Extremely slow recovery after TKR?
Posted , 10 users are following.
Hi guys! I'm gonna include a fair amount of detail so you get the full picture.
I had a total knee replacement nearing the end of October (23 weeks ago) to get rid of a tumour on my knee. I was diagnosed with high grade osteosarcoma - a primary bone cancer that occurs mostly in teenagers - a couple days after my 19th birthday. 4 months prior to this, I was very active with sports, parkour and freerunning being a huge hobby and planning to initiate boxing and skydiving as ones too. This is when the pain started and months later, the tumour had developed into a huge painful ball, weakening the knee. I had a biopsy done to test for a cancer, which served to fracture the knee and put my right leg in a cast for more than 3 months pre-surgery while having chemotherapy, so as to not being able to use the knee at all. I had by then lost at least 15kg.
The knee was unusually painful after surgery; I was taken into intensive care and remained on a morphine pump for a couple weeks. I don't understand why it was so painful. I've always known myself as pain tolerant. I used to win most fights with bigger guys (having loved to fight as a kid and teen), not because I was good at fighting but because I could take too many hits and everyone knew. The biggest injections don't make me flinch - I could do it myself. Hell! I'd bet I'd be able to bite a finger off if the situation presented itself. The pain meant I was progressing slower with physiotherapy. Most people would achieve a 90° flexion before leaving the hospital a week or two later, but I couldn't bend it to 90 until months afterwards. This was partly because my leg was locked straight in the cast for months before surgery. Regular high strength chemotherapy after surgery also meant I was completely bedridden in hospital for long periods and was unable to perform daily activities or participate in very much physiotherapy.
Here I am now, 5 months post-op and closing in on the end of chemo treatment, able to do very little with my leg. I've been exercising the leg a LOT over the last couple months, as my chemo is now less intense. I still use two crutches to get around. I can walk very slowly without them, but need to make sure to keep the right leg locked straight when leaning on it, as I haven't yet developed strength enough to hold myself on an even slightly bent right knee; it would reflex and lock straight or I'd just fall. I easily bend the knee to 100° and it takes a fair bit of effort to take it to 115° but beyond that is impossibly painful; I just can't do it; I'm not sure if it would even go much more. My other knee is very flexible - I can sit on the leg, bent. I can't also, from a standing position lift my leg back too much. What really bothers me, however, is the fact that I can't lift my foot at all. From a sitting position, I can move it forward a few centimetres, but that's about all. If I'm standing, I can, again, move it forward a small amount, but aside from that, nothing. When lying down, the leg won't raise from the surface, not slightly.
I love cars and driving is a huge deal to me. My poor motor skills with the knee means I can't drive now (except with adapted controls). I just can't wait to be able to lift my leg straight, but the doctor said there's a chance I won't be able to, and that I'm unlikely to ever be able to kick a football again or jog, but that walking with a limp is the limit of my rehab. What's more, I'm awaiting 5-6 weeks of radiotherapy on the knee after chemo's over, which will prove to stiffen the knee and damage even more tissues.
Why am I progressing so slow? Why is it that my recovery's completely south? I was told before the operation that I'd be able to run again within 6 months. That doesn't look likely. I'm not talking about aiming to jump from the second storey like I was aiming for with parkour before my tumour appeared. I'm not talking about starting boxing classes. I'm not even taking about continuing to run as a hobby, but why was I told it's unlikely that I walk again without a limp, and why is it taking so damn long?
Thanks for any replies.
0 likes, 11 replies
tana4life zakzafar
Posted
sue64229 zakzafar
Posted
firstly, you poor bugger. What a terrible thing to endure at such a young age. I think you're being very brave. As for the lack of movement in your new knee, I can only say that it wasn't a straight forward total knee op was it? Having that tumour would be hindering your recovery. I had bilateral total knee replacements in Oct. I'm going pretty well I suppose but I'm not pain free by any counts. Nearly every night a pain in one knee wakes me. It just throbs. I'm very stiff if I've been sitting a while and it hurts to first stand but is OK afterwards. I am still taking a fair amount of painkillers. I already had a vascular problem in one leg and it's been years of pain killer taking.
Anyway, this isn't about me. I'm really sorry you're going through hell but it will get easier. U have youth on your side. Don't be disheartened just do your excercises and physio and take pain killers. I'm not a doctor but I'm pretty sure you won't be able to play football or jog. This would be too much strain on your new knee. I'm sure you will find other things to do with your free time. Your young, you're alive lol
you make me feel quite humble. What an awful thing to go through but that's just it. You're on the home stretch. Lobe good to toys elf and take care.
Sue xx
Lame_woman zakzafar
Posted
The pre-op plaster will stiffen your joint. I had a couple of months in such a cast, back in the 1970s. Thought it'd never bend again! The leg lift thing is weird, but it does seem to be variable and I found it just came back by itself in time, but not before a lot of muscle wastage happened. I don't know why it happens.
I think you need a discussion with your oncologist and surgeon to look together at the problems and see how they can be mitigated. You are so young and this sounds like a long treatment programme, but your youth means your have potential for physical recovery and resilience older patients cannot achieve. You need to work with your physio to find ways of strengthening your muscles and getting your new knee moving, even while the heavy treatments for your osteosarcoma are ongoing.
Look after your diet and get the rest you need. This isn't a quick sprint to recovery, but more like an Ironman event!
Best wishes for your recovery.
cheryl90571 zakzafar
Posted
Welcome to the knee forum!
You sure have been through A LOT! After reading your story, your TKR sounds EASY compared to everything else you have had to deal with recently! A tumor, chemo, and the surgery and procedures that go with it is HUGE! Your body has been through LOTS MORE than just dealing with your TKR!
After having my first TKR last June and my second around the time you had yours, I can say that just dealing with those two surgeries has kept me mighty busy these last nine months. Add all you have been dealing with your tumor and chemo, and you have had an EXTREMELY busy time of it!
There are many "shoulds" heard regarding knee replacements, but the truth is....each one of us has our own UNIQUE story, our own set of challenges. Even my two knees being in the same body had very different stories of recovery!
Being young is always looking forward to the future. That is a good thing. Sometimes, though, it is really helpful to stop and think about all you have had to endure and to look for small gains and improvements that have taken place in your journey.
It sounds to me that you are making fantastic progress considering all you have had to deal with over these last five months! TKRs are not completely healed until a whole year has passed. You had your tumor, which is an ADDITIONAL issue on top of the recovery from your knee replacement. Then you have had chemo, which, from what my friends who have had it have said, is a whole experience unto itself. Prior to THAT, your leg was imobilized in a cast. You can't practice bending when your leg is in a cast, so bending following all you have dealt with WOULD take quite a bit of time! Radiology is something I am not familiar with, but coming up for you are ADDITIONAL procedures that are needed which add to your long list of things that your body has had to endure.
I know it must be very hard comparing that healthy other leg to your one that has required so much attention over these last eight months. As HUMANS, we naturally want everything to go perfectly and FAST, and easy. We are all alike on that! Sometimes, though, there are many hits on a part of us that require almost infinite patience as we travel that long journey. Your knee is one of them.
I am glad to hear that you are a fighter. I am a fighter, too! It helps to not give up and to keep pushing through. Sometimes being a fighter requires looking at all that you have already accomplished and realizing that the battle is and was tougher than it seemed at first. No matter. You will succeed. You just may need to readjust your time frame a bit.
Please keep us posted on your progress. You will make it. You WILL!
Sending prayers of strength, patience, and peace to you today!
Oldfatguy1 zakzafar
Posted
As far as basic advice, I buried it in here somewhere.
Slow down
Rest
Hydrate, hydrate, hydrate
Take pain meds on schedule
Excercise as per therapists instructions
Rest
Eat healthy
Use an outlet of your choice: music, reading,yoga, slow casual walks etc as a way to practice. My wife has Parkinson's and someone gave her a coloring book for adults lots of small intricate designs. As long as she doesnt overdo it she can really get caught up in the relaxing part
Make sue your meds are working. If the arent, all to your primary care Dr. There is a laundry list of pain eds a mile long that can be tried and blended.
Stay with this forum. People on here have been to hell and back with every problem imaginable and will offer you a lot of expert advice.
Don't be discourage. It will get better. Just remember that everything else can seemeed to have healed an Dr the nerve endings are still trying to refire. Everytime one does there will be a pain that will go along with the process.
STAY FOCUSED ON THE PROCESS, not the end of the journey
Good luck
Clarkey1962 zakzafar
Posted
Oldfatguy1 Clarkey1962
Posted
Clarkey1962 Oldfatguy1
Posted
caroline46398 zakzafar
Posted
Roach zakzafar
Posted
When you say you had a TKR because of the tumour, was that a distal femur prosthesis - where the whole knee joint and some thigh has been excised - or the standard tkr where just the femur & tibia heads have been capped?
I had a distal femur prosthesis replacement in May 2014 for a persistant nasty disease - that same disease that 'OldFatGuy' had. This kind of replacement requires the slow integration of femur stem with prosthesis, but does develop a very strong union in time. I'm totally impressed with mine, two years later.
I did quite a bit of looking around at the time, and observed that this kind of replacement is often done in the case of osteosarcomas - and that, as you said, younger people seem to more prone to develop these kind of tumour.
I ask, because unlike a standard tkr, this is a very big operation indeed, and does take a whole lot of determined focused effort to come back,.. but come back you will. I'm currenty walking up to 20km per day, and could do even more if I had the time. I can't run yet, but in time, I beleive I will at least jog.
I was 50 at the time of surgery, and had the luxury of doing four months swimming prior to the day. This was a vital 'Bounce back' tool for me in terms if fitness and muscle tone in my leg and my core strength etc. So if you had such an operation and were denied the opportunity to prepare - in fact hampered - due to your various treatments, I can imagine that your recovery would be quite challenging and long but, importantly, it will happen.
Good luck with it all Zak, make a fist & fight of it. I'd love to hear that its improving as the months go by.
Cheers,
Roger
Mkhp zakzafar
Posted
I just saw this discussion. U truly are going thru so much physically and I'm so sorry to hear about your struggles. I pray by now u are finding better health with less pain. Sounds like the group has got u covered as far as stories shared and advice rendered. God bless, kathy p. P.s. I'm 4 months po, still swell, hurt, pain etc and I thought I was doing everything right as far as exercises prescribed. Still goin to pt. will just have to find that patience button and keep working at it. I truly hope u are much better from the time u first wrote this discussion..... ??????