If you only read one post, make it this one!
so basically thought Iâd do a top tip run through of my journey with a frame, starting at the hospital stay when it first went on and the challenges I faced and how I hope to help anyone else with it.
TOP TIP; take all the pain medication they give you because in the early days although it may not be hurting at that current time, when the pain does settle in it is very difficult to get rid of / overcome, so best option is to keep onto the pain meds. Iâd say to carry on with the 4 x 2 paracetamol a day until you are really ready to give it up, first couple months I was on this and dihydrocodiene. I was also put on zapain and Amitriptyline for my nerve pain / sleep issues. obviously please seek doctors advice on medication as everyone is different. I was told to avoid anti-inflamitories as it can effect the bone healing process. Additionally when youâre in hospital if the physios come around to see you, trust them and your leg. I was walking with crutches around the hospital about 36 hours after the operation. when you leave the hospital, youâve had a trauma so donât over do it, but weight bearing is essential for bone growth when treating it this way so the more you can do it / the earlier you feel comfortable and confident to do so the better. (Took me around 3 months to really trust my leg and itâs really put a set back in my recovery)
Please donât beat yourself up when youâre not back to ânormalâ straight away! we take such minor things like walking for granted, or walking with a cup in your hand. donât think any less of yourself for asking for help. we all need it sometimes.
Physio therapy - I go weekly to a frame class which has been great both for physical rehabilitation and the mental side of the recovery, everyone at the class is at a different stage of recovery and went through the same challenges I faced so was good to have the moral support of those and the OT that comes around with goal setting activities and tips on diet / exercise / sleeping / clothing / practicalities of the frame. I also had quite a few hydrotherapy sessions which massively helped my with the confidence to put weight through the leg fully. đŠââď¸đŚľđŞ took me three months to trust my leg and the frame and once I started walking it wasnât pretty but it was progress, I know I shouldâve trusted it earlier and it was mind over matter. Iâll put my traditional workout at the bottom for anyone whoâs interestedđ
Sleeping with the frame. I really struggled to sleep at the start of this, but elevation is the key. I put my leg on two pillows and then a blanket under my foot so I wasnât constricted to the ex-gaitor overnight, the hospital did provide me with a lug cuff to tie around the foot and attach to the frame but I didnât get on with it. dependent on how high your frame goes and where the pins are it may be possible to sleep on your side but Iâve found that I can only sleep on my back, luckily I have a double bed that I donât have to share so can sleep diagonally for more comfort. During the winter I adapted a pillow case to go around the frame so the metal wasnât cold on my other leg. Doing a full body relaxation / mindfulness programme could really help settle you down for the night. additionally at the start napping is brilliant, if youâre tired and have time for a nap then do so. đ´đ
Clothing - many different things you can do with adapting clothing, I have cut the legs of many pairs of leggings so I can minipulate bit over the frame and then use a mini skirt / scarf / pillow case to cover the frame. stretchy trousers, poppers joggers and large shorts have also been useful. Dresses were also very useful for me too. you can can the seams and Velcro or zipper the side of clothing but I didnât have the skills to do so. Pyjama shorts / clothing are normally quite stretchy / baggy so I got myself a couple new pj sets and loungeware that have really helped. Underwear snags easily but with all clothing dress the frame leg first to reduce the snagging and always reduces the stress and frustration of getting dressed! additionally when you undress, undress the good leg first so leaves you more manoeuvre room with the frame. Keeping the frame covered does help reduce chances of infection and protects the leg as the metal is in your bones, if the frame gets too hot or too cold then it goes through. My foot was very swollen for lots of the recovery and I found that in winter my toes were very cold so ended up cutting the elastic of my socks so they could go on. For shoes I had an exgaitor shoe that attached to the frame and held my foot up, but as long as it fits under the frame you can wear trainers, flip flops, converse etc. I tended to wear a trainer on the left foot. đđđ the main issue with the clothing, bed sheets or towels is snagging, I am replacing all of the above once the frame is off! Some people found that wrapping the frame allowed clothing to go over / on easier without snagging. cling film, scarves and bandages were all mentioned by people in my group!
Showering - when your doctor clears you, nothing nicer than getting in the shower. I was washing myself from the sink for a very long time but once I invested in a shower stool it was a game changer. if youâre still unsteady on your feet, whack on swim wear and get someone to help you, I put a slip proof mat in front of the stool which was level with my bath so I could sit and then swing my legs in. I had my own towel and flannel to reduce the chances of any infection. once I dried the leg I then cleaned with the solution and wrapped any pin sites that needed wrapping. đŚđż on the topic of pin sites, they will ooze a bit when you start walking as they move naturally with your leg, but if you are worried about an infection, see the GP asap. I had one and the skin was red, was hot, felt unwell in myself and the pinsite was painful and very oozy. youâll also know your body and frame better than anyone so if something changes or feels different get it checked 𦵠(drying the frame can be tricky and fiddly but a cheat Iâve used is to lightly put the hair dryer over it and get the droplets of water off that way)(not to close to the skin though as the frame does heat up really quickly)
Life in general - please donât let the frame run your life. I had to give up work and driving but it can be very isolating. get out and about as much as you can or have family and friends over for a cup of tea / glass of wine or a pint. I had an active job so couldnât go back for health and safety but a few people I know with the frames have gone back to office work with one on. People will point and they will stare in public, most people are lovely about it and will ask questions or try and help in any way they can. Meal prep is something that I found really helpful in my recovery, it allowed me to feel useful and do physio weight transfer exercises without thinking too much about it, for example stiring pasta sauces or cutting an onion. even things like making a drink and being able to carry it back into the room seem like such tiny things but itâs amazing. Going up and down stairs can be tricky with a frame but the physio will reach you how to use crutches to do it, either that or using the banister/wall. Coming down I found harder and my foot was at an angle due to the size of the frame. At the start I went up and down on my bottom which was cheating a bit but I didnât have the energy to walk. a bad habit I soon had to get out of! đ
Diet and Supplements - my surgeon had me on vitamin D supplements as well as Zinc/Magnesium. Additionally youâre told to try and take more calcium as itâs for bone strength and density. In regards to diet although youâre not doing as much during the day itâs important to keep the calorie intake at a normal rate, try eating lots of fibre, vegetables, fruit, protein etc. Itâs also recommended that you lower your caffeine, fizzy drink and alcohol consumption. towards the end of my journey I was also put on vitamin C supplements but again please consult with a doctor before taking supplements đ
Adjustments - if you have to do any adjustments my top tip would be to take your baseline medication at the same times you do your adjustments, so when I did mine it was at 8am, 12pm, 4pm and 8pm so I took my paracetamol at those times and then tended to take a stronger pain killer at about 10pm before I went to bed to ease the pain over night. The adjustments are meant to be staggered so itâs not too much in one go but I found the closer I was to the end of the programme the more it ached. Donât worry if you hear any bone clicking, this was common for me. common side effects during the adjustments were achy pains, oozing pin sites, fatigue (napping between the 12 and 4 rotations was common for me) pins and needles and general discomfort. if you miss a turn donât bulk do it, the programme is set for the way the bone should be, if you miss one simply postpone everything a day and start doing them a day behind when youâre meant to.
Swelling, elevation and anything else - swelling I found was really bad so elevating the foot was key, I am lucky enough to have reclining sofaâs so can now pop it out and elevate like that, but at the start I couldnât lift my leg that high, so it started with a couple pillows on the floor and then a beanbag under it and then I worked up to the recliner. taking shoes and socks off also helped reduce the swelling. 𦶠if you have an adjustment programme then take your paracetamol baseline throughout as some days can be very painful. During the healing process your leg may feel itchy, swollen, hot, pins and needles, achy, painful. you may hear some clicking but Iâve been assured this is all normal. If The frame gets too hot or too cold then you will feel it in your bone, keep it well wrapped in the winter months and loosely covered from direct sunlight in summer. Transport is an issue for many and debating whether sitting in the back of the car with your leg across the back seats or the front and pushing the chair right back is a difficult decision. I found that the front seat is more comfortable and I felt less bumpy when sitting there than the back seats.
Mentally and Physically - as a therapist I understand how important mental health and wellbeing is. During this process there will be times where you feel low and days where you donât want to get out of bed or wish things were different, if those feelings are becoming normal or overwhelming for you or your support system, please contact a GP about it. The journey with the frame is like a rollercoaster, youâll be up and down, round and round. Speaking about your emotions to a support system can really help, please donât isolate yourself! try and live day to day activities as normal as you can, adapt to life with a frame. get out the house and see your friends, staring at the same four walls isnât healthy for you. Mental health is just as important as physical health, you wonât be able to fully recover if youâre not healthy in both mind and body. Headspace is a great app for mindfulness and relaxation techniques if this is something you think would be helpful.
So there are my top tips and experiences, canât currently think of anything else that I havenât mentioned somewhere in this post. Everyone will have good and bad days, the people around you are also affected by the frame and impact it has on both your and their lives.
Keep up with the medication, supplements, physio / hydro, keep your step count high and your spirit higher. Surround yourself with people who care and please donât be afraid to ask for help or take a day off to rest. I am currently also on ultra sound machine for the break hoping to see some progress with that on the next X-ray.
I have never used a wheel chair (apart from in the hospital) to get around, always went out with crutches but know a few of the others in the group have used mobility scooters as an extra sense of security and reassurance when going out in public. Donât be scared to ask for help or if you are walking donât worry about being slower than people or needing frequent stops.
If youâre having a good day, do those extra 100 steps or whatever your targets are, it makes up for those down days where you barley move! đ
General physio routine / circuit
- leg press 5 x 10 reps, single leg. I do 35kg on the frame leg and 45kg on the non frame leg. I then do 2 x 10 reps of 45kg using both legs.
- wobble board I do 5 minutes front and back and then 5 minutes side to side, also try and do a few minutes balancing it in the middle. (This is really helpful at the start of therapy as it helps weight transference.
- 10 minutes cross trainer on level 10. sometimes I have to do this is two 5 minute stints as it very hard work.
- step ups x30 left leg first, x30 right leg first. this one I have to do next to the bars as sometimes when putting the framed leg up first I want the extra support. (Try and do this on the stairs at home too)
- stairs - just go up and down a few times, at the start of the journey it was both legs onto the same step but now i try and alternate my legs. Going down is much harder to alternate and I still need the hand rails for support. (Do this at least twice a day at home)
- tip toe and heel dips, after Iâve done the stairs I remove my exgaitor shoe and do some tip top and heel dips, this is to try and gain the movement in my toes and ankles. I have to use both hand rails for support on this one. (Can do this one easily at home with the stairs too so try and do it once a day)
- trampet, on this one I also do it shoe less and itâs just about trying to increase the ankle range of movement. I either do marching / high knees or do something similar to the side to side on the wobble board rolling my foot.
- calf stretches, medicine ball squats, tightrope style walking and side steps are also part of the routine of i feel like I need them. I also like to stand on my bad leg and stretch/tap the good leg at 6-12 positions on a clock but do it slow and controlled. My physios have also tried throwing and catching making me stretch on the frame leg, we tried a game of football where I could only kick with the unframed leg. Hydrotherapy was also a big part of my road to recovery as it allowed me to get the weight transference and help my knee bends! hula hooping was also an exercise I did when I was struggling to load the frame leg, it just allows you to work on balancing yourself and the weight evenly. could be worth giving it a go if youâre able to stand unaided. Additional help for the knee bend I found was putting a plastic bag under the foot and bringing your knee back, i found it worked best on tiled/wooden flooring so I did this in my bathroom sat on the toilet. Push and pull your leg/foot forwards and backwards. this was great for the first month or so when I was really struggling.
