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.

Lesley's Story

In 1987 one Saturday morning the phone rang downstairs and I got out of bed and fell straight to the floor. Thinking that I just got out of bed too quickly, I got up and carried on to the top of the stairs where my leg just gave way again.

I fell to the bottom but this time I couldn’t get up and I managed to drag myself to the phone and get help. After visiting the hospital I was told I had fractured my coccyx and I had quite bad pains in my legs. After visiting the doctors several times I was sent to see a consultant and had lots of different tests, one of which was an injection of dye and x-rays.  That showed I had a lump near my spinal cord. I also had an injection of steroids into and up through my coccyx which did relieve the pain in my legs after a while.  I was then referred to a neurosurgeon who sent me for an MRI, and was informed that I had a growth in my spine and if I had an operation there may be a 50/50 chance that I wouldn’t walk again.  Personally I didn’t like these odds and decided to leave it as it was and never heard from them again.  This was in 1989 and I was aged 24.

In that same year I moved house and met my present partner, in between the odd bout of leg pain, and being told that the pain was in my head I got on with life.  In 1996 I had a miscarriage.  In 1999 I had a healthy baby boy.  In 2001 I was pregnant again.  The 20 week scan highlighted that the baby had spina bifida and encephalitis and we decided to have a therapeutic termination as the baby would not have any quality of life.

In May 2002 I started to have pains that would make me stop on the spot and I felt like I was being paralysed.   My doctor read my last letter from the hospital I’d attended ten years earlier.  I was sent there again and was operated on within the week. I have a dermoid cyst (intramedullary) which is on the very end tip of my spinal cord.  I still had a tether, which was cut, and fatty filium that was stuck together, which they split.  I have had a laminectomy between L1 to L5 and I also have an extra vertebra.

This took some getting over when you have a three year old child and wanted another baby and was told not to have one.  Two years later, after lots of stress and scans, I had another boy, but had to have a C-section under general anaesthetic.

In 2011 I had a lot of pain in my leg but my doctor wanted me to try Amitriptyline.  I only managed it for one week as I wasn’t myself and it wasn’t for me.  I then went on Diclafenic and muddled along.

By February 2012 I was in agony but my doctor still didn’t want to send me back to the hospital, but did send me for an MRI.  This took three weeks and then the result showed that the tumour had grown back.  It then took another five weeks to get an appointment at the hospital, by which time I couldn’t drive, walk any distance, and was being pushed around in a wheelchair.

I had my second operation on 23 May 2012 and was told that the growth is likely to be on an 8 to 10 year growth cycle.  I went back to the hospital a couple of weeks later and was still in a lot of pain, so it was suggested that I take Pregabalin and then get referred back when I think it has grown back again.

So that’s where I am now.  It would be great if there was more information out there.  I understand that it is quite rare in this position.  I don’t know if it is linked to spina bfida and nobody wants to say yes or no.  As I would see it, it would be good to have an MRI every year or two.

Sarah's Story

In December 2013 I was diagnosed with having a “suspected” juvenile pilocytic astrocytoma” or “Ependymoma” located at my T4/T5, it fills the entire cord and space. Currently I am a watch and wait patient and very happy with my consultant.

I’ve already waited one year and had my follow up MRI only August 2014 where it showed no growth and after getting copies of the discs, I can assure myself there is no growth because I have studied them with a magnifying glass (!), my surgeon classifies this as a very benign growth likely to have been present since birth and is more than likely an Astrocytoma and has seen and operated on one similar but larger! I have not had a biopsy as not worth it and if/when I get the operation I will only have up to 95% removed if possible due to not wanting to leave the spinal cord unstable.

I am not without worsening neurological symptoms however, and these are under the close watchful eye of my surgeon. His advice is clearly why risk further deficits at this point when you are fully functional and will only intervene when it means a patient will benefit from his surgery.

My symptoms have been present since my teenage years but like many of us I had a blame card for my symptoms, car crash when I was younger, keen horse rider, got a kick from a horse and no pain no gain attitude…  my key life symptoms were a burning back pain across my thoracic region after walking too far or doing too much and tingles in left foot when horse riding 3 hours plus, ‘wooshing’ in my ears when getting up too quick. Gradually as time went on I used to blame this silly tingle for cutting my circulation when sitting up on a horse and doing too much. I also used to get quite a painful hip when cold weather struck and shooting pains in left leg calf and shinbone area, drs were baffled.

I had a failed pregnancy in August 2010, after this I kept being very sick and bad where I found that I had a tiny gallstone, in March 2011 after 2 years of excessive bouts of stomach related pain and sickness and left leg pain finally they found a tiny gall stone and blamed it all on that! Even today I still get referred pain to my stomach area at times.

My symptoms worsened during a successful pregnancy (April 2011-Jan2012) when I was told I had pelvic girdle pain and given a belt support to wear… other than this I had a magnificent pregnancy (the best I felt ever), and continued to be active albeit a weak left leg. I went in to labour fine, however I required an epidural and it was this moment that changed everything, I lost the use of my left leg completely during labour and for some 3 months that followed I needed to learn to walk again due to dragging my leg, electric shocks left of neck out at the knee and knee would give way every now and again, I got back to horse riding which helped massively perhaps due to core muscles being stimulated?

I went back and forth to the GP and got sent to a vascular clinic and a pain relief clinic which neither were related to my neurological issues I presented them with. The pain relief clinic sent me for an MRI of my lumber area as my symptoms were weak hip, then six months later I returned as no real improvement and I ended up suggesting that I had MS or a brain tumour and was sent November 2013 for a full MRI scan…

I got a little flyer saying I had a hospital appointment… here we go I thought this is serious! So I attended on the 18th December 2013, and there I was told the devastating news that I had a “tumour” I got asked to walk up and down the corridor and to run? I could do both albeit with a weak left side and could jump up and down just about on the left leg without it collapsing, there I explained I get a cold left leg, back ache, numb big toe which I was told these are nothing to worry about but symptomatic of my tumour, go live my life and see them in a year…. I was told however that these tumours can have progesterone receptors and so this is why I would feel worse in the luteal phase of the month and also if I were to fall pregnant again it would carry the risk of tumour growth.

In August 9 months after my first MRI scan and after 9months of worry, being scared, finding all the new and old symptoms I brought my MRI forward as I couldn’t bare to wait any longer, and the result is no growth! I am active still carry out my sports 6 days out of seven (my choice) and stay as active as I can, but also rest when I need it as sometimes my body cant do what my brain wants it to do!

I’ve made some healthy life style changes and took up weekly CBT therapy, self help books like “feel the fear and do it anyway” and see an osteopath as this helps with my “hyper sensitive symptahetic nervous system” which helps so much with the anxiety and exhaustion which this leaves us feeling so deflated and tired, I do not take any pain meds or anxiety meds and am coping well by remaining positive and sharing and receiving knowledge which is key to getting through the emotional torment and happy for anyone to contact me anytime.

Will keep this updated in the event I move to post operative stages.

 

Stevie's Story

Benign tumour in the lower back (L3/L4) – pain-free again! It’s wonderful to think that I forget that this time last year I was in agony……..

Like many people I try to keep fit and healthy.  I enjoy exercising and eating relatively sensibly so it was a shock to me when more or less out of the blue I developed severe pain in my hip.  I had been starting to get a few niggles doing ‘safe’ exercises, like arching my back in ‘Cat’ pose, but other more challenging exercises weren’t causing me a problem so I had been a bit puzzled.

However, the new pain in my hip area was something else. Although not totally pain free, I could walk for miles but when I tried to sleep in bed, as the night wore on, the pain got worse and worse. I tried looking on the internet for clues but everything I found about backs and discs seemed to suggest that lying down should ease any pain.

It was suggested that backs get better with time so I tried to get by sleeping in a reclining garden chair for a while.  Doing so enabled me to get some rather disturbed sleep. I tried again to sleep in my bed but the increasing pain in my hip became so bad that it was almost too painful to move to get up again. Sneezing, coughing or passing wind was also an excruciating experience.

When I suddenly developed severe constipation I couldn’t sit down either so I went to see the emergency out-of-hours doctor. It wasn’t thought that my problem was sciatica and I was sent away with slightly stronger painkillers and some laxatives. However, even with the new painkillers I couldn’t sleep for any length of time.

I saw another G.P. who sent me away with some information on non-specific back pain and advised me to go on the very long waiting list to see a physiotherapist or to consult an osteopath privately. There were factors that might have indicated (as the doctor suggested) that my problem was caused by something ‘mechanical’ but I still felt something else was wrong.

As the pain largely disappeared during the day when I walked around, it wasn’t much in evidence when I consulted an osteopath. He was unable to identify the cause of my problem as he couldn’t replicate the pain by manipulating my body.

Suggestions for sleeping more comfortably (e.g. pillow between knees) made no difference at all.  I was almost beside myself with lack of sleep but fortunately, after two appointments, the osteopath referred me back to my surgery with a recommendation to try me on a low dose of amitriptyline (which can help with nerve pain).

The G.P. still thought the pain was caused by something ‘age-related’ that would clear up with time but I wasn’t convinced and I managed to persuade him to refer me privately for MRIs for my lower back and hip area.

Thankfully, the amitriptyline had already started to ease the pain when I went for the MRIs as they took much longer than I had anticipated.  I was told that I would get my results in around five days unless there was anything of concern.

I thought I was in the clear after a couple of days but, unfortunately, my G.P. had been away from the surgery so ended up ringing me later rather than sooner. The report with the MRI suggested I saw a neurosurgeon as soon as possible.

Thanks to private health insurance I was able to frantically research neurosurgeons in my home town and arrange a consultation very promptly.  The consultant I saw confirmed a tumour on my spinal cord. I came away from the consultation thinking ‘He wants to do what? In a few weeks’ time? He must be joking!’

The consultant had told me that he thought the tumour was probably a neurofibroma with a 90% chance of it being benign. However, he couldn’t be sure without surgery to remove it.  As there is a rare condition called neurofibromatosis, whereby multiple neurofibromas develop in the body a complete set of MRIs of the brain and spinal cord were arranged to see if this was a solitary tumour.

From being fit, healthy and active I suddenly faced having a major operation. Part of the bones in my lumbar spine needed to be removed (decompressive laminectomy) in order to get to the tumour which would then be cut out. It was such a shock I really didn’t know where to turn for advice or to check that this operation was really necessary. This condition was outside the experience of my G.P.

Researching the internet I came across lots of worrying reports on overseas forums about bad experiences people had had. However, I reasoned that perhaps those people who had had positive outcomes didn’t post as often as those who needed on-going support.

Fortunately, I also found this forum and the helpline at the Brain and Spine Foundation.   The manager of the helpline patiently and competently answered all my ‘silly’ questions both before and after the operation and a forum member shared her first-hand experiences with me of being in a similar situation.  This was so useful as volunteered information from the consultant was sparse.

Thankfully, the new set of MRIs confirmed that this was a solitary tumour. After a few weeks, the low dose of amitriptyline (10mg) was doing a sterling job blocking the pain, making me feel as though maybe everything would resolve without an operation. However, I knew by now that these tumours don’t go away but continue to grow, albeit slowly. As mine was in a place the surgeon felt sure he could remove all of it safely I agreed to go ahead with the operation sooner rather than later as I felt that significant delay might increase the chance of permanent nerve damage.

I spent about a week in hospital and I was extremely lucky in that the neurosurgeon confirmed that he had managed to remove all of the tumour which was, as he had expected, a benign neurofibroma, and that there would be no need for any further MRIs.

I went home when I was able to demonstrate that I could get up and down a few stairs unaided. However, I wasn’t prepared for just how helpless I would be. Before I could try and walk a few steps outside I had to persuade someone to put my shoes and socks on for me as I couldn’t reach that far.

Thanks to the operation I was able to sleep soundly through the night once more which was fantastic.   I received no official advice about stopping the amitriptyline but I gradually cut down on it in case there were any withdrawal symptoms.

Nor was there any advice given as to how I might start my rehabilitation. I chanced upon a booklet on the internet: Lumbar Spinal Surgery – information for patients produced by King’s College Hospital.  I found the gentle exercises in this booklet very helpful and I worked progressively towards being able to do them more fully over a period of time.

As I got stronger I also built up the length and time I spent walking each day. At the beginning it was a challenge to walk to the end of the garden and back. With time and gentle perseverance I worked up to walking between one and three miles a day

The initial estimate as to when I might start working again (a few weeks) was grossly overoptimistic. Advice from the helpline and the forum was more cautious. My advice, in retrospect, is that you shouldn’t expect to heal as quickly at work as you do at home.  Even if you have a desk job you might be surprised at the strain it can be sitting all day if your back is still not back to full strength.

Fortunately, I discovered that having deep tissue massage on my hip flexors helped me to stop walking like John Wayne when I got up from sitting for a short length of time. These muscles had got very tight compensating for my weak back muscles.

I was very lucky to have the operation quickly but the speed meant that my mind was still in shock for quite a while afterwards.

A year on, I can still feel a slight numbness in a couple of my toes that developed after the operation.  However, the ‘scaly’ skin sensation I had on the side of my calf has now cleared up. I have been reassured by my friends on the forum that nerve damage is likely to continue healing over a couple of years.

My back does not feel quite the same as before. Maybe it will always feel a bit different. HOWEVER………….amazingly, I now often forget that I was in agony and needed an operation.
I have no problems these days arching my back in ‘Cat’ or reaching my toes!  I consider myself to be extremely lucky. I am free of that debilitating pain and back to feeling fit and healthy again. I am looking forward to finding out what the next 12 months will bring.

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”!

Ian's Story

My problems started in Jan 2007, my right foot felt cold to me but was warm to the touch.

I went to see my g.p. who in turn sent me to see an orthopaedic consultant, he sent me for a m.r.i. scan after which I went to  see the consultant again and he told me the scan was clear, but by this time my leg was going numb.The consultant then refered me to a neuro consultant.

By the time I had my appointment with the neuro consultant it was Oct2007 and my leg was really numb and I also had burning sensations in my leg, anyway the n. consultant did various tests on me and realised I had a problem. He sent me for another  m.r.i. scan but this time the scan covered all my spine not just my hip area as before.

Some 3weeks past and I received a letter from the n. consultant telling me they had found a swelling on my spinal cord and to see my g.p. immediately. I went to see my g.p. who told me I had a tumour on my spinal cord; the word tumour frightened the life out of me but he told me it was probably benign. An appointment was made for me to see a neuro surgeon at a neuro hospital. Chistmas/new year went by and now I was having great difficulty in walking and could no longer lift my right leg. I got to see the neuro surgeon  on 08/02/2008 and he explained I needed surgery to remove the tumour and if  I didn't I would definetly end up in a wheelchair, he also explained the risks involved but the choice for me was easy.My op was arranged for the following Wed.

After my op I realised all the numbness had disappeared and I was able to lift my legs again, I was able to walk again ; at first with the help of physio's then with a walking stick. After leaving hospital I received physiotherapy for about 4months, then probably about another 2months before I had reasonable movements in my shoulders.

I returned to work (on light duties) after 9months after which I carried on as normal. I still have pain in my shoulders, around the op scar and especially in my arm pits but this is a small price to pay for being able to walk again.

I still see the neuro surgeon every 12months and have a m.r.i. scan every 2years just to make sure the tumour does't grow again. My tumour was a neurofibroma at t2.

As you can see from my story I have been very lucky and wish to thank all at the local hospital for all their skills and help when I needed them.

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.