A Potted History - Part 2
I continued to experience regular stress fractures, difficulty walking and was still reliant on crutches at all times, as well as a wheelchair occasionally. Things settled for a while in my late teens but by my early twenties the toll that had been taken on my back, after years of a tilted pelvis and my right leg compensating for my left, resulted in increasingly debilitating episodes of back spasms and pain. My Consultant (who I will refer to simply as H) knew how important getting through my Undergraduate degree in one go was to me and we agreed that I could finish this uninterrupted but would undergo surgery immediately upon finishing. In July 2006 I had an ISKD fitted in my femur, for my third leg lengthening procedure. We hoped that correcting the imbalance in leg lengths and my pelvis would alleviate the pressure my spine was under, and physio could then support my back better.
Recovery was long and difficult but for a while the intended result was definitely successful. Then the back spasms started recurring in Summer 2008, leaving me completely bedbound and reliant on the support of my housemates and the care system, as I lived some distance from family. There didn’t appear to be much that could be done medically and I just got on with things as best I could.
In February 2010, now living in Manchester, I had a sudden onset of extreme back spasms and pain and within a few hours could barely stand up straight and was having to shuffle my feet in an attempt to propel myself forward and ‘walk’. I went to both my GP and A&E in extreme agony and was told that there was no specific cause, it was just some spasms that would eventually ease. I went to stay with my parents for a while and seeing how bad I was they called their GP out on a home visit for me. Their opinion was the same: just some spasms, try to keep moving and it’d ease. The fact I couldn’t stand up straight or move my legs properly didn’t seem to register … eventually, in desperation I called H who, trusting me when I said I knew something was wrong, immediately offered me a next available appointment. Somehow I got up to Edinburgh where he was now based and he examined me. Agreeing that there was definitely something going on upon seeing my movement and my description of the pain he offered two options: 1) go home and wait for an outpatients appointment for an MRI, which could take up to 8 weeks or 2) be admitted as an in-patient and have an MRI done within 3 days. 3 days later an MRI confirmed that I had a slipped disc at L4/L5 and the entire muscular system in my back was seized up.
Between 2010 and 2011 I received treatment for my back in Manchester but red tape caused by the referral coming from Edinburgh meant it was months after the diagnosis before I began any treatment, during which time I had really deteriorated. By summer 2011 I had reached the stage of having to choose between feeding myself or washing and dressing myself on a daily basis: doing both was too much, too painful, too exhausting. I moved back to my parents home in Leicestershire that autumn and my care was transferred once more but yet again with a massive delay.
Because by now I had been unable to walk properly for 18 months, let alone continue my usual activity levels I had begun to gain weight and decondition. This started to take a toll on both of my legs - the slipped disc had compromised my right leg but of course the left wasn’t strong enough to take over so it was a constant battle between the two. There was also the concern that the ISKD nail had been in my leg for more than 5 years now and not being built for permanent use really needed removing. H wanted to leave it until my back had improved and I could lose some weight so we just had in the back of our minds that at some point that removal would take place.