Distal femur & total knee replacement question (long post - sorry!)

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Kelly

United States

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#1
Jan 14, 2011
 
So this might be too specific to get any help, but I figure I may as well try! My question relates to range of motion and I would like to hear success stories from some of you.

the fastest possible history of my leg's issue:

Nov 08 - femur brakes, testing, biopsy of mass involving femur, surgery to keep leg stable until diagnosis

Dec 08 - diagnosis of osteosarcoma (bone cancer), limb salvage surgery with plates, donor bone of about 1/2 my femur, removal of half my quad muscle

April 09 - scope of knee to remove scar tissue

July 10 - surgery to remove plates from femur (due to pain), placement of intermedullary nail (a rod that ran the entire interior of my femur)

Aug 10 - donor bone breaks, doesn't heal at all

Dec 7 - distal femur and total knee replacement
Dec 14 - bilateral heel cord release (still in lower leg casts)

So I have a Stryker knee & distal femur now. My question is - have any of you who have either had a TKR or a distal femur replacement had very good success with ROM?

I'm at -7 to 134 degrees. Which I know is very good - so please don't think that I'm ungrateful. I do know that for some people, they struggle to get even close to that (and if you're reading this and in that boat, I am terribly sorry for you - my results were nowhere near this previous to surgery #5!)

I have been an athlete my entire life (was actually kicking a soccer ball when my femur snapped due to the tumor). My other leg is about as flexible as possible (goes easily to the gluteous maximus) and it would be great if I can get even better flexion on my challenged leg. I started rock climbing this fall, I snowboard, coach soccer, bike, etc. and would love to get a little more flexion.

Please share with me your stories of ROM after either TKR or distal femur replacement. I would like to hear things that work (or don't) including what kind of PT, stretching, strength training - really anything that might help.

Thank you in advance for any help you can provide - I look forward to hearing from you!
Joanne

Middlesbrough, UK

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#2
Mar 22, 2011
 
Hi there
I had a distal femur and total knee replacement in November 2007 due to a chondrasarcoma and found it very frustrating at first. Three years down the line I have an excellent bend on the knee, a lot less stiffness and greater flexibility. I was never an athlete but was always active so I can imagine your frustration. I cant climb mountains like i used to but ride bikes, do 10 mile walks and have adapted accordingly. Like you I am grateful that nothing worse happened and I have been given a second chance.
Pilates has worked for me and also keeping the quadricep toned - this helps prevent knee pain.
When I see all the injured service personnel I count my blessings. Good luck.
sarah downing

Chicago, IL

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#3
Mar 25, 2011
 
guys, got a site here, you may want to read it.. its all about knee replacement recall. Just want to make you aware of the possibilities to your femoral surgeries. Check this out. http://www.zimmernexgenkneerecall.com/updates...
jan mckay

Bournemouth, UK

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#4
Apr 13, 2011
 
I had a distal femur replacement on 29/12/11. So far so good. I have physio twice a week and with her help can achieve a 120 degree bend, although this is painful. I see a PT who gives me exercises to ease the muscles on the outside of my thigh and strengthen the ones on the inside by my knee. I have to use a firm foam roller (feels like concrete) to roll on using my outside thigh and body weight; lots of squats making sure my feet are straight and knee not turning inwards which it has a tendency to do. Using a gym ball to sit on and move backwards and forwards with feet on floor. Today I was using the treadmill and walking in a squat like manner (looking very strange!). The physio said the most important exercise is the bike, moving the seat gradually down to get a better bend of knee and putting it on a hill or random programme. My consultant said I should achieve 120 degrees but I am determined to get further. You have done brilliantly.
Joanne

Middlesbrough, UK

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#5
Apr 28, 2011
 
Sarah thanks for the link but wont be reading it!
Its best to focus on the positives rather than worrying about what might happen but cheers!!!!!!!!!!
tony fruda

United States

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#6
May 25, 2011
 
in oct. 26th 2003 i was dignosed with osteosarcoma went through 9 months of high dosed chemotheropy then had my distal femur and a total knee replacement then 2 more months of chemo (the tumor was the size of a soft ball)now its been 7 years when i get up or move it quick i get a tingling feeling like my foot feel asleep?i dont get it other than that i've got great range of motion i work very hard on it, i log with a horse in the winter and do construction work the rest of the time.staying positive is the only way to go?
kelly

Granite City, IL

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#7
May 26, 2011
 
Hi all! Sorry for taking so long to reply & thanks for all the responses. My husband left me two weeks after I posted (while in double leg casts from bilateral heel cord release). Have had to start working again - two bartending gigs. Leg is getting stronger - frustrating that I cannot take stairs normally yet, but still have very good ROM. Tony, I too have had circulation issues on my leg, my ortho onco isn't too worried about it (he's not the one losing toenails, but whatever).

My new jobs are forcing me to walk a whole lot more than I would have...tiring, but my surgeon cleared me for an upcoming 3 week road trip cross country which will include rock climbing, whitewater kayaking, & with any luck some snowboarding & mountain biking. I do hope you all are doing well - if anyone of you needs support - look me up on FB under kelly czypinski (I'm the only one)- I'm linked to some amazing cancer survivors and support groups. Again, thanks for the replies!
andrea

Calgary, Canada

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#8
Jul 30, 2011
 

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Cycling has worked best for me for increasing ROM. However I've noticed significant difference b/t passive and active ROM levels and haven't found a way of increasing my active ROM (suggestions welcome)

Has anyone had any success in returning to running? I am able to hike, cycle, and rollerblade but running and stairs are still a no-go for me. I'm 9 years post-op and would really like to take my functionality to the next level.

Any advice is welcome, cheers!

ps - Kelly I tried to look you up but no luck, perhaps your privacy settings have changed?
Olivia

Canberra, Australia

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#9
Oct 5, 2011
 
Hey all!

I'm a 17 year old girl, and was recently diagnosed with an osteosarcoma of my left distal femur. I went through 2 months of chemo, and had my distal femur and total knee replacement 11 days ago.

I know it was only a very short time ago, and I shouldn't expect to be running marathons yet, but I'm just wondering what particular stretches, and excersises helped people the most. I haven't got a great bend so far, in the CPM machine I only managed up to 60 degrees, and I have not yet been back on the CPM machine since coming home. I found that the CPM felt like it helped me a lot, as sitting in chairs and bending my knee that way was far too painful, and the CPM machine was something I could tollerate. But now I'm back home and not at the hospital, my physio does not have a CPM machine, therefore I have no access to one.

What particular stretches and excersises helped you all along the most?
jan mckay UK

Blackwood, UK

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#10
Oct 7, 2011
 

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Hi Olivia
Things will get better but you really need to work at getting your bend. I am 9 months post op and still have regular physio (fortnightly) with a brilliant physiotherapist. I also book sessions with a personal trainer, I make them half hourly as it is cheaper and he can concentrate on my balance and leg exercises for that half hour and I can do my own thing in the gym for the rest of the time. I have found cycling the best exercise and if you gradually lower the seat height the bend will get better. I hired an exercise bike for a couple of months and to start with I couldn't do a complete turn and had to move my legs backwards and forwards on the pedals. You are young and that will be in your favour but you need to keep moving and I am afraid to say it is painful. I still get pain when I exercise and often when I don't. Get as much advice from your surgeon/physio as you can about the exercises suitable for you. I have been advised against anything high impact so I don't expect to be running again. My leg always stiffens up between visits to the physio even though i do regular exercise and have an active job so I can't emphasise enough the benefits of a good physiotherapist. Above all stay positive and good luck!
Neil

Upper Darby, PA

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#11
Oct 16, 2011
 
I got distal femur and knee replacement for sarcoma of femur on Aug 15th. It's been 2 month. ROM 0-120.
kelly

Granite City, IL

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#12
Oct 17, 2011
 
Olivia - I'm with Jan on this....work on ROM as much as possible. I'm at -2 to 135ish. I've also changed my thinking on what activities I should be doing. Running might not be a good plan. I went whitewater kayaking with First Descents this summer & loved it. See if you can find a new sport that doesn't require such demands of your new hardware.

I'm now thinking that I was way oveerdoing it in an effort to get back to "normal"...the last couple of months I have scaled way back on workouts and my leg is feeling much better. I'm just now starting to work out again and the leg feels good.

Anyone who has been through a distal femur replacement is welcome to look me up on FB - kelly smith ellis (right now my profile pic is me & my fellow survivor sister rock climbing)

Take care all!
Olivia

Canberra, Australia

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#13
Nov 5, 2011
 
Thanks Jan and Kelly!

I've tried with the excersise bike but I still am not able to go the whole way around.

My bend is HORRIBLE! I'm getting incredibly frustrated with it. I'm at 0 - 80ish. I can get it to 80 degrees at the most, but that's with a lot of pain. I do my excersises atleast 5 times a day, I push it as far as I can but it just feels like my leg is stiff, or stuck.

The strength has gone great! I can walk on it, stand on just that leg with all my body weight, I can walk around on my tippy toes. I've been doing lots of strength excersises with ankle weights and I'm so proud of it that way. But the bend just won't come!

I'm 6 weeks post op, and I go to physiotherapy 4 times a week, and hydrotherapy twice a week. No matter how hard I try, I just can't get it past 80 degrees :( The pain just becomes way too much. Can anyone suggest any good excersises that benefitted them? I've done every excersise the physio and hospital gave me, but it feels like my progress is just going too slow. In 1 month I've only gotten about 20 degrees more!

Thanks guys :)
Jan UK

Middlesbrough, UK

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#14
Nov 6, 2011
 
Hi Olivia
Remember you have had a major operation and are only 6 weeks post op! You are doing extremely well, your ROM will improve but it really does take time. Don't check the degrees every time you see the physio as you will become depressed when it doesn't change. It is a slow process but you are doing all the right things. Think of the amount of scar tissue there is and this needs to constantly be broken down - I take it your physio digs in deep to do this? It's great you are doing so many strength exercises but your muscles will tighten in different areas and may initially make your ROM harder to achieve and that is where the physio helps with the massage. My physio made me a cardboard tenplate of 120 degrees so when I was sitting down I knew how far to aim for. I am now 128 degrees after 9 months but that was immediately after a physio session. When I started with the exercise bike I found I could pedal backwards better than forwards and that was how I did the first circuit with the pedals - try this. I saw my surgeon last week and he said I should pedal everyday and will always need to exercise. He said to get a bike,place it in front of the TV and do 20 mins every evening. Unfortunately, I am not motivated to exercise at home but I do get to the gym every other day. When I was 6 weeks post op I took strong pain killers before I saw the physio and before I went on the bike which helped. I am sorry I can't recommend any other specific exercises but I do pilates every week. Good luck, it's hard work but keep doing what you're doing and it will get better.
Olivia

Canberra, Australia

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#15
Nov 12, 2011
 
Thanks Jan! My Mum is looking at excersise bikes, and I'm almost excited to have one to play around on and use.

I went to see my surgeon, and he recomended I have a manipulation. I had the manipulation 2 days ago, and it's KILLED my inner quad muscle! However, my surgeon bent my knee to over 100 degrees, and yesterday I got up to 90 degrees on the CPM machine that I'm incredibly happy about. Except today I woke up and I can barely move my leg! My muscles literally feel like they've been torn :( The pain I used to have when bending is gone, now it's just my quads!

Can scar tissue reform? I can't really do many of the excersises because it's awful pain but I don't want my knee to stiffen up again!:(

Should I push through the pain and bend it (if possible), or should I let my muscle heal itself a bit? I don't want to make the damage worse!
Jan UK

London, UK

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#16
Nov 12, 2011
 
Great you are getting an exercise bike Olivia. I really am not an expert and can only comment from my experience. It sounds you are doing all the right things but I really can't say whether or not you should push through the pain as every case is different. Please try to get as much advice as possible from physios, but there will be pain associated with trying to increase your ROM. Let me know how you get on.
Olivia

Australia

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#17
Nov 25, 2011
 
I've gone backwards and I'm literally going insane! My range of motion is now 0 - 55 at an incredibly painful push! How is it possible that this is happening!!?:(

My left leg is useless! I'm in constant pain, and no matter what pain killers I take I still hurt 24/7. I can walk, but it's stiff legged and looks as if I'm half robot. I'm so insanely frustrated by this. I have a pony I'm dieing to ride in my paddock and a knee that just can't handle even going out to visit her!

I feel I don't have enough time! As soon as I have any progress with my knee I have more chemo where I'm left feeling horrible and sick, and all my progress just goes out the window. Living with a leg that bends only 50ish degrees is depressing! I've had 5 different lots of x-rays to make sure everything is still aligned and there are no problems, and my surgeon just can't work out what's wrong.

It's like as soon as I losen up all the muscles and ligaments that let my knee bend, they spring right back into place and I can't bend it all over. Even when I excersise every hour. Ten minutes later, they've shortened up again and leg = stiff once more.

I need some encourageing words :( 9 weeks and 0 - 50 is making me cranky.
Kelly

United States

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#18
Nov 25, 2011
 
Hey Olivia -

I don't know if it would apply to you, but I figured out that I was doing too much PT. The amount of pain you are experiencing - it seems like you have a massive amount of scar tissue holding that knee tight. My ROM has held steady now at normal, but I also probably have less tissue around my knee (half my quads were removed in surgery #2). I have much less pain now that I've backed off on workouts. I have not been to physical therapy in 6 months and have done minimal workouts for the last 3 months. I'm getting pretty close to taking stairs normally - can do it sometimes now.

As for the surgeons - I think we often look to them to have a definitive answer when in fact what they do for us is as much art as it is science. As a result my bilateral Achilles tendon release, my heels hurt constantly. And my feet are smaller than they were before and my toenails are growing in differently now too. My surgical teams are stumped.

I'm now nearly a year out from my distal femur replacement surgery and my leg has become much better. Patience is not one of my virtues, but it does seem like the less I do to "push" my leg to get better - the faster it gets better.

If you are able to not push your leg to the very limit of what it will do, maybe inflammation will relax. Do you find that your knee is hot/warm to the touch all the time?

I wish that I had more encouragement to give you. It will in fact get better, but I completely sympathize with the agony of feeling like you just want to get back to what you love to do. Hang in there. If you have not yet signed up for it - check out Imerman Angels. My angel helped me through the worst of my experience.

Take care!
Kelly (aka Scar)
helen

Auckland, New Zealand

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#19
Feb 18, 2012
 
Thanks everyone I only had my op nearly 3 weeks ago and I was expecting a miracle. I had to find my own physio as there is a month waiting list here and i wasn't prepared to wait. I have 90 degree bend already and have found that using an eliptical has helped starting off with backward motion and eventually doing forwards as well. I have tried the bike but to hard, I also have a skateboard to move back and forwards. I am not pushing it as I know that i will over do it and end up at square one. Good luck Olivia it will get easier.
Thank you

Since: Mar 12

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#21
Mar 25, 2012
 
It was interesting hearing different stories. I was dx with osteosarcoma apr11. I had part of my femur replaced and a total knee replacement. After surgey I underwent 5 months of chemo. I noticed no one really mentioned what impact chemotherapy had on their recovery from surgery. I found that laying around from being sick and weak from chemo caused me to lose all my muscle in my leg. I finished chemo Nov11 and started back doing PT in Dec11 but Im still not able to walk that well from weakness and the numbness in my feet from chemo. I'm surprised how well everyone else is recovering and I feel so stagnant. I'm doing home excerises and ride a recumbent bike. My ROM is great just have a lot of weakness. It's like I guard my leg when I wAlk and don't allow it to straighten because the fear of it buckling. Has anyone else experienced this?

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