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.
I had the surgery which went fine and he 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 rather x rays to check my fused neck bones were ok and that was it job done. I was told it was extremely rare to have had what I had and I attended a couple of medical presentations afterwards for the surgeon!
Life continued as normal until 2000 at age of 27 when I started suffering lower back pain. I went to my GP who did all neurological tests but thought just mechanical back pain as I did tend to walk slightly lobsided but not noticeably. 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 but nothing was showing up from the reflex tests etc. He referred me for a MRI. 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 which confirmed the tumour had regrown.
I had the second operation in 2001. The operation went well and the surgeon said that the tumour, whilst slow growing over time, had got bigger/more sticky since the mri scan but he had removed as much as possible without causing too much damage and i should make a full recovery. After much debate it was decided that i should 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 3-4 days a week, bought my own flat and try to be as independent as I can ie going out , travelling etc but always wary of where I'm going etc. I am always insistent that I am not disabled but have mobility problems!! 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 in the future then so be it.