Archive | April, 2012

Taylor Spatial Frame Problems…

30 Apr

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! 😀




Hello Taylor Spatial Frame No. 1!

30 Apr

In 2008, I had my first Taylor Spatial Frame (TSF) put on my left leg.  The purpose of this surgery was to straighten my leg in three planes.  I would end up with a leg that looked straight from the front and the side, and the lower bones would be aligned correctly with my knee (so it didn’t look like my leg was bending backwards). Exciting stuff!

TSFs work by positioning lengths of wire and thicker rods into the bone, then attaching them to an external frame.  The frame is adjusted daily using the ‘struts’ with incremental turns, which, then adjusts the bone positioning around the break.  Once the position is confirmed to be correct (by x-ray), the limb remains in the frame until the bone has healed and strengthened enough for it to be removed.  A clever piece of kit!

Having had a few years off from surgery, I was a little daunted by the prospect of surgery – especially as it was a type I hadn’t experienced before – a frame around my leg, with pins and rods going through my flesh and bone. Eek!  However, off I went to have the frame fitted.  I had previously been told to expect to be in hospital for around a week for the initial recovery and then I’d be allowed home for the remaining time whilst the bone was adjusted and then healed. Didn’t sound too bad, considering they were essentially drilling metal wires and pins into my leg!

Once the surgery had been done, and I finally woke up enough from the anaesthetic (!), I plucked up the courage to look at my newly kebabed leg.  There it was, with medical gauze around the pinsites (where the pins enter or leave the skin) covered in dried blood. Not pleasant, but not as gory as I had expected!  After a day or two, the TSF nurse (Mary) came to replace the gauze around the pins, and to teach Mum and I how to clean them and how to avoid the dreaded pin-site infection.  I can’t say it didn’t hurt, it did. The solution used to clean the wound, with the dragging sensation caused by the medical gauze used to clean the skin really did sting. I wasn’t impressed – and I was going to have to do this once a week for between 3 and 6 months?! This was where reality set in… I had the frame now, I HAD to do this, but I really didn’t want to! Too Late! So on we went, learning about pin-site care.  I was also taught on that same day about how to adjust the struts.  From x-rays, a computer generates a ‘program’ of turns, which you follow according to how many millimetres adjustment is required each day.  At the end of the program, your bone should then be in the desired position, at which point the turning stops and the waiting game for bone consolidation begins! The sensation of adjusting your bone with these struts is a difficult one to describe. It feels pressurised, tender, almost as though your leg is being stretched. Bizarre. It wasn’t painful though, as I had thought it might be… so, at this point in time, I was beginning to feel more reassured that it would all be okay. 🙂  After just 5 days, I was off home, with my strut turning program, medical gauze and cleaning solution, and painkillers in hand!

Other Operations and Hospital Adventures (that I can’t remember the order or years of!)

20 Apr

I had the ‘break your legs and let them set in a straighter position’ operation three times in total, but I have had other operations too.  The ligaments in my knee have been mashed to strengthen them and to prevent sideways movement in the joint. I’ve had pins put into my bones to strengthen the bones in the correct position. I’ve had a few ‘blue dye’ operations in my hip – but I don’t actually know what they were for! Something else was done to my hip too, and you may not believe it, but I genuinely haven’t got a clue what, or when it was done – all I know is that I have got two rather long scars along my left hip.  A hospital visit I do remember clearly though (but again, I’m not sure how old I was) was when I had a MRI scan.  Having to lay in a tube, staying very, very still, whilst things whirred around me – forming images of my neck.

The MRI scan was being done to determine how much the form of my neck had been affected by Pseudoachondroplasia.  It was obvious that I had (and still do have) a deep lumbar curve in my spine, which is a common finding in people with PSACH, but what I really wanted to know was if I was allowed to get back on a trampoline!  My parents had been told previously that trampolining could be dangerous for me, as one small fall could cause permanent neck damage if part of my spine was too near my nerves (I think that’s what the worry was anyway!).  Not being able to do many physical activities due to the daily pain, I was obviously keen to get back on a trampoline as it was something I could do with minimal pain, and something that I enjoyed! Luckily for me, the scan proved there wasn’t an issue with my spine and that I could trampoline as much as any other child! 🙂

I know I had many other hospital appointments when I was younger too, but the details of them are long gone from my memory! I do know that I didn’t really mind going to them though – the staff at Great Ormond Street Hospital and The Royal Free London were always lovely, and when I needed anaesthetic for operations, I was more than willing to be there! Oh that dazy feeling of drifting off! 🙂 The more recent operations and hospital appointments will have their own posts, as they will probably be quite lengthy, and I don’t think that’s quite how these blogs are supposed to work, are they?!


Leg Straightening… Take Two… And Three!

3 Apr

So, the first time I had both legs broken to straighten them, it had worked – for a few months, before my growth caused the deformity to return to my legs and I was back to square one again.  However, the decision that I made, along with my surgeon and parents, was to try again – maybe it would work this time.

This is going to be a very short post, as basically, the same things were done again (that I explained in the previous post).  Legs broken, legs in plaster, lots of time spent sitting down, plaster off, physio done and ta-dah! Straight legs. This time around though, it was a little more successful… Yes, the left leg soon became knock-kneed again, but the right one didn’t! It was almost totally straight! Hooray!

I don’t remember what the time scale was, but I know that I had the left leg operated on once more (third time lucky?!) in an attempt to straighten it.  I also had the ligaments in my knee ‘mashed’ to try and strengthen the joint and prevent my knee twisting in the wrong direction. I was definitely more wary about having surgery directly on my knee – I’m not sure why, but I was.  However, it did improve the situation a little, as the leg no longer looked as wonky, nor was the knee joint so loose.

So, three lots of leg-straightening surgery later, and I had one leg that was almost totally straight, and one that wasn’t really – but was a lot nearer than it was to begin with! Some might say that the surgery was a lot to go through when perfection wasn’t achieved as an end result, but I disagree. At least I can say we tried! It wasn’t the end of surgery for me though, but that’s all to come in other posts….

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