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

Hospitals & A Bad CRPS Flare

Hello!

It's been an eventful few weeks since I last posted here on my blog and you may have noticed that I mentioned on my Facebook page that my knee has been playing up lately, causing me quite a bit of pain and discomfort. Despite giving it plenty of rest and keeping it elevated as much as I possibly could, it didn't seem to improve any. In fact, it probably got worse if anything.

So after feeling pretty miserable all weekend it was off to the doctors surgery on the Monday morning to see my GP. We are pretty fortunate when it comes to our doctors surgery as they'll always do their best to fit you in as soon as they possibly can and last Monday was no exception. They managed to fit me in that morning roughly just an hour and a half after Mum called that morning. That's almost unheard of in today's society!

So after a shorter than usual tutoring session that morning, my Mum and I made our way across town to the surgery listening to the radio as we went.  Listening to the radio is by far one of my favourite past times and is great when going to a medical appointment as it helps divert my mind from worrying about it. After attending so many hospital appointments throughout the years, you'd think it wouldn't bother me too much, but for whatever reason I still get quite worked up about going for one.

Anyway, we arrived in the surgery car park just as they were playing the new ELO song which actually reminded me a little of another song. We were a little early so we sat in the car for a further ten minutes or so, which was much better than sitting in a waiting room, whilst I sat there deliberating what song it reminded me of. Then it hit me! It sounded like Golden Slumbers by The Beatles (my favourite band-in case you didn't know!) I quickly pulled out my iPod and started playing Golden Slumbers to compare the two songs. My poor Mum must get sick and tired of me having mad, geeky moments about music-she has the patience of a saint to listen to me rambling on all day long! But in all seriousness, go look up the two songs and have a listen! I mean it might just be me, but that's exactly what it reminded me of. Oops, I've just realised that I went off track enthusing about music (again!) Sorry folks!

Inside the surgery we spent a further twenty minutes or so waiting to be seen as it was extremely busy and they were running a little late. There really wasn't a need to complain though, as these things happen and they were good enough to actually fit me in at the last minute. After twenty minutes of watching I don't know how many different faces come and go and for me, counting the faded outlines of squares on the carpet (the things you do to past time), my name was finally called.

After explaining to the doctor what was going on with my knee, he gave it an examination, asking me questions about my most recent visit to hospital and what motions they used when examining my knee as that was really when my knee began flaring up. Apparently, the motion they used in hospital, which almost looked like they were popping my knee out of place and back in again, was actually to test the ligaments that had been created during my knee surgery back in 2011. I was told to rest my leg just like I had been doing and was prescribed yet more pain killers.

By Wednesday, my pain levels had grown worse and I spent the day in bed and for a little while in the afternoon curled up on the sofa feeling absolutely miserable. This was probably the worse my pain had been for a while. It was at the point that it had me in tears so that said a lot. My Mum decided to get in contact with the hospital and managed to get in contact with my pain management consultant's secretary who arranged for me to see both my pain management consultant and my othopedic consultant the following day which we were so grateful for them arranging.

So the next morning it was a 6:30am rise for us in order to get there in time. Quickly, we ate a spot of breakfast, got dressed and were out of the door before we knew it. On route to hospital, we picked up my Grandparents and hit the motorway in the morning rush. Fortunately, we managed to make it in time for my appointment.

After finding out where exactly to go for my appointment, (no one seems to know where exactly anything is in the new hospital) we were then told by a receptionist that my consultants had been called to theatre and they had no idea how long they'd be. Mum and I decided that we'd go get a coffee from the hospital coffee shop when we bumped into my orthopedic consultant on route. It turns out that he hadn't been called to theatre afterall, so we followed him to the plaster room where he had a look at my knee and decided to send me for an X-ray. It had been a good two or three years since I last had one actually. We were sent through what was like a secret corridor which led to X-ray department and let the receptionist know that I was there. After a fairly short wait, I was escorted through to the X-Ray room by a student radiographer who said that I'd been the most stylish person to step through their doors that week if not ever. Yes, even on a hospital visit, I still manage to wear one of my hats and a pair of Dr Marten boots because let's face it; it just wouldn't be me without them! But anyway, it was a nice compliment!

The radiographers who  took care of me that day were extremely lovely which makes a  huge difference! Some of my last X-rays were taken at an adult's hospitals and they barely uttered a single word to me and didn't even bothered to crack a smile-is it really that much to ask?! I mean, I was only about 13 or 14 at the time!

After being made to bend my knee in a variety of awkward positions, standing as still as I possibly could, the radiographers were satisfied with the images and sent me back through to the plaster room to find my pain management consultant dressed in his blue theatre gowns. He had to take a quick phone call, so my orthopedic consultant had a look at my X-Rays which thankfully looked normal. Although when it comes to my leg "normal"  is completely different to the average person's leg.

The long and the short of it was that last time I saw my consultant, which was around a month or so ago, whilst he was examining my knee, my fibula may have knocked against one of my nerves and upset things after it being moved around as much. There isn't much holding my knee together meaning that everything is kind of floating around, hence why my fibula could have hit against one of the nerves. There's isn't anything that they can really do to fix this so he suggested that I keep my leg well rested and that I wear a splint as much as I can over the next few weeks to keep things secure. So as one of his fellows ordered the splint, he popped out to go collect it.

During this time, my pain management consultant returned and asked me about what had happened over the past few weeks with my knee. I explained the situation to him and he also suggested me wearing splint on my knee. So everyone had a wee laugh about how two great minds think alike when my other consultant returned. I had to sit on one of the hospital beds as they fitted the splint which is extremely heavy and makes me feel like a robot, but I'll ride the storm and put up with it in hope that it'll help. Since I was there my pain management consultant also gave me a course of acupuncture in hope that it would help with my pain. Obviously, I wasn't able to see what he was doing as I had to lie on my side, but apparently my consultant used a lot more needles than he'd previously used when I had acupuncture.

So I was eventually sent home to rest my knee and to try out the knee splint for the next few weeks. I am most definitely not a fan of it as it's so heavy, however Ive got to do what I've got to do.

Anyway, I shall go for now but until next time I send you all lots of love and best wishes!

-The Hat Hippie xx

A Message to All Those "Professionals" Out There!

Hi Out There!

 

My apologies for being so quiet around here during the past few weeks, so much happens and you sort of loose track of time and then realise "oh! I haven't updated my blog in a while". These things happens I suppose but hopefully I'll have plenty more posts in the near future to make up for the quiet period-I'll give it my best shot anyway!

Anyway, today's post is a little bit of rant which I apologise for in advance. However, it's good to vent your frustration somewhere and hopefully if I do it here on my blog, the right eyes will read it and somewhere down the line it'll contribute to making things easier for someone else in a similar situation to myself. One can only hope it will have a positive impact at some point but in the meantime I'll use this platform for my own benefit. So here it goes.......

Because of my health I have had ALOT of "professionals" involved in my life ever since I was little. If I'm being completely honest with you; I absolutely hate it! When I was younger it didn't bother me too much, I just got on with it, attended the medical appointments and I suppose didn't think too much more about it. Now is unfortunately, a different story. I suppose having attended so many meetings and medical appointments over the years eventually takes it's toll.

I'm a little sick and tired of listening to the bright ideas that "professionals" who barely know me think are the right way forward for me. Well, I'm sorry but they're not! Not everyone is the same and just because something works for one person doesn't mean it'll be the right thing for another! I'm sure these "professionals" are used to walking into a room and repeating the same old script that they say to everyone they meet each and every day. What they always fail to remember is that they're speaking to someone with feelings and hearing them talk about me and my life in a particular way is pretty painful sometimes. They make you look at yourself in a completely different light and make your life seem alien in many respects. Quite often after the many appointments I attend due to my health, I get home and end up in floods of tears after hearing what was said to me which in turn makes my pain levels worse as my nervous system doesn't react well to stress and upset.

When I was younger I'd walk into a room full of medical professionals who would talk in what often felt like a foreign language. Making decisions about my treatment wasn't as much of a concern to me back then however, as you grow older you're suddenly flung in the deep end and Doctors want you to make the decisions. I often scroll through Facebook and see other people of my age discussing their worries and talking about the decisions they have to make regarding school/college which of course are important and have a major impact in the life. However, if I'm being completely honest I often envy their stress and concerns and wish I was making their decisions instead of decisions regarding the likes of medications and what steps to take next in my treatment. In many respects I feel like an old soul stuck in a teen's body, I struggle to relate to people of my age which might sound a little odd. Growing up so quickly at such a young age and trying to explain the emotions and how it affects you as person to people is difficult. One minute you're wanted to sit in a meeting and discuss extremely personal subjects with a bunch of strangers and then the next minute another "professional" thinks you're just like any other teenager and treat you as if you're clueless which REALLY irritates me! Like I said, I have nothing against others of my age but I find it difficult to be someone I'm not. At this point in my life I've been through a lot, experienced a lot of things that very few of my age already have and yet some "professionals" just presume I'm like any other teenager and should be acting and participating in things that others of my age do. Perhaps had they suggested some of their ideas a few years earlier it would have been different. But it's too late now I'm afraid, I can't be an "adult" and have to make mature decisions one minute and then put my "teenage" brain on the second I step out of the hospital. It unfortunately doesn't work that way; I'm either one way or the other. I am who I am and everything that I've been through has shaped the person I've become, I've matured and learned a lot over the past few years. I'm extremely proud of how much I achieved in the past year in particular and want to focus on making life as good as it possibly can be and more importantly standing up and speaking out about the issues that I alongside many other people are facing on a daily basis!

To be honest, I am now at the stage that I'm about to snap at the next "professional" who thinks they can suggest their useless ideas when A) I have already empathised of numerous occasions that my answer is 'NO!' and B) they haven't taken the time to really get to know me and see that I'm not the "typical" teenager. I am seriously considering handing them a piece of paper with the link to this post and telling them to go read it. Perhaps it would make them stop and think? Perhaps they might realise that before making presumptions they need to instead, look at the situation and at each individual as a person. 

As you'll now probably have gathered I am sick and tired of people trying to class me as something I'm not and just presuming that because something suits one person it'll suit and appeal to everyone. Well hello!-It won't! We are all unique (in a good way of course!) and when someone says 'NO', it should taken as 'NO' providing that the outcome's not going to cause harm to anyone. I hope that one day the point I'm trying to make will be taken seriously and perhaps those who need to take notice will do just that. I'm just one person sitting here in my room, on my laptop writing about my frustrations here on this minute space on the internet, if I'm lucky a few people might even sit down and read it. Through just even one person stumbling across this, I sincerely hope I can change perceptions and perhaps even gain the support of others to spread this message further. I can only imagine that I'm not the only person out there who feels this way and hope that through what I write I can find those that feel the same way and together, I hope we can get the message out there!

 

On that thought, I shall leave you with that thought and bid you farewell for now!

 

Sending you lots of love, peace and best wishes,

 

Rob xx

My Love for the Story of Peter Pan

Today, I thought I'd write about something that has held a special place in my heart ever since I was a little girl. I'm sure there is something out there that makes each of you feel the exact same way, something that puts a smile on your face and brings back all of those happy memories. For me, the story of Peter Pan the boy who never grew up does just that! The well-known classic has always captivated me and taken me away to the wonderful world of Neverland-it's simply magical!
As I've probably mentioned in one of my previous blog posts I have spent a lot of time in London over the years at Great Ormond Street Children's Hospital having treatment for the physical disability I was born with. Some of you may know that J.M. Barrie gifted the rights of his book Peter Pan & Wendy to GOSH (Great Ormond Street Hospital). This meant that all of royalties whether they came from book sales or a stage production of Peter Pan & Wendy would go straight to the hospital's funds and help make a big difference for each of the children under the care of GOSH. I really admire that J.M. Barrie for doing this, as his kind gesture has helped make such a positive impact. Whilst his story has brought so much joy to so many of us; it has also played a big part in Great Ormond Street Hospital's history and helped make it the special place that it is today.
Hospitals are not the most pleasant of places for anyone to find themselves in but as a child it can be extremely daunting. However, in this instance there was always a little bit of magic around every corner at GOSH thanks to the help of J.M. Barrie and of course the beloved character he created, Peter Pan. Inside GOSH there are numerous Peter Pan memorials hidden around the hospital. These small touches always helped make my hospital experience and I'm sure many other's who have also been under the care of GOSH a little easier to endure.
At the hospital's main entrance there was a little patch of greenery on the left hand side just before you reach the main doors. Hidden amongst the greenery is a life-size statue of Peter Pan and a miniature statue of his trusty pixie friend Tinkerbell, resting on the tip of his finger. If you didn't pay much attention and walked straight ahead; it could easily have been missed. Whenever we walked past the statue, despite how rubbish I sometimes felt during my time spent in hospital, it never failed to put a smile on my face and cheer me up.
Up until a few years ago I never knew that like me, J.M. Barrie was actually born here in Scotland. I discovered this in primary school when my class studied Scotland as our class topic. As a part of our topic we were each asked by our teacher to produce a personal project on a famous Scot of our choice as homework assignment.
I then found myself in great deliberation on who exactly I should choose to conduct research on. Me being my usual self didn't want to pick one of the popular Scots that a lot of pupils in my class had already opted for. With this in mind I spent hours searching the internet browsing through lists of famous Scots in hope that inspiration might struck. Eventually, I spotted J.M. Barrie's name hidden amongst one of the lists and was surprised to discover he was actually born here in Scotland. So in the end it only seemed fitting to choose to write my project on J.M.Barrie's life as his work has had such a major impact on my life.
As a young child I remember being absolutely mesmerised with the 1953 Walt Disney production of Peter Pan. It brings out the child in each and every one of us! Just like each of the Disney films we all know and love; Peter Pan is a classic. It's timeless and I'm pretty sure will be loved just as much in coming years as it is today!

What is it Like to Suffer Complex Regional Pain Syndrome?

Almost an exact year to date, after months of enduring countless medical appointments with no answers I was finally diagnosed with a condition named Complex Regional Pain Syndrome. The condition stemmed from pioneering knee surgery that I had in 2011. As Complex Regional Pain Syndrome isn't a widely recognised condition (I had never heard of it until I was diagnosed last year) I thought I'd write about what it's like to live with the condition.

Having Complex Regional Pain Syndrome means that basically I suffer constant pain in the affected areas of my body. From what I've heard CRPS can be caused by a whole host of things, mine has stemmed from the knee surgery I had back in 2011 but we cannot pinpoint the exact reason why I suffer from it. Due to the personal experiences I've had whilst suffering from the condition I have noticed that my pain flares are triggered by things such as emotion, stress and even cold weather.

It's difficult to describe what exactly the pain feels like; I haven't ever experienced pain like it before. The only way I could begin to describe it is that the pain feels like burning but I must emphasize that it's much more intense than "just burning". I mean this is the kind of pain that keeps you awake at night, it makes you feel sick and downright miserable.

I also experience pain in my hand and foot as over a period of time it has spread from my knee to other parts of my body. When the pain flares in my foot my heel turns a bright shade of red and stings whenever it touches or rubs against anything. It reminds me of having a carpet burn but on a much worse scale. On some occasions it swells making it both difficult and uncomfortable to wear a shoe on my right foot.

Apart from experiencing gruelling and debilitating pain I suffer a number of other symptoms that go alongside CRPS. My hand for example is extremely painful whenever I attempt to use it, particularly when it involves fine motor activity. Whenever I use my hand to do something or if I feel stressed, upset or even excited it goes into an uncontrollable tremor which is not much fun at all! I usually wear a splint in order to support my hand, keep it steady and minimise the tremor.

Complex Regional Pain Syndrome also affects my nails. I've experienced that the growth in my nails takes much longer than it used to they have also cracked for no apparent reason. When reading about CRPS it's apparent that nails are often affected leaving sufferers experiencing similar problems to the ones I have. My sleeping patterns are also affected drastically by the pain. It takes me forever to fall asleep at night due, meaning that I spend the following day yawning and feeling pretty tired.

I have quite a large scar spanning from just underneath my knee and doesn't stop till half way up my thigh (it's a similar shape to Harry Potter's lightning bolt scar except bigger) the skin round my scar feels numb but at the same time feels extremely sensitive as does the rest of my leg. I hate when anything rubs against both my knee and foot as it makes me jump due to it's sensitivity.

There has been times (mostly in the winter months) when my pain has gotten so bad that I had to go and lie in my bed for hours on end in complete darkness. I felt very sick at times and didn't feel much like eating which also caused problems because when I don't eat I cannot take pain relief to help ease the pain in the first place. Those winter's days were like nightmares! Whilst everyone is excited for winter hoping that it might snow I spend my time dreading it as I know the cold weather makes me feel so miserable! I know that if I decided to venture out into the snow that I should prepare to spend the following day in bed.

At the current moment there doesn't seem to be an exact cure for CRPS, I rely on coping mechanisms in order to manage my pain. Throughout the past few years I've spent a lot of time going back and forth to countless hospital appointments not just looking for answers but to also attend pain management clinics. At pain management clinics my consultant looked at a range of different treatments to help ease my pain. Some have had better results than others but for various reasons I felt that they weren't the right treatments for me due to side effects that went hand in hand with them. Using coping mechanisms and taking basic pain reliefs is the best way that I can manage my pain at this moment in time.

As much as my health frustrates me I always try to remain positive despite how difficult that can be. Hopefully some of what I write here on this blog will reach someone out there going through similar experiences to me. I think I  mentioned previously that there isn't a lot out there for people like myself. There are articles on the internet written by experts about my condition and others similar but there isn't much material written from the point of view of a person who lives with it everyday. Yes, a piece written by a professional is great; it's informative, looks at the facts, research and statistics that have been compiled together. I however, want to compose writing that is both relatable and appealing to someone of my age group.