At the time of this going to print I have been wearing my ilizarov frame for 4 months with approximately 8 months left, although if I have learned anything during this process it’s that time frames are fluid and amenable and not something to place all your hopes and recovery-dreams on. I’m also learning, as I go, what it’s like to live with an ilizarov frame and how best to accommodate it – how best to adapt my life around it – for me. So – disclaimer time – I’m no expert; I’m just figuring it out, like everyone else.
The first time I saw an ilizarov frame was when a model prototype was plonked onto my lap, mere hours after arriving at St Peter’s hospital in Chertsey, Surrey, and mere hours before my ilizarov surgery was due to take place. Up until two days beforehand I believed I would be having a standard plates and bolts surgery to fix my badly broken leg – one of multiple injuries following my 150 metre fall down the side of a mountain while trekking in Nepal fifteen days earlier on 23rd November 2017. In medical jargon, I had a Grade 1 compound comminuted fracture of distal end of left tibia and fibula, meaning (in layman’s terms) that I had completely shattered both bones above my left ankle and the skin had been ripped open as a consequence. They didn’t know – and possibly would never know – if my bone was compromised from the break to my skin, but what was clear was the severity of my injury and the sheer amount of bone loss; it was far too complex for standard surgery and I was at risk of losing my limb.
Ilizarov frames are a type of external fixator used to treat complex or open bone fractures, correct angular deformity in the leg, correct leg-length differences or non-unions (when a broken bone fails to heal) and as a limb-saving technique. They are named after Gavriil Abramovich Ilizarov; the orthopaedic surgeon from Russia (then Soviet Union) who pioneered the technique in the 1950s. The structure of the frame is comprised of steel rings connected to one another by threaded rods and nuts, and connected to the bone using steel pins. The number of rings and pins used, and their position, are dependent on the injury; my frame is made up of 3 full metal rings from just below my knee down to my ankle, plus a 4th “horseshoe” ring at my heel, all connected to my leg bone with 22 metal pins. The design of the ilizarov frame immobilises and relieves stress from the fracture site, while allowing weight-bearing of the limb; this encourages bone growth and healing. The amount of weight-bearing permitted also varies depending on the injury; I was told I need to weight-bear fully, which means I’m ideally supposed to walk without crutches in the end.
The surgery to fit my ilizarov frame was on 8th December 2017 under general anaesthetic. As soon as I came round I was informed the surgery went really well and it wasn’t until 6 days later, when I was getting ready to go home, that my post-op CT scan revealed my ankle joint had fallen at the last moment in surgery. So I had a second surgery on 15th December, a week after the first, to correct my ankle joint, however it then became apparent my ankle joint was weaker than they had anticipated and would be another hurdle to my recovery; the need to fuse my ankle at a later stage, if not strong enough following the break, was becoming a strong possibility.
Then, on 24th January 2018, almost 7 weeks after my first surgery, I had an osteotomy just below my left knee. An osteotomy is where they surgically cut your bone to allow for realignment/growth of the bone. Once the bone has been broken the fractured bone would naturally begin to heal back together, however during this time the ilizarov frame is adjusted by me turning the nuts in the frame 4 times a day, which lowers one of the metal rings by a total of one millimetre per day. So, with the metal pins attached to the leg bone, this slowly lowers the surgically fractured bone, filling the gap in my ankle and creating a new gap above. By creating a gap, this allows bone to grow in its place (incredibly, something discovered by accident), therefore lengthening the limb.
I had been told I had approximately 3-4cm of missing bone above my ankle and approximately a 1cm leg-length discrepancy to my right. I began turning the nuts on my frame on 29th January 2018 and approximately 2 months later, during which time I returned to the outpatients unit multiple times for x-ray updates on my progress and had random days of rest from turning the nuts when the aching became too painful, I eventually filled the gap in my ankle and lengthened my left leg to match my right. The gap I created just below my knee by doing so was 5cm and, on 3rd April 2018, I was told I could cease turning the nuts on my frame. With an estimated 1cm of bone growth per month I am looking at approximately 5 months of waiting, with ilizarov frame still on, for the bone to grow while we also hope that my leg bone heals into my ankle.
It’s important to stress that every break of the bone is different, every ilizrov frame different, and every recovery process different. On top of that, every person is different. So, while I think it is invaluable to talk with other people going through an ilizarov recovery, it’s impossible and futile to compare your process to anyone else’s; focus on your own personal recovery instead of what other people can do that you can’t, or where they are at but you are not. Therefore I don’t claim to have all the answers or arrogantly assume that what has worked for me will work for you; that is for you to experiment with and figure out. All I can do is share what I have discovered and maybe – just maybe – it will help you in the same way that the advice and stories of others has helped me.
Firstly, I have to be honest and say that the pain following the surgery, for me, was unreal. I was informed beforehand that it is the second most painful surgery a person can have and, while I was high on morphine the first night following my surgery, by the second night I was in a lot of pain and I could barely move. I felt as though I could actually feel the metal pins going into my heel in a searing pain. In addition, it’s a shock to the system how reduced your mobility becomes and how long it takes to get that back; simple things like moving your leg can cause agony and suddenly you can’t support yourself in the way you could before. I also had an osteotomy, which was painful in itself, but then add to that the daily lowering of your leg bone and you’re gifted with additional aching while the ever-increasing gap between your bones causes out of the blue shooting pains. One of the most difficult things about all of this is the disruption to your recovery from multiple surgeries; you begin to make progress with your mobility and your pain levels and then following another surgery that goes backwards again. So really the whole process is a pain party, and you’re the guest who didn’t want to go in the first place.
Secondly, you will likely develop a love/hate relationship with your frame. I became more and more amazed by what could be achieved using the frame as time went on and fascinated by orthopaedics in general, especially while I was lengthening my leg bone to fill the gap in my ankle and the signs of bone growing in its place began to show. Respect, awe and gratitude are feelings you will become used to. But – and this is a big but – you will also passionately hate it. Not only because of the pain but because it is big and bulky and heavy, because it prevents you sitting, standing, sleeping, dressing, and bathing normally. You will get frustrated by it over and over again, wanting to tear it from your limb and throw it at Mr Ilizarov. And that’s okay. Just remember it is there to save your limb, or to get your limb into the best physical shape it can be. It IS worth it.
– Pin Site Clean
A couple of days after your ilizarov frame surgery you will have a pin-site clean carried out by the nurses and then it will be your responsibility to perform this clean once a week once you return home. Upon being discharged from hospital I was given a bottle of Chlorhexidine 0.5% disinfectant, gauze, non-adhesive sponge dressing and white ilizarov clips, most of which I then was able to get on prescription from my GP to some variation, (except the ilizarov clips); I have detailed the exact items I have been able to obtain from my GP below*, in case it is of any help. Your frame and pin sites are supposed to remain dry at all times other than just before your pin site clean when you are allowed to get your limb wet, so I usually shower without soap prior to the pin site clean.
Because some of my pins are in hard-to-reach areas I ask my mum or my sister to help me, both of us making sure we clean our hands thoroughly beforehand (even using some anti-bacteria hand gel to be safe). After lifting the ilizarov clips and removing the now-soggy sponges from the pin sites, we soak the gauze in the disinfectant, drain them of any excess liquid and then wrap them around the pin sites. I have had nurses clean my pin sites one at a time by wiping one with the wet gauze then applying a fresh piece of non-adhesive sponge (which you have to cut yourself) and lowering the ilizarov clip before moving to the next. However another nurse applied wet gauze to all the pin sites first before removing them in the same order, then applying fresh sponge and lowering the clip to each as she went; I prefer the latter as it soothes my pin sites more by leaving the disinfectant-soaked gauze in place for a while, but it is personal preference.
As a side note, following my accident I found that the skin on my foot – after having swollen and then gone back to size – became snake-like and eventually peeled to an extreme extent; I shed so many layers of skin I was left with a baby-soft foot afterwards. I found that E45 cream really helped with the roughness and peeling of my foot and also with the dry skin on my leg; you just have to be really careful to avoid the pin sites.
*[Disinfectant: 500ml Hibi Liquid Hnad Rub+ 0.5% Soln; Sponge: Biatain Non-Adhesive Foam Dressing; Gauze: Latex-Free Gauze Swabs 10cm x 10cm 8ply]
As mentioned above, you can only get your ilizarov limb wet prior to a pin site clean, which – alongside the physical limitations imposed by having a metal frame attached to a body part – makes it difficult to wash thoroughly. You can shower at other times if your ilizarov limb is covered up and doesn’t get into contact with the water, so I tried covering my leg with a bin liner; struggling to balance on one leg while showering, plus negotiating getting in and out of the shower with a slippery surface and a slippery bin liner, made it harder than it sounds. I therefore gave up on this and have chosen to only shower once a week before the pin site clean, but I would still recommend having someone there to help you get in and out of the shower. I have resorted to flannel washes as an everyday clean while sitting on a stool beside a water-filled bath, being careful to avoid my pin sites – it is imperative for no soaps or creams to come into contact with the skin around your pins.
I am fortunate enough to be able to have a bath as my mobility has increased and pain in my leg has decreased. I bought an adjustable stool (pictured above) from Amazon so I place this at the same height as the bath, sit on the stool and swing my right leg (non-ilizarov) into the bath first. I then hold onto the sides and lower my body in (with my new-found upper body strength since having to rely on my arms for movement), ilizarov leg stuck out, and finally rest my ilizarov leg onto the stool once my bum is firmly wedged in the bath. Once finished I drain the bath water first, dry down the sides of the bath and dry myself off thoroughly (especially around the arms) before slowly and carefully lifting myself back out again.
Sleeping can be a bit of a nightmare (no pun intended). I used to sleep in the fetal position but with the frame on my leg I am forced to predominantly sleep on my back and, in order to reduce the swelling, it also helps to keep the limb elevated; this is especially imperative post-surgery or when the pain is particularly bad. In hospital they would stack pillows one on top of the other for you to elevate your limb on, but these were unstable and also forced my other leg to be much lower than my injured one, adding to the imbalance in my hips and my ultimate discomfort. So I purchased a giant slanted padded cushion purchased from Amazon, which I would highly recommend as it allows BOTH your legs to be elevated while feeling more stable and sturdy. After a few months I felt able to sleep some nights without this cushion and instead lay my leg out on a normal pillow – any flat, solid surface is quite uncomfortable for the cylinder shape of the frame, so you need something underneath it that it can sink into.
Talking about aiding your sleep, I am someone who wees a lot (relevant, I promise.) I found it annoying enough waking up 3 times a night to go to the toilet before the accident, but afterwards – when my mobility was low and my pain was high – it became an impossible nuisance. So I purchased a unisex urinal, which I now use whenever I wake up in the middle of the night needing the toilet. Depending on the amount of urine I can get 2-3 uses out of the pot, which has a funnel-type attachment for females and a lid attached to close it after use, and it really saves a lot of pain and energy for me, especially at the early stages post-surgery when it is difficult to move even when you’re not half asleep. We are a reserved society, made to feel embarrassed or ashamed about perfectly natural bodily functions, but for me – who has little shame with regards to such things anyway – none of that matters when it makes my life more bearable. I purchased mine from Boots but you can find them from many online stores including Amazon.
Despite needing to be fully weight-bearing and ideally walking without crutches, I have been on crutches for 4 months now and the main problem with crutches (other than them having a mind of their own most of the time) is that it’s almost impossible to carry anything with you while you are walking. I therefore purchased a cup holder from Amazon that I attached to one of my crutches and use to carry cans or bottles of drink (but it sadly doesn’t help with hot drinks!) Having a backpack is also crucial as you can then carry many things from room to room with ease. This doesn’t, however, work with plates of food. For this, I have mastered the art of moving things along the floor; once I have placed it on the floor in front of me I either push it ahead of me with my crutches to then catch up with it and repeat the same step, or place it as far in front of me as I can with my hands to then walk ahead of it, turn around and pick it up to repeat the same step. It’s a slow process but it helps with the independence!
Having an ilizarov frame fitted also impacts on the more superficial and clothes become a bit of a textile disaster. My ilizarov frame is from the heel of my foot right up to just below my knee so I can’t wear jeans and boots (my favourite combination) or put on any slim fitting bottoms (and by this I mean anything that isn’t WIDE fit). And because of the number of metal pins (22 for me) they usually catch on any clothing I’m wearing while walking, or simply putting on. Floor length loose skirts and dresses go over the frame and cover up the frame but they can limit walking when they pull tight against your frame, so be careful. Pencil skirts sit just above the frame but are more difficult when you need to keep your leg elevated, while loose shorts have been useful for around the house. I paid a seamstress to crop a pair of jeans and add a zip in place of the outside seam on my ilizarov leg so I could pull them up over my frame when unzipped and then zip them into place. I did the same thing with a pair of cropped joggers; it helped to have comfortable, slim fitting clothes and to feel a bit more like “me”. Ultimately it might take time and experimentation for you to find what works for your frame and suits your style, but you may have to accept that fashion will sadly come second.
Shoes were an adventure for me because of the horseshoe ring going into my heel, which only allowed for backless shoes. My lifesavers were backless Ugg slippers (see article cover photo); not cheap at £85 but they were perfect for around the house and I even wore them out if I wasn’t walking on too many roads; they are soft, warm and sturdy. I also purchased a pair of backless espadrilles from New Look for £15 (photos below), but the cheapest option is to buy a couple of pairs of basic plimsolls from Primark at £3 a pop and then cut out the heel where the pins are.
There are little extra things you can do to improve the impact and appearance of your frame. The frame itself can easily catch onto material because of the pins, as well as react to temperatures; if the weather is freezing your frame will become cold, and heat up if it is hot. You may find a frame cover is useful for dealing with both of these issues, plus it helped me embrace my frame by making a Christmas-themed cover when I first came out of hospital in December. Covers made with Velcro to secure it down the middle – plus with drawstrings at each end to wrap it neatly around and underneath the frame – were the most ideal. I took measurements and sent them through to a seamstress friend.
If you have an ilizarov frame on your leg you may find your foot falls away from you as the strength and structure in your foot is not what it used to be; I have a stretchy bandage I wrap around my foot and then tie to the top ring of my frame, slightly pulling my foot towards me and holding it in place. I’ve also found my toes are more stuck together, less naturally separated, than my other foot; I grab toe separators used for painting toes and wedge this in for 20 minutes. When I remove it my toes at first remain oddly far apart (as there isn’t the same elasticity), but eventually they pull themselves back inwards but with more spacing than beforehand.
One of the hardest things with having an ilizarov frame fitted will be the limitation on your mobility and the impact that has on you physically. My advice is to do the physical exercise and activity that you can and, if needed, do them differently; they will keep you active, nimble, pain-free and aid your recovery. No doubt you will have been given a leaflet of the stretching exercises you should do every day and I didn’t realise how much they were helping until I stopped for a while and my knee seized up; they are basic but fundamental. I have also found that doing certain yoga poses helps provide variety and strength to my stretch exercises: the Standing Forward Bend, the Seated Forward Bend and the Double Leg Raise have been excellent for my knees and my back; the Chair Pose and the Bridge Pose are similar to the exercises in the leaflet but push you that bit further; the Half Spinal Twist and the Reclining Spinal Twist are good for my back and my hips; and the Boat Pose and the Shoulder Stand are great for my core and my knees. Please make sure you know your limitations before completing any of the above and either have been taught how to do the poses or feel confident you can follow the instructions.
I would recommend incorporating other forms of exercise where you can, even if adjusted to suit your injury. For example, I used to enjoy body pump classes so I added hand weights to the squat exercises and for body combat arm punches. I also used to cycle and really miss my bike, so I purchased a Mini Arm and Leg Pedal Exerciser; I was able to use this on my arms whenever I wanted, and carefully and slowly with my legs once I had recovered from surgery. Please note that while these exercises work for me and my ilizarov frame they won’t necessarily work for you and while it is important to push yourself during recovery it is also important not to cause yourself further injury. Ongoing physio, while wearing the frame and afterwards, will help you to establish your capabilities and limitations and are fundamental to your recovery, so arrange it via your hospital or GP as soon as you are discharged as there can be long waiting lists.
As soon as you have an ilizarov frame fitted you lose your physical freedom, capability and independence. I was trekking when I had my accident as part of a year and a half trip travelling the world, and before that I used to cycle into London; those are the big things I can no longer do and they alone are devastating in themselves. However there are also the everyday little things you once took for granted that you suddenly find yourself unable to do unaided, or at all, and you are hit by new ones every single day; being able to hop out of bed and run downstairs; washing your hair; going for a walk; preparing a meal; taking the car out for a spin; fumbling through your wardrobe and getting dressed; sitting cross-legged on the floor; buying items in a shop without the use of a basket you can’t hold, a trolley you can’t push and a car you can’t load; dancing in a bar; getting on and off public transport; visiting friends; chasing the little ones around the house; using public toilets; picking up a baby and carrying it to soothe it…I could go on (but I won’t). You will find limitations and barriers to the things you used to be able to do with ease , so EVERYTHING is different (hell, YOU will be different).
This can be heart-breaking, but my advice is that you do them anyway; when the snow hits you won’t be able to stomp around or go for a wintry walk, but you can sit by an open door wrapped in blankets and watch the snowfall. You can’t wander round the shops with basket in hand, but you can find a supermarket that have mobility scooters with a basket attached and whizz around the aisles. Go to the theatre – which will require particular seats needing to be booked and elevators/stair lifts needing to be used – and forget about your injury for a couple of hours. Go for dinner with your friends, but pick a restaurant that is easily accessible and nearby, ensuring you book a table on the ground floor with a disabled toilet. In doing these things you will find moments where you feel normal, where you blend in and forget about your frame. Yes, reality may then hit you afterwards like a ton of bricks, when that “normalcy” fades and you’re left with your current normal, but still do them, because they are invigorating and they are important and they are what makes your time in recovery living and not just existing.
Retaining any sense of my freedom and independence during a time when so much of it has been stripped away has been fundamental for me. Losing control of so many aspects of my life has meant that the things I do have control over – such as what I eat and when I eat, if I am going to walk or use my wheelchair, who I want to see and if I feel up to seeing people – have been of the upmost importance to me, and I have made sure that those around me are aware of this, too. I still need to be able to have my opinion and I still need to be able to make decisions about my life. On the flip side, I also need to reach out to those around me for assistance when I need it, allowing people to drive to me rather than me go to them, acknowledging that I need help with showering, or accepting lifts when I would much rather drive myself. The ultimate things that helped me were applying for benefits, getting myself on the list for physio and arranging private counselling sessions, and for me to be the one to make the decision and for me to be the one to organise it. In this I would advise being the one to ask for help and being honest about your position, which not only helps regain some control but takes a lot of strength; to recognise what you need and take action. That, right there, is independence.
There may be many days when you don’t want to face the world; when you don’t want the world to see you and your disability. You won’t have the energy to deal with people who stare and ask questions; people who will be sat near you and comment on your leg to their friend as though you are deaf as well as physically disabled. Some people will make inappropriate comments, or tell you that you will be fine when they have no idea if you might lose a limb or be deformed forever. People will come up to you and cut across you mid conversation to tell you they know what you are going through because they once fractured their thumb; people will interrupt your day to tell you their own story.
Some of those people will genuinely want to connect and you will share in something, be touched by their story, and it will make you feel warm and safe. Total strangers will also be kind to you, offering assistance onto the train or go out of their way to open a door as you approach. But even the acts of kindness can remind you that you’re different, remind you of your situation, and strip you of your anonymity. You will be noticed, you can’t be invisible. And sometimes that’s too much. Sometimes you just want to hide.
And that is ok – you need to look after your mental as well as physical health so if that means taking time to rest and recover and even feel sorry for yourself for a day then by all means do it. But then get yourself out of bed and out of the house. Get yourself mobile, get some air into your lungs and call up a friend; surround yourself with people who love you. Find a coffee shop or breakfast cafe that suits you; where they provide WiFi and plug points for your laptop, accessible toilets and a window view, and where they are welcoming and accommodating of your needs, a place where you feel relaxed and at home. Create your own world of self-care.
– Push yourself
You can quickly feel bored, unfulfilled and useless; being unable to work, move around with ease and do the things you used to enjoy. It helps to set yourself some daily, weekly or monthly challenges; walk that little bit further, cook a meal for yourself, take the train on your own, wash your hair unassisted. Find a new hobby, like knitting or sewing, which helps with anxiety and depression; write down your experiences, keep a journal of your recovery, and share it with other people; research the ilizarov frame and learn about what is going on with your body. You will have your eyes opened as to the lives of those with a disability and discover a new found fire and passion for fighting for their rights; notice the inequalities, talk about the discrepancies, and make a difference. Learn to be unashamed of your frame and your limb; show it off and be less inclined to hide it, uploading photos with your limb out, loud and proud. Find a way to ENJOY your experience or make fun of it where you can: I made a food art replica of my ilizarov leg; I made a Christmas themed frame cover (or you could decorate yours with tinsel and/or lights); I went on a mobility scooter in Sainsburys and took pictures of my girl-racer behaviour; I uploaded a photo of me in the bath with a glass of wine and book in hand.
Because you will have days when you want to give up. Days where the pain becomes so unbearable and the loss of physical ability so devastating that you won’t want to do it anymore. There are so many times when I say that I am done with it and want out, but then I somehow find a way to pull through; the energy to face another day. Because that’s what a lot of the recovery is about; getting through each day, surviving another day. The ultimate thing is to remember your strength and resilience. To remember you are alive and you are lucky – even though it won’t feel like it at times and even though you would give anything for your old life back. Just remember that you are brave and you are capable and you are not alone. You’ve got this.