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.

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.

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Ian's Story

It's now 10yrs since my operation and I have now been discharged from the hospital since numerous M.R.I. scans have shown no signs of the tumour growing again.

I still have pain in my shoulders but can manage with pain killers my doctor has given me. Some areas of my shoulders are still numb but this is probably a result of the operation.

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Helen's Story

Update August 2018


I had my last MRI scan in 2010 and as far as my consultant is concerned I am not any longer ‘on the books’. The 5% tumour that remains post operation is contained in a protective sheath that my body seemingly has created and has not increased in size from 2001 to 2010. I still have pain in the shoulders and oversensitivity in my right arm and hand.

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Phil’s Story

Schwannoma - Intradural Tumor L5 & T2

My story started approximately 3 years ago when I went to the doctor because I had pain in my right leg, initially
started around my hamstring but with time moved further down my leg. Following my examination I was told I
actually had sciatica and went for a number of physiotherapy sessions and was advised to exercise on a regular basis, apparently walking was ideal.

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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.

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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.

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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. 

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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.

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Megan's story ...

My only symptoms in august 1996 were the third finger of my left hand itching constantly. After tests for carpel tunnel proved negative I was referred to an orthopaedic surgeon this took until March 1997. By this time the last three fingers and wrist on my left hand were tingling, burning and aching.

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Paul's Story

I first started having problems when I was 17 in 1990. At the time it took ages to diagnose why my right hand had gone weak, I had sweating episodes and eventually I was becoming wobbly and legs started to get weaker. I was eventually referred to the Walton centre and after loads of tests etc I was eventually diagnosed with an intramedullary astrocytoma(benign) in the C4-C6 section. The surgeon was confident he could remove it but said this type of surgery was new and that only couple years back he wouldn't medically have been able to do anything.

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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……..

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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.

 

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