TKR I really didn't know what I was getting into!

[Josephine]

Yes, I did read the article about compartment syndrome - and most of the other informative BoneSmart articles, mostly when I was spending most of my days in bed!

Okay - thanks. A lot of people don't read the articles, you know, so I have to ask!

1) Sleeping: 0 - 1
Getting out of bed: 2 - 3 (stiffness)
Walking around the condo (free of devices): 4
Sitting: 4 - 5 (seems to worsen the longer I sit at a table)
Standing: 6 (7 if standing for a long time, e.g. Cooking or waiting in a movie line)
Recumbent bike: 5 - 6, if wearing my neoprene brace or holding the outside of my knee with my hand. Pain increases when I stop. Irritated tissue/IT band?
Walking outside, shopping, etc.: Starts at about 4, even with brace and cane and increases to 7 or 8 the longer and farther I go. Never comfortable. There's a pulling sensation over my knee and often a sharp pain in the outside of the joint when I turn.

Gosh, those are high pain levels!

2) I haven 't been prescribed painkillers since about the end of March. I took oxycodone until then, when the docs wouldn't give me any more. I find Tylenol X-strength 500 g. helps to dull the pain. I take 1,000 g at a time when I need it, before I go out to socialize or to buy groceries, etc. Luckily, I usually don't need to take it at night because I can sleep without knee pain waking me up.

500mg Tylenol is useless. If you're going to take it, take 1,000mg at a time. It's the manufactures recommended working dose.

I rub on X-strength Voltaren (recommended by surgeon and GP), but apart from the little massage, it seems to have little, if any, benefit.

No it doesn't. It's all a big con!

There was a documentary done on UK TV a few months ago, investigating the effectiveness of topical analgesics. The presenter was a doctor and as you might know, doctors are often very willing to have needles stuck into themselves in the cause of science! Well this chap had needles stuck in his knees at various depths from just under the skin to joint deep (ouch!) for several days over a period of time. Then he rubbed in each of three topical gels, ibuleve, voltraol (diclofenac) and KY jelly as a control. During the succeeding few hours they took readings to see how each application penetrated the limb. Unsurprisingly, none of them went further than the subdermal fat which is just beneath the skin. So all this advertising about it is total rubbish!

3) Swelling is slight now, but it was substantial after surgery and took about four months to go down..I can't see much, except for that little tender patch that's been there all along, which I think is in CLF4. But I suspect some internal swelling/irritation must be the cause of at least some of my ongoing pain.

Okay - I got it.

From time to time, my left ankle swells a bit on the outside, but I'm not worried about that because my PT says it's "drainage" from the still healing knee. Does that sound right?

Not really! They make me laugh, these potty explanations they come up with! It's more likely to be just dependent oedema from sitting of something.

4) Flexion is 110 to 115, depending upon how stiff or warmed up I am. It was a long, slow road and I was stuck at about 100 until about 12 weeks. Extension has been 0 since the beginning.

Extension is good. As for the flexion, you say it is 110 to 115 depending. Can you be more specific? When was it lower and when was it higher? Were you 'helped' to achieve the 115?

5) & 6) I had an ice machine from the beginning and iced and elevated almost constantly for the first three or four months for long stretches at a time. I tried to leave the ice on for an hour, but it actually became very uncomfortable to lay with my legs elevated for very long. Yes, I did arrange my pillows as per BoneSmart's article!

"it became very uncomfortable to lay with my legs elevated" - does that mean you laid with your legs/knees were perfectly straight? Like this

If so, don't because our knees don't like that position. It causes pain in the back of the knee. You need a little something behind your knee to take the stress off, like one of these

My PT says I should lie on my back with my legs straight up the wall. That actually feels good!

Like this? It surely is a good exercise!

Now I use ice packs - until they melt - whenever I come home from being out and before bed, while watching TV. That's three or four times a day, mostly to help with pain control rather than swelling at this point.

Yes, people tend to miss out on that very important thing!

6) My activity level is low for this far out from surgery. To sum up, I'm trying to live a mostly "normal" life without overdoing anything

Okay - that's good.

7) I do little to no exercise now, which is a health concern for me. About six or eight weeks ago, I decided I was ready to try to do some exercise because I'm getting more and more out of shape. A couple of days in a row, I used the recumbent bike for about 30 minutes, then went for a walk around the neighborhood for about 20 minutes. I felt happy with that accomplishment, until the pain levels the next day (7 to 8?) made me give it all up. Very disappointing!

I know but you did right.


At home:
IT band exercise leaning against the wall with legs crossed: 45 secs 2 - 3 X a day - okay
hang leg over side of bed to stretch out IT band, x2/day about one minute each time - okay
flat on back on bed, cross left leg over right leg to stretch IT band - okay
knee slides about 2x/day - 10 to 20 each time - I think you mean heel slides, yes? This is a very easy exercise to do badly and this is badly. I'd give you my article on how to do heel slides properly but the truth is, that with a flexion of 115, you don't need to do them!
foot on step, bend past 90 degrees - 2 - 3x/day - 10 - 12 each time - and neither do you need to do these
so far, these exercises haven't worked to reduce pain - I'm not in the least surprised. In fact, I think they might even be causing it! Exercises very rarely relieve pain in my experience.

PT: Once every two weeks for about 45 minutes, I still go to my gentle, long-time physiotherapist who's helped me with various back and neck issues, etc. She does:
- a couple of minutes with a laser machine to, as she says, "stimulate the blood flow"
- massage of my knee
- work with her elbow along my IT band from my hip to my knee (uncomfortable and a bit painful at times!)

These are okay but - don't like these:

quadriceps stretching with me lying on my stomach and pushing my foot against her shoulder - that's causing harm to your knee and causing pain
knee slides - 6 or 8 - read my comment above
she also helped me regain a normal gait and helped me walk without limping (which I can do, but it's painful) - then I suggest you stop doing it until the pain subsides.

Sometimes I feel that, compared to other TKR recipients, I just have a low tolerance for pain. However, after 8 months, I'm ready to have even just one pain-free day!

I bet you are! However, you will continue to get pain unless you stop these exercises - the ones I have crossed out. So long as you keep doing these you are actively causing your pain and it won't stop until you stop doing the things that cause it! Simple as that!

as for this

I would suggest that these are general muscular pains from the exercises you have been doing.
Specifically the red area is strain and inflammation of the patellar tendon which is the quads tendon the other side of the knee cap!
The blue spot is like to be ITB (ilio-tibial band) issues

 

[jaschembra]

Can Josephine comment on the red and blue dot areas in the graft? Those are still my areas as well and I'm curious.

Except for pain when sitting, I am right there with you on the levels. Maybe not as high, but 5's for sure when up and about or standing any length of time. I still think it's part of recovery. We're just the unlucky ones to not have that pain free experience by 8 months. I'm hoping the reduction in those specific exercises will have with some of your pain levels. Do you feel like you would have less discomfort if only the internal swelling would go away? That's how I feel.

 

[Josephine]

Can Josephine comment on the red and blue dot areas in the graft? Those are still my areas as well

@jaschembra ask me in your own recovery thread

 

[Knees4Me]

@Josephine - Thanks very much again for your expertise and help.

I don't know if my pain levels are accurate or if I estimate them too high. It's sort of like the saying: How long is a piece of string? The bottom line is that I'm sick and tired of having chronic pain for eight months - with no end in sight!!

I forgot to specify that I never take just 500 g of Tylenol, but always a dose of 1,000 g at a time. Doesn't take away the pain, though. A couple of glasses of wine seem to work just as well, or at least make me care less! I don't want to get dependent on either, although Tylenol has fewer calories!

As for my flexion, I meant that I'm stiffer in the morning than later in the day when I've been moving around, so I can tell by eyeballing my leg that it can bend up to about 115 degrees. No, I didn't mean when pushed by a physiotherapist. My current one seemed to get no more than 110 (no pushing!). Less than two months after my TKR, the PT in the hospital's rehab facility pushed my knee back so far that it bent 126 degrees. It has never bent that much again. I'm sure she did permanent damage. Wish I could sue her!!

You have convinced me that I do, indeed, have IT band and patellar tendon issues. (It sounds as if my knee "twin" @jaschembra, who also had her LTKR on Jan. 3, has similar problem areas.) But what are the solutions? And how long will it take to be pain-free while walking, biking and going down stairs...if ever? I can't still just rest, elevate and ice all the time like I did for the first four months or so. I thought that would be all I'd need. Most people are mostly recovered by that time, from all I've heard and read from other recipients, doctors, PTs, etc. Even most people who've posted on this forum appear to drift away around then. I must get on with living my full life. I'm in desperate need of exercising for health reasons. I'm so out of shape and I'm gaining weight because I'm so inactive. My surgeon made it clear that being this much overweight stresses my artificial knee and she strongly recommended getting down to a more balanced height-weight ratio.

It's hard to find that happy medium between being active enough and healing/recovering. I thought I'd feel great by now with a functioning, pain-free knee. At this stage I'd happily trade my old arthritic knee, which didn't hurt all the time. I could also walk faster with my cane than I can now. This pain is much worse, and is absent only when I sleep. I'm far from "thrilled" with the result, as some (the majority of?) lucky people are. In fact, I wish I hadn't had this surgery. I feel I was sold a bill of goods by my GP and surgeon. I'd need to be in total agony before I'd ever have my right knee replaced.

Again, thank you very kindly for all of your replies, Josephine. You're an angel for helping those of us who've found BoneSmart and have nowhere else to turn. Medical education for patients before and after knee replacement surgery is sorely lacking, as you know. And after this many months, friends and family members think I should be better by now and are sick of hearing about my knee - just as I'm fed up with being disabled and in pain and not able to go for a walk or do other normal things. Please tell me that there's hope and this ordeal will end! (Sorry to be such a sad sack!!)

All the best,

Judy

 

[Knees4Me]

@jaschembra - Yes, I do think I'd feel and function much better if the internal swelling - or whatever it is - goes away. I wish I knew for certain what's going in in there.

Did you see Josephine's reply to the red and blue dots on the knee chart? Her descriptions certainly sound like what's ailing me, at least in part. I'd like to know how long these problems will take to resolve, if they ever do. I really wish I could take a long, knee pain-free walk. It's been years and I'm afraid it'll be never. I'm still not sure what I can do to speed up my recovery. I've tried to do the appropriate exercises, continue to go to gentle physio, rest, elevate and ice. Apparently, about five per cent of knee replacement recipients don't have a good outcome. But maybe you and I will still be okay...eventually. Hope so! All best wishes to you!

 

[jaschembra]

Judy, I truly hope and pray the day will come when this is all behind us. Granted, I get around, but like you, I feel every step. I still feel a lot of my discomfort/pain is from all the hardware in my tibia bone and my doctor told me I would feel like this longer than a normal TKR. I know my x-rays were completely fine at 12 weeks so I'm pretty confident all is well in that area - Are you still planning on getting new x-rays next month? I would. If nothing else, just to ease your mind. Yes, I saw Josephine's explanation on the red and blue dots - those seem to be the last areas of pain on me so I'm going to work on more gentle stretching for the IT band (I know it attaches near/at that area as I had pointed out the discomfort months ago to my OS). I figure around month 10 or so... if I'm still feeling this way, I'll be asking my Dr. to re-x-ray, etc. but again I must say: We are not fully healed yet. 75% of it. I'm resolved to the fact that I'm going to take extra time as I'm a sweller. No ifs ands about it - I'm a sweller. Swelling makes all the difference in my opinion. Hang in there!!! I too struggle with maintaining/losing my weight and work at it daily. It's definitely harder, but you can lose without being active. And... there are exercise moves we can do by just sitting. Have you tried chair yoga? Google it on YouTube. I've only done it once and need to do it more - but it worked and I didn't even have to stand.

 

[Knees4Me]

@jaschembra - You may be "a sweller" but you're also "swell" for posting such a kind and empathetic message on my recovery thread! I think sometimes the difference between us is that your glass is half full and mine is half empty. I must work at trying to be more positive, but it can be hard when I'm discouraged by my slow progress - or no progress!! I simply can't do what I want to do - or expected to ve able to do at eight months post op!

My pain could be at a five level too. I'm not sure, but I'm sick to death of it. I never dreamed knee replacement surgery would lead to chronic pain for this long with no relief, except when I sleep! No medical person I saw told me this was a possibility. At least your surgeon was honest with you. Mine just told me my knee was a challenge to operate on, I was "a bit behind" at six weeks (my only X-rays were fine then), I needed to work on stretching out my tight hip flexors - and I need to lose weight. And when I said yes to sitting a lot, she said "that's got to stop." She always seems to gruffly imply I''m doing something wrong! She also bends my leg and hurts me when I see her - to make a diagnosis, I suppose! That's why I'm reluctant to go back. But I will bite the bullet and go after I get my GP's advice in a couple of weeks. I keep hoping my knee will magically get better...

I do have an old chair yoga DVD. I should get it out, if I can find it! Better than nothing! And I'm with you re: gentle exercises for the IT band. I'll also keep going every two weeks for gentle massage and hip flexor stretching with my own delightful physiotherapist.

I just heard a report that doctors here will be allowed to prescribe opioids to patients with severe pain for only one week! I'm definitely not keen to have my right knee replaced if that's going to be the case!

Please keep in touch. I also hope we'll eventually come out the other side of this experience with knees that are fully functional and pain free! I'm also wondering why I have a dent in my leg that wan't there before. Does yours look the same? And do you ever wear a neoprene knee brace or cane while walking?

Enjoy these last few days of summer. I'm grateful we're not victims of Tropical Storm Harvey. My heart goes out to those people! Can you imagine?!

Judy

 

[jaschembra]

Yes! Dig out that DVD
My OS took X-rays at my first follow up which was 4 weeks and at 12 weeks. At 12 weeks to make sure my bone growth to the implants were good (cementless). I wouldn't want my OS to hurt either, but I would take the leap in order to get the X-rays.
You asked - I don't use a cane any longer. Sometimes, while outside, I use my walking sticks as I know I can get around a lot better and if I'm just tired. When I go down to my horse I have a Donjoy sleeve I bought at my doctors office but found it to be uncomfortable in the back of my knee so I revert back to my Tommy Copper sleeves. I put them on both knees.
I think my knees are addicted to ice!!
Oh, yep... my mom at age 83 wasn't taking any pain med not even Tylenol at 12 weeks TKR last summer and I thought, heck, I'll probably be less than that. I was soooo wrong lol. I'm lucky to get in 2 days of no tylenol or Meloxicam before I give in and take something.
It's tiring... I'm so over it... but what am I going to do about it. I've been writing in my gratitude journal for the last couple of weeks. I'm glad I have a leg. I pray I will be pain free. That's all us gals can do. Enjoy this weather and yes, I can barely watch Texas without getting a wet eye.

 

[SusieShoes]

I'm so sorry to hear how unhappy you are, and how you wish hadn't had the surgery. To still feel pain after so long, and after having so much hope, must be frustrating. Perhaps time will still bring better results. I'm glad you have @jaschembra to talk with. She's got the patience of a saint. The patellar tendon is a problem for lots of TKR folk. I don't have your level of pain and stiffness, but that tendon is the one making my left knee lag. It still hurts some, but not so much I can't walk and enjoy life. A little sore here and there. But my OS said that's the culprit, and he also promised me it would settle down in time. I hope yours does, also.

 

[Josephine]

I don't know if my pain levels are accurate or if I estimate them too high.

In my experience, people mostly feel reluctant to be totally honest about their pain levels and almost always understate them!

You have convinced me that I do, indeed, have IT band and patellar tendon issues. But what are the solutions?

Did you read the article I left you? Or don't you know how to use links?

And how long will it take to be pain-free while walking, biking and going down stairs...if ever?

Well to quote your own comment, that would be a "how long is a piece of string" question!

I can't still just rest, elevate and ice all the time like I did for the first four months or so.

I have never advised people to sit still all the time! That would be very poor advice!

Even most people who've posted on this forum appear to drift away around then.

Maybe but not all ! There are always a percentage of people for whom this recovery is not a straight line from A to B. And because you've been poorly advised on your exercises (which I assume you've been doing since the early days in one form or another) you now have a condition called chronic pain which is much, much harder to treat though not impossible.

I hope all this helps you to understand your condition right now.

 

[kneeper]

My PT told me lots of sitting contributes to tight hip flexors. But that doesn't mean you should be overdoing the standing and walking while you're suffering with tendon issues either.
For me, it took a long time of limited activity and listening to my body for the quad tendonitis to diminish. It's a bummer, yes, but in my experience, you can't exercise your way out of it. Overdoing just prolongs the problem. :(

 

[cnm1]

Hi Knees
I feel your pain. I have not posted in a month because I was feeling discouraged (11 wks out) In my case my knee is great, really do not think much about it. Gets achy sometimes but resolves. BUT I have haunted by piriformis muscle, IT band and NOW lower back muscle problems. I got a steroid injection 1st week of Aug in my rt hip. It has helped a lot with the hip pain - not gone but 80% better. But the pain seems to have moved into my lower back - along the sides. There is no radiation from the spine so it seems to be muscle. It started when I began walking more. I am using only Tylenol. No ice - knee does not need it and it seem to make my hip worse.
I feel strange that I complain more about other pains and not my knee. I know what you mean about it would be nice to have a day without pain. I did not have this problem with my 1st knee replacement I am doing a lot of the same stretches that you are doing as well.

 

[phrog]

Oh, @Knees4Me, I am so sorry! I tend to think @sistersinhim is right.

Our knees will heal when they heal - and sometimes that is longer than we want. I am in the same position as you in terms of pain and swelling (though I think I have less swelling than what you are describing). I am impatient, but trying to tell myself I have six more months before I need to worry.

I am six months post op and it seems to me I have more pain than I did before the surgery.

 

[Pk4tmjsd]

Hi Knees - read through your thread. Your PT experiences are dreadful. So sorry........... No need for me to add any advice or suggestions to you....... Many BS posts from people far more qualified and informed than me have shared good information - some of whom also shared with me. Wishing you peace and success as you continue to navigate these uncharted waters..... ~ Pat

 

[jaschembra]

Were you able to get in to see your OS? Any news? i hope she was able to give you some reassurance with some X-rays?

 

[Knees4Me]

Hello, BoneSmart friends Josephine, jaschembra, TKRPAIN et al.

I haven't posted for a month because I was waiting until after I saw my orthopedic surgeon today - an appointment I asked for because both my GP and my PT said mine was not a normal recovery. It was nine months ago yesterday that I had my LTKR. I was SO optimistic that soon I would have a pain-free, functioning knee after a decade of severe arthritic pain. But I'm really miserable now because my surgeon didn't give me the answer that I wanted to hear. She said, based on my X-rays today, she'll likely have to do a complete revision because the tibial tray is too big, there's an overhang and it's impinging on soft tissue, causing pain whenever I walk, stand, get up from sitting, cycle or go down stairs - even often when I'm just sitting.

Since surgery, I have had continuing pain on the lateral (outside) of my knee, in the joint, that has made walking, cycling, getting up from sitting and going downstairs very painful. I thought for the first four or five months it was all part of the normal healing process. Weekly physiotherapy and daily stretches and exercise haven't helped. Nor have Tylenol, ice or Voltaren.

I suspected this might be the problem (altho' I was praying it was not!) because when she came to my hospital room on her rounds the day after my surgery, she said my knee looked different when she opened me up than it did on my pre-op X-rays, that I "had a challenging knee to work on," that I was "bigger on the top (femur) than on the bottom (tibia)," and that she had to implant a larger tibial tray than was optimal because there was no exact match. She thought it would be okay, but unfortunately for me, it hasn't turned out that way. And, apparently, there's no guarantee that a revision will totally resolve the pain. By the way, she's a revision surgeon as well at the top orthopedic and arthritic hospital in Toronto. They deal exclusively with joints, mostly knees and hips. My GP referred me because she said it was the best place for TKRs.

These nine months have been the worst of my nearly 68 years for pain (way worse than giving birth twice!), depression and frustration. No, I can't compare myself with others, but most people who've been on this forum recover by three, four or five months, stop posting and go on their merry way. Very few of us are left posting here this late in the game.

I asked my surgeon if it's just a matter of my being one of those knee patients who takes a full year or more to recover. She said no. So much for the conventional wisdom that it just takes time, time and more time. My patience ran out about three months ago when I realized my knee was not improving at all despite weekly physiotherapy (gentle!) and daily exercising, walking and recumbent cycling - although I gave up the last two over six weeks ago because they hurt too much.

My surgeon said this morning I should just live my life (easy for her to say!) until I see her in January for my one year review. She said if my knee gets better by then, good. If it gets worse, then we have to talk about a revision. She offered no strategy for the next three or four months.

Friends, I just cannot face this ordeal again on the same leg and lose another year of my life. It's been the most painful, worst medical experience of my life. I used to think I was youthful for my age. Now I feel like an old invalid. My husband took very good care of me last winter, but he's in his 70s and has his own health issues, so I don't know if he can do everything for me again when I'm laid up.

And my severely arthritic right knee needs to be replaced soon too, because it's starting to complain loudly about having to do double duty for so long, I have found out that the knee does not necessarily heal itself, as some have said. The resident working with my surgeon this morning said that one in five knee TKR patients are left with residual pain. That's 20 per cent! Nobody ever mentioned this to me before my surgery, or I definitely would not have had it done. That's 20 per cent!!

In pre-op class at the hospital they showed us silly things like how to put on your socks with a pole. I never used that. There was no good, honest and comprehensive information. Maybe it's because if everyone considering TKR knew those stats, they'd never go ahead with these ops. Then where would all the OSs be?! Not to mentions their assistants and PTs, etc.!

Sorry to rant and complain like this, but I truly regret having this knee surgery. My arthritic pain was not this bad or this debilitating. I could walk faster and farther with my cane, and when I stopped, my knee didn't continue to hurt! I really don't want more surgeries on either leg. So I may have to endure this pain for the rest of my life....

However miserable I am right now, I want you to know that I do count my blessings - as we all should - that I and my family and friends have not been victims of a hurricane, earthquake, terrorist attack or massacre by a madman killing and wounding people with assault weapons. God speed.

I will try to be in a better humor the next time I post.

 

[Josephine]

she had to implant a larger tibial tray than was optimal because there was no exact match.

Well that was a silly thing for her to do. Everyone knows in knees, if that if the size is midway between two, you always go for the smaller one. In hips it's always the bigger one!

No, I can't compare myself with others, but most people who've been on this forum recover by three, four or five months, stop posting and go on their merry way.

Yes, but they were all problem free.

I asked my surgeon if it's just a matter of my being one of those knee patients who takes a full year or more to recover. She said no. So much for the conventional wisdom that it just takes time, time and more time.

Yes, but you were NOT problem free.

I just cannot face this ordeal again on the same leg and lose another year of my life.

Honey, it won't be a whole year again. If you get this sorted, your recovery will be better because a) there will be very little bone cutting and b) your implants will be better fitting. Thus you can expect your recovery to be much like those other members you've envied!

The resident working with my surgeon this morning said that one in five knee TKR patients are left with residual pain. That's 20 per cent! Nobody ever mentioned this to me before my surgery, or I definitely would not have had it done.

Well I can tell you he is wrong! 100% wrong! The percentage is 2% not 20! And even then there is a range of residual pain from mild discomfort to something like you are experiencing. And the pyramid of that is that most of them are the very mild ones at the bottom of the pyramid with the worst ones in the tip of the pyramid. So it's really nothing like he was implying.

 

[jaschembra]

Oh gosh, this is not news you have wanted to hear. {{{hugs}}} I know your OS doesn't have a very good bedside manner so I'm sure she wasn't the greatest in delivery. If she truly, feels that is the issue, I question why she would even be asking you to wait on a revision. Even though she is supposed to be the #1 OS and a revision specialist, I would try to seek out another revision specialist for a 2nd opinion.
I was sure glad to hear Josephine's stats of 2% and not 20%. And yes, those are some of the other members we have "envied" (I know I have).

Don't at all feel that you can't have a rant or an emotional breakdown on here regarding your knee. I think everyone here would agree we want to try and help or lift your spirits, share ideas or just to let you know you're not alone. I'm glad you came here to report your visit. Hopefully there will be some other information that will be helpful for you.

 

[phrog]

Oh, so sorry, @Knees4Me. I agree with @jaschembra - I can't understand why your OS wants you to wait three months if she is so sure you need a revision. It can't hurt to get a second opinion and doing so may answer more questions. Maybe you won't have to wait three months to get on the road to less pain. I hope you can put your feet up with a glass of wine and relax tonight. Hugs from here, too.

 

[KarriB]

I were you, I'd be looking for a revision specialist to give a second opinion way before January. A revision specialist has experience with revisions which you want going into another surgery. I'd think there would be quite a few in Toronto.