The Spinal Cord Tumour Forum

Benign Spinal Cord Tumour Support & Information

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.