The frame had been on for a few weeks. I had returned to school in the Autumn to begin my final A-Level year. I had been turning the struts according to the program I was given. I had been cleaning the pin-sites as instructed and had so far, had no infections. I had check-up x-rays, which resulted in a further strut turning program being provided, which was fine. Everything was going well. There were no problems…. Yet!
Towards the end of the second turning program, I began to experience increased pain as the struts were adjusted. Thinking this must be normal, and not being one to keep whinging about pain, I just took more painkillers. (Only paracetamol mind, nothing stronger!) However, one night, as I lay down, I experienced the most intense pain I ever have in my life. It is no exaggeration to say it was absolutely excruciating. A shooting pain which went right from my big toe, up to the side of my lower back. I didn’t get any sleep that night, as the only way to ease the pain was to sit up, I was so frustrated. The following night, the same. Exhausted, and in great pain, Mum tried to get hold of some stronger pain killers for me from a GP on duty at night. Refused, even under these circumstances, we had to make a trip to A&E. After a few hours waiting, finally I was given some much stronger painkillers to take, which soon relieved me enough to get a little sleep at home.
The next night though, the shooting pains returned, and the stronger painkillers I had weren’t even taking the edge off it. Determined not to be one of those people who is constantly going to A&E or the doctors, I tried to carry on, just go to bed and try to get some sleep. A few hours of these efforts and I was not asleep, but crying with pain (and trust me – this is NOT normal behaviour for me! I don’t cry!). As I got off my bed to go to A&E for the second night running, the realisation hit me. I couldn’t move my leg forward, or up. I couldn’t even move my foot up to position it flat on the ground. What had happened?! In pain, and now in absolute panic, I dragged myself backwards (using crutches) out of the house and into the car – I just wanted someone with a medical understanding to tell me what was wrong! Finally, after an exhausting backwards walk/leg drag! from the car into A&E, I was examined by a doctor. When I say examined, I should really say ‘looked at’, as they wouldn’t touch the frame or go anywhere near it. That hospital has no experience of TSFs and quite clearly didn’t want to do anything with it. Their solution was to give me even stronger painkillers and send me home. That was the only option I had, so that’s what I did, reluctantly, as I knew there was something more seriously wrong that pain caused by the frame! The same solution was given a couple of days later by the doctor left in charge by my surgeon as he was on holiday… just take more painkillers! (The ones he prescribed I almost blacked out with – horrid experience!).
On the return of my surgeon to the hospital, I requested an emergency appointment with him, as the pain was worse than ever, I was having to walk backwards everywhere and my foot was now purple. The shock on his face when I told him I’d been advised to take more painkillers and continue turning the struts! He immediately knew what was wrong. I had peroneal nerve damage, which in turn had given me foot drop. I was told that the damage may be permanent as I had continued turning the struts after the initial pain, and that the nerves may now be stretched beyond recovery. I was devastated. Provided with a strap to keep my foot held up at 90 degrees to encourage nerve repair, and told to continue with strut turning at half the speed – then hope for the best, I went home.
After a few weeks of no improvement- even after the strut turning had been finished for quite some time-, no sensation down the lower half of my leg, and not even the slightest movement in my toes, I lost hope. I came to the conclusion that the nerves weren’t going to recover and that I would need support to keep my leg in position forever. I would swing my entire leg forward from the hip to enable me to move forwards, and get about in a wheelchair for longer distances. I got on with my A-Level studies, trying to distract myself from what had happened to my leg.
Eventually, after 5 months of the frame being on my leg, it was removed and my leg was put into plaster cast for a month. This made getting about a little easier, as there were no pins to tear my skin as I moved, and my foot was held at a right angle by the cast… but it also meant I couldn’t test my ability to move my foot around as it was fixed in position.
Once the cast was removed, although a little stiff, I began to realise that some of the sensation in my foot had returned! I could even wiggle my toes a tiny bit! My nerves had begun to heal!!!! Over time, I regained movement in my foot and leg. Slowly but surely! Eventually I got full movement back in my leg and learned to walk properly again using both legs. What a relief! I was so happy! 😀 After a few months, I had a type of freedom I had not experienced since before my first surgery at 7 years old – I could walk about without the aid of crutches! Such a luxury!
I still haven’t got full sensation around my foot, but it doesn’t bother me. I am just thankful that I regained movement in my leg so I didn’t have to spend my life moving in reverse! 😉 The problem was sorted, the nerves repaired and the operation had been successful! My leg was totally straight! Amazing! What a success! 😀
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Life with Pseudoachondroplasia 