatory medication, acupuncture, traction, neck brace etc had no real effect. By the time the tingling sensations, circulatory problems, weaknesses in arms, bladder and bowel problems had slowly affected every function I could not sleep for more than 1-2hours as I couldn't put pressure on the spine. I could not travel even short journeys by car and walking short distances jarred the spine and left me exhausted. I was in a wheelchair with the right hand side of my body wasting rapidly when the tumour, a 'schwannoma' was found through an MRI scan - like a maggot strangling the inside of the spinal cord from 3-5 vertebrae.

My operation (July 2001)  made a fantastic difference in that I could walk again - after surgery the main problem was with my right arm, as root nerves were cut out during the operation, and have been left with a throbbing pressure 24/7 in my arm and hand with some restriction in movement. Residual tumour remains but its growth rate is monitored by MRI scans and the last MRI in 2007 showed the growth was minute and no further operation is planned. However, also in 2007 I started having problems with the ulnar nerve causing muscle wastage in the pinky area of my left hand, presumably due to overuse of this hand. To rest my left hand I now have to try and write more with the damaged right hand and aim to find a balance by using each hand for different tasks to minimise damage.  I am suffering more from burning sensations in the neck and attribute this to my hand problems.

Meeting other people through this website has been humbling and has helped tremendously.  I would like to hear from others who have had a “schwannoma” tumour. …

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 6 months 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 now all I have is a weak back and that is expected to improve with time. 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 a bit more than before.

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.

Cath's story:

I had suffered with back pain on and off for years, so when it started again this year, I thought, 'Here we go again'. But, after a few days, I realised this was a different pain. I had tingling around my coccyx (tailbone) and pins and needles all the way down my legs into my heels. My GP arranged an MRI scan, which I had within four weeks. I wasn't too worried as I thought it was just a trapped nerve. Two days later, I was contacted by a doctor who explained I had a tumour inside the base of my spinal column and would need to have it removed. I couldn't believe it. I had the op (called a lumbar laminectomy) under general anaesthetic 12 days later. It took about three hours and the surgeons went in at the base of my spine to cut the tumour out. When I woke, I had 16 staples in my back, but painkillers numbed the pain. I had to lie flat on my back for three days and was in hospital for a week. I was off work for five weeks and suffered splitting headaches for two weeks, which sometimes happens after a spinal operation. The tumour turned out to be a very rare kind called a schwannoma, which grows on the lining of the nerves. Thankfully, it was benign and mine was caught early, so I didn't have to have any other treatment, and no nerves were damaged during the operation. Now I'm completely pain-free and I'm really enjoying every moment with my husband and two young children.

Cath's story is reproduced by kind permission of Best Magazine.

Sue's Story:

I suffered from back pain for 8 years. To begin with the pain was in my lower back and would shoot down both legs, as if I had been electrically wired up to something and receiving electric shocks. Over a period of time the pain took on a burning sensation that was in my pelvic, hip area and if I touched the skin on my legs this also would give me a burning sensation. At times I lost control of my right leg, it would lift from my knee and then my foot would flop to the floor, I also started to trip and fall. I could no longer wear heeled shoes because my right ankle kept giving way and I appeared to be in a drunken state, this was very embarrassing. The pain would be worse when I was resting and would keep me awake every night

In June 2003 I went to see my GP and insisted I was referred privately to see a consultant. I saw him within two weeks and was given an MRI scan. As a result of this I was referred to a Neurosurgeon.

The MRI scan had revealed a tumour inside my spinal cord which turned out to be a ten year growth. I underwent a ten hour major operation. The operation was successful to the extent that 95% of the tumour was removed. The tumour started at L4 to T11 and a cyst extending to T2. I was told that the tumour was probably an Ependymoma and a very slow growing low grade cancer. I have some residual symptoms that I have to cope with, but I am thankful that I still have the use of my legs. The next best thing was going to bed and not feeling any pain, those awful sleepless nights have gone. My Neurosurgeon and his team did a brilliant job.

I now have annual MRI scans and have been fortunate, the remainder of the tumour has not shown any change in size.

Michaela's Story:

I was a very fit and healthy 39 year old (I ran the London Marathon in April 2005) and woke up with numb feet gradually moving up my legs in August 2005. After GP referral and an MRI scan this was confirmed as an ependymoma – a rare benign tumour in the top of my spine/neck.

A 14 hour operation to remove the tumour was successful, this was followed after a three month break and then a six week course of radiotherapy to ensure that no more tumours grow back.

The best expectation was paralysis from the waist down but I am now able to walk with a stick and just use a chair for long distances. I have changed my car to an automatic as my left leg is generally weaker and when I am tired I can’t feel my foot so it is easier to have an automatic but I can still drive. I get lots of pain in my neck and shoulder as a result of the operation and take painkillers. I am also going to a reflexologist which I found very beneficial.

I hope to return to employment in the future, probably part time and have sold my business as I am unable to work in the same way as before. It is now seven months after the operation and I can manage light household work and care for my family. I have managed to walk a mile with sticks but was exhausted! But I am not paralysed and I do have a future. Six monthly MRI and consultant appointments ensure constant review and hopefully no further treatment.

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.