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Donna’s Story

Benign Meningioma at C2/C3

My story officially began on 6th December when I received a phone call from my GP telling me I had a tumour just below my brain and it was serious but he didn't know how serious.

I had been suffering from ongoing neck pain for a considerable period of time, about 18 months – I have always had back pain and I thought the neck pain was connected to that. I tried physiotherapy, acupuncture, chiropractic treatment and had an x ray.  My GP didn’t really know what else to do so I was referred to a pain management clinic where I was told it was wear and tear due to my age (I was 39 at the time!)

In the summer of 2013 the pain was really severe, I was taking painkiller after painkiller which is all the pain management team could suggest.  I was put on an 18 week waiting list for a steroid injection, I was so desperate I paid privately for this injection which of course didn’t work.   My pain was much worse on an evening, I would often wake up crying with the pain, in hindsight I should have gone to A&E.  I did keep visiting my GP but was never offered an MRI scan.

I finally became very desperate and I had a private MRI scan on 30th November 2013, the results of which I got as above on 6th December 2013. From that point I saw a neurosurgeon on 17th December 2013 and was booked in for surgery on 3rdJanuary 2014. At the appointment on 17th December I was told that it was highly likely that my tumour was a benign meningioma. That was the good news, unfortunately the position of the tumour was not. It was/is right at the top of my spinal cord and if it had been left it would have paralysed me. There was also a high risk of paralysis during surgery, however I had no choice (thankfully!) In the weeks leading up to the surgery I had pins and needles in my hands/fingers, I struggled to do buttons etc. but the biggest symptom was the pain.

I cannot describe the pain/despair I felt before my operation although it may sound silly but I was relieved that something had been found, that was causing my pain – I could not have carried on the way I was, it was affecting my whole life.

I was in theatre for 8 hours, not sure how my husband and family coped with that but it is surprising what you can get through if you need to. When I woke up the antitheist asked me to wiggle my toes and my fingers, I could do it and the feeling of euphoria was unreal (probably helped by the concoction of drugs!)

I was on the High dependency Unit for 24 hours, not a place I would like to be on again but seeing some patients on that unit made me realise how lucky I was. I had numbness all over my body, which is very strange and not something I was told to expect - getting comfortable was difficult. I was given morphine and other drugs to help with the pain. My left arm was also paralysed, lucky for me this was temporary, it was also at least 3 – 4 days before I could lift myself up to sit up as the numbness was so great.

I left hospital 13 days after my operation, the time spent in hospital felt like a life time and I became close to some of the other patients in that short period of time. When I first sat up i.e. moved my back the pain was agony, and I dreaded every time the physiotherapist’s turned up. However they knew what they were doing and I could walk out of hospital when I left, although my arm was far from right and I was still on a lot of tablets.

It is now almost a year since my operation, I have recovered very well, my arm and hand are both fine, it was a good few months before I could drive again due to weakness in my hand. I had physiotherapy at home after the operation and I made sure I did all the exercises they gave me. I returned to work 4 months after my operation, at the time I needed to do this, really in my mind to know I was ok. I now think this was too soon. The hardest part for me is still the tiredness (fatigue) and I do still have a lot of pain and stiffness in my neck (it is now nerve pain that I have from the nerves damaged during the operation.) I also have general pain in the shoulder/top of back pain, I had a part of the bone removed from the top of my spine for access to the area. My scar has healed great and I don’t really think about it.

I am reducing my hours at work, I work in an office but sitting at a desk is not ideal and these are the frustrations, I cannot do as much in the house as I used too, I can’t carry heavy bags this type of thing, if I do it aggravates my back/neck and I can be in a lot of pain for days. I still take medication and again I am used to this and have accepted it.

For anyone reading this who is going through something similar, I know how scared and hopeless you will probably be feeling but please believe me you can get back to normal. I have changed and life after the diagnosis is something that I live with, they couldn’t get all of the tumour so a little bit is left behind that may in time grow.  I am scanned every 3 months, this I am now used to and I pray each time for good news. I am grateful for every day of my life, which I don’t think I was before, I realise what is important, it certainly puts things in perspective. My family and friends were fantastic during the horrible period of my life – there were some friends who didn’t react as I would have expected and unfortunately were no support at all.  Other relationships have been made stronger and I now make time in my life now for the important people, in some ways this has changed me as a person for the better, it has certainly made me stronger.

Just one thing to add, once I had a diagnosis the hospital were fantastic, my consultant/surgeon was great and continues to be so – he is my hero!

I am happy to answer any questions that anyone may have via the message board.