UPDATED – My Story April 2025
It has been over fourteen years since I initially composed my story below in 2011. Since then, I have relocated to my own house instead of a flat, and have had a couple of different jobs since, including my own funding consultancy. I now work for the Civil Service part time to accommodate & manage my condition.
It has had an impact on my career and I feel held me back because of my physical limitations. That does get to me but same time financially I generally do okay, even if I am no where near I thought I would be career wise at this age now.
As I stated, my physical limitations have persisted over these years. Although age impacts everyone, fortunately, it has not significantly affected my body to the position where I need the likes of a wheelchair or needing carers everyday. I would have to be honest with myself and say that my walking is probably restricted than before, primarily due to foot drop and decreased mobility during the COVID years.
Approximately two years ago, I undertook neurophysiotherapy, rehabilitation, which you can read about on our Blog.
This helped to counteract aging’s effects on my condition and identify new rehabilitation techniques. Recently, I have commenced bi-monthly physiotherapy sessions again to maintain my mobility and ultimately retain my independence. These sessions are proving beneficial.
Additionally, I have had a downstairs bedroom constructed, complete with an en-suite, to address future needs and mitigate issues related to stairs. I had recently started to encounter difficulties with climbing stairs and experienced falls; the downstairs bedroom and washing facilities have provided peace of mind for myself and my family.
While I aspire to walk with greater flexibility, I will never lose hope.
Some days, I walk okay, albeit always with an aid or aids and foot drop. My pain is fairly manageable most of the time, especially after the typical morning regimen of painkillers. I always get pain in the mornings. I can get nasty flare ups of constant pain but thankfully at the present time I tend not to need strong pain medication continuously throughout each day.
I do suffer from fatigue. It varies; some days I feel good, while other days I feel completely exhausted despite taking vitamin supplements. This is frustrating when plans are made, but resting as needed is essential. Hence, I am unable to work full time, even from home in a seated position.
Managing expectations is crucial, learning continually that nerve misfiring is unpredictable. I try not to fight it too much as ultimately it will impact on you for longer and more severely.
Unfortunately I was never able to have my own children which is a major disappointment. This is probably down to the second operation and its after affects, including possible treatment side effects. However, I do have four amazing and clever nieces, aged from three to eight. They make me smile and proud. Yes I do spoil them, probably too much as an uncle!!
Even twenty-four years after my second operation in 2001, I remain resilient. Although I still experience ‘down”‘days, both physically and mentally, I strive to continue living as best as I can. I get taxi drivers ask me “what have you done to your leg, is it a football injury?” etc. It shows to me that many view me as having done something to my leg like a common accident.
I prefer to view myself, not as being “disabled”, but managing a condition resulting from a rare diagnosis. Oh, and the large trophy scar on the back of my neck as a reminder!!!
MY ORIGINAL 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 in Liverpool and, after loads of tests etc, I was eventually diagnosed with a benign intramedullary [ inside] astrocytoma spinal cord tumour in the C4-C6 section of the neck. 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.
I had the surgery on my spinal cord which went well with a laminectomy where they remove parts of your vertabrae. The surgeon at the time said he had removed 95% of the tumour and the rest was cauterised by laser so it couldnt “escape”. It took me about 6 months to fully recover and to learn to walk again etc. I was left with a weak hand,some numbness,neck sore/stiff at times but apart from that I was back to normal. I never had any follow up MRIs at the time, but rather x rays to check my fused neck bones were ok. That was it job done!
I was told it was extremely rare to have had what I had,like almost 1 in a few hundred thousand! I attended a couple of medical presentations afterwards for the surgeon!
Life continued as normal after that with A levels, Economics & Economic History at Leicester university, then a post grad degree in Economics & Resource Management at Leeds Uni, before finally entering the world of work.
It wasn’t until 2000 at the age of 27 when I started suffering very painful lower back pain. I went to my GP who did all neurological tests but thought it was mechanical back pain, as I did tend to walk slightly lobsided at times. I tried physio etc but the problem didnt go away and I was referred to a pain clinic. He did neurological tests and thought it would be the tumour recurring, but nothing was showing up from the reflex tests etc. He referred me for a MRI scan. By this stage, I noticed I was getting more wobbly and a bit weaker in the legs but not dramatically. I was referred back to the Walton Centre in Liverpool, a specialist neuro centre, which confirmed the tumour had indeed regrown.
I had my second operation in early 2001.
The operation went well again apparently and the surgeon said that the tumour, whilst slow growing over time, had got bigger/more sticky since the MRI scan. He advised us he had removed as much as possible without causing too much damage and that I should make a full recovery.
After much debate it was decided that I would also undergo 6 weeks of radiotherapy to try and kill off any residual tumour.
Unfortunately I did not make that full recovery again second time around. I am at the point now where my mobility is limited. I can walk short distances ,using crutches, before my weaker right leg really starts to drag. I try to use a stick indoors. I do also suffer from nerve pain, tightness in both legs but generally keep it under control with a combination of low doses of Amitriptyline, Lyrica and codeine. I also have bouts of other problems associated with spinal injuries but this tends to be well managed. I can get tired and have days where i get so fatigued to the point where my body just seems to shut down for 24 hours. The hospital haven’t been able to explain this but thankfully this doesn’t happen too often.
Having said that, I do work 3 to 4 days a week, bought my own flat and try to be as independent as I can i.e going out , travelling etc but always wary & bit anxious of where I’m going etc.
I am always insistent that I am not disabled but I have mobility problems instead!!
At the moment I have follow up 1 yearly scans and my last results showed no change after nearly 9 years. I guess I still feel very aggrieved that it happened again and that I never fully recovered.
I do worry about the future but I always have that little bit of hope that things can always get a little better each year and, if this is the cost for being tumour free, then begrudgingly so be it.