Extremely slow recovery after TKR?

Bones, joints and muscles
1

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.

2

First I am sorry for all you troubles the one thing I can think that will help is a resistance bands hook it around your foot and lift with hands do this in sets of 12 to 15 reps it will build your muscle. Hope this helps have a good life.

3

Hi,

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

4

My sympathy! There's so much your body is having to cope with and it must feel as if control is a long way away. The extreme pain sounds grim, but I would guess that much of the delay after that is related to your chemo. Anything that stops diseased cells dividing will have an effect on your healing after surgery, surely?

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.

5

Hi zakzafar!

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!

6

You are expefcting way to much to soon. I am dumfounded why Dr's are so damn set on offering these somewhat hard and fast timetables for recovery. Even being young, athletic and previously in good condition the extent of your situation has put your body and brain in a state of trauma. I had to have my prothesis removed a year ago this month and was immobilized without a functioning knee for 4 months. No bend and toe touch weight bearing. Then a new prosthesis was installed and again immobilization took place for another month. Believe me, it's a long uphill battle. I started on this journey almost 14 years ago with a rare, non malignant tumor and like you, had to have 30 rounds of radiation, albeit at a 50% rate. 11surgeries and 3 artificial knees later I hope I'm done. You will find that each addition action causes a different and more unique reaction......sort of like the old physics theory ones learns in high school. One thing I might suggest based on your information. Your eagerness and desire to get back to a higher level might be your biggest enemy. The body and brain sets certain timetables and when you violate those you either slow down or go backwards. Take your time. You mentioned you love of driving so I'll use that as an analogy. Have you ever been on the threat and been passed by the guy that is changing lanes, weaving in and out, speeding up and slowing down. He goes around you and 15 mins later you, who have been driving steady goes by him because he's managed to get caught in a slow lane. 15 mins later here he come again like a bat out of he'll and 20 mins later he on the side of the road being pulled over by a cop. The body works that same way to a degree. Stay well hydrated, eat healthy even if its just snacks, take pain meds on schedule not when pain suddenly occurs. Do your excercises faithfully just as the therapist has instructed. Let the professionals dictate increases in reps and weight. Rest..........above all else.........REST. The body cannot, willnot heal when it's tired. Even basic body building/physical training tells you that you have to give the body a day in between heavy lifing. Youn can do aerobic wok on the other daysbut you still need a full day of complete rest in there somewhere. More than a few have come ino knee replacement thinking hey are going to beat the system because the are in shape , young and impatient. Joint surgery has brought them to their knees (no pun intended). The last time I saw my surgeon he said that normally they look at a year but in my case it may take 2 and I'll probably have residual pain he rest office. He also told me that when I finish therapy for the strengthening aspect of rehab, the pain will diminish. I achieved pretty much max ROM a 115/0 a couple of months ago but I look like a new born calf when I put weight on the leg. He also told me I'm a miracle that after 11 surgeries I can walk without using a cane or walker. I have to admit, if I was young like you I would be very difficult to get along with. However; I turned 79 last week and have earned the right to be a grouchy old b*st*rd, therefore; I use that right to my every advantage.

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

7

Well I think after all you've gone through you deserve a flipping medal!!! Your boby has been through so much in a relatively short time so it's not surprising you are feeling down but what you're not told when having a knee replacement is the recovery time is LONG!!! It's a lot longer than 6 weeks which I what I had originally thought!! Just do as much as you can and try to get yourself into a little routine especially with regards to taking your pain killers. Little and often exercise is better than trying to push yourself and then feeling dreadful and not being able to do any for a few days. Good luck with your recovery and you will get there ... eventually! 😉

8

Old fat guy and others have said it all - this is going to be a long haul - so try and see it in the long term - like where do you want to be 12 months from now, 2 years and 3 years. You have youth on your side for sure and hopefully many happy and healthy years ahead. I would go in warm water - hdyrotherapy and swimming (not breastroke) this will make you feel that you are still fit and also keep you fit. But do not overdo it - and be patient - stay on the forum - it really helps as people on here understand the emotional as well as the physical journey - I have had to accept I cant dance again but have found other things that make me feel as good as dancing used to. Still hard but if it is not in our control so be it it, and if it is then we have to control it. Your version of 'slow' is actually quick - this is a long and rocky road but I sense for you there will be a light at the end of the tunnel. Good luck .  

9

Good to hear you are still around. Haven't heard from you for awhile. Hope things are going well.

10

Hi Zak, bad luck, sorry to hear of your fight there mate.

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    

11

Yeah still around!! Things are good thank you. Hope u are doing well? It's now just over a year since my op and in the grand scheme of things I thing I've been pretty lucky .. not too many problems just not what I expected !!!

12

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..... 🤔👼👍