My Experiences of Frames & Leg Lengthening

I wanted to use my blog to write a lot about personal experiences and actually, when I think about it I haven't written very much about my time in London at Great Ormond Street Hospital. So today I thought I'd make a start and tell you a bit about the leg lengthening surgery I underwent and the frame that they put on my leg. This will be followed at a later date with posts on staying in hospital and my experiences of London as city during my frequent trips to hospital. I also want to create an open door policy for anyone who is undergoing leg lengthening, perhaps going to stay in hospital for treatment etc. to ask me questions which I'll try my best to answer. So if you'd like to ask me anything feel free; I want to help put as many people's minds at ease as I possibly can. No question is too ridiculous so please don't feel embarrassed either-trust me I've had to ask my consultants questions that I thought were silly in past, but knowing the answer helped me feel better about the situation!

Well I was born with my right leg shorter than the left and the long and the short of it was that I ended up under the care of Great Ormond Street Hospital in London. I underwent treatment when I was just a year old and just a few years later at around four years old, I had my first leg lengthening operation. So I was pretty young but I believe I coped remarkably well.

Basically, what happened in the initial operation was (please excuse how gruesome this might sound; it makes me squirm too although, it didn't feel as bad as it sounds-I promise) that my consultant broke one of my bones either the tibia or fibula (can't remember what one) in half and put a metal cage called an Ilizarov frame around my leg with metal pins attached to it which went through my bone. After the initial operation we had to use a pair of spanners every day (yes, spanners that you'd find in a toolbox) to twist the rods on the Ilizarov frame which were connected to the pins in my leg. What this did was stretch my bone in order to achieve the required growth over a period of a few months. Although, taking a pair of spanners with us to the airport on our fortnightly trips to London was fun and games. Every time without fail we were stopped at the security check (whatever you call it!) and questioned about why we needed a pair of spanners. Try explaining the strange contraption on my leg and the spanners to go along with it was certainly interesting-it's a wonder how we managed to persuade them to be honest!

A few weeks after the initial operation I had to undergo a follow up operation in order to insert a thicker pin through my other bone and attach it to the frame. After a seven month period I underwent a third and final operation to have the Ilizarov frame removed from my leg and in comparison to the seven hour operation to put it on in the first place; it only took around twenty minutes to remove which is quite unbelievable!

Me and my physiotherapist at GOSH

Following the first lot of leg lengthening, the required amount of growth in my leg was successfully achieved and for a good five or six years afterwards I would visit GOSH every six months for check ups. However, as time went on I began to grow and the difference in my leg length became more problematic as expected. So at ten years old I had the leg lengthening treatment all over again; except this time they used a more modern and up to date contraction called a 'Taylor Spatial' frame. Again, it was the same surgical procedure however the difference was that I was quite a bit older, the orthopaedic ward was in the newer part of the hospital and I'd forgotten what exactly to expect as I was only just a little girl last time round; so it was all pretty scary for me I must admit.

Fortunately, there was so many people in the hospital that helped put my mind at ease such as the doctors who explained things in a matter of fact way so I always knew exactly what the procedure involved, the nurses who did their best to make the experience as easy as possible, the play leader who sat down and explained things to me and always found a fun art activity to keep my mind off of any procedures I had done. And of course the other patients that I came across were also a great support to me; there was always something fun going on to take part in and they overall, they made everything seem not so bad. But I'll tell you more about the actual hospital experience in another post in the not so distant future.

Apart from having the actual surgery itself, there was a lot of work on my part to help make the treatment a success. Like I said earlier, we had to use the spanners every single day for a period of a couple of months to tweak the rods and in turn stretch the bone. I also, had to have my wounds cleaned on a regular basis which was an experience that I wasn't so keen on. Basically, my Mum had to remove the old dressings and clean round each pin site on my leg with antiseptic wipes which stung like mad and often made my cry. The new dressings were soaked in some sort of antibacterial solution which were put around the pin sites and secured with either a plastic clip or a rubber tube type thing. My Mum would clean my wounds for me as well as the district nurses who'd visit at least once a week to clean them, check for infection as well as providing us with more wound cleaning supplies. The nurses I had were great and I got on very well with them! I'd often put on a DVD usually something like Camp Rock or High School Musical as I was a part of the generation that were obsessed with those movies. Sometimes, I'd even get out my joke book and tell everyone a joke or two-bless them having to put up with those awful jokes! 

On a couple occasions my pin sites got infected and up until then I'd been too afraid to look at my wounds. I accidentally caught sight of one of the infected wounds one day and although, it wasn't particularly gory I got quite a fright. Following that incident, I put a towel above my leg in order to hide the frame when my wounds were being cleaned so I wouldn't catch another glimpse as it really freaked me out!

I also had regular sessions with my physiotherapist which started off in hospital to get me up and moving although, I wanted out of bed the day following surgery. There was no physiotherapists as it was a Saturday so with the help of my parents and the nurses we had to use a banana board to transfer me to my wheelchair without bending my leg. For the two weeks I spent in hospital, I attended regular gym sessions with my physio to get me moving which were actually quite fun-more on that in a future post though! I then carried out the exercise by myself at home and in regular sessions with my physiotherapist here in Scotland.

Riding my tyre swing with a frame on my leg

You'd think from the appearance of the frames that it would restrict what I was able to do however, I soon realised that this was not the case. The possibilities were endless! I was able to ride my bike and was even able to play on the tyre swing in our old garden! So it certainly didn't restrict me; in fact it probably made me all the more determined. 

Was it painful? Well, there was times when it would cause me pain and discomfort particularly just after surgery. I suppose my bone had been broken after all. However, the doctors kept me well stocked up on pain relief and as time went on I required less and less of it. I'd probably say the worst part for me was having my wounds cleaned but even that I managed to get through by distracting myself with other things.

Of course no one wants to have surgery but I choose to look at what I've been through as a positive thing and although it didn't quite go to plan and I was unable to have a third leg lengthening due to problems with my knee resulting in me having quite a difference in length between both legs; I had some pretty great experiences in the process! I've visited some pretty cool places and met some wonderful people so really, it could have been a lot worse!

I've tried to keep this post to a minimum as there's so much I could write about. However, if you are about to go through this sort of surgery, are going through it or have went through it and would like to ask a question or chat about it, then please feel free to get in touch with me via the contact page above! I'd love to hear from you and would be delighted if I can help in anyway. I'm thinking I might also make a YouTube video on this subject as it'll reach another audience and might help at least one person out there! Thank-you so much for reading, I'll be back again very soon with another new post so make sure to pop back and see what's happening!

Love & Peace,

The Hat Hippie xx