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

[Knees4Me]

@kneeper - I have continuing soreness where my quadriceps muscle and where my IT band attach to my knee. And I get a sharp pulling feeling on the outer left side of my knee joint when I turn my leg/knee in certain ways. That just started happening six or eight weeks ago. So frustrating! I'm trying not to get depressed!!

 

[Knees4Me]

@Jajakio - Ironically, my surgeon IS a revision specialist, although there are other revision specialists in the Orthopedic and Arthritic hospital where I had my LTKR. It's the best facility for knee and hip replacements (that's about all they do) in the province of Ontario and I don't know if I can switch to another doc. My health insurance does not allow me to go outside Ontario and, being retired, there's no way I can pay my own way! So I'll see what my surgeon thinks is happening with my poor knee, and what, if anything, can be done...

 

[Knees4Me]

@bland9 - BTW, my flexion is also about 110 to 115, depending on the day. I plan to keep working at it with gentle stretches over the next few months until I reach 120.

 

[Celle]

It's the best facility for knee and hip replacements (that's about all they do) in the province of Ontario and I don't know if I can switch to another doc. My health insurance does not allow me to go outside Ontario and, being retired, there's no way I can pay my own way!

I think you still have the right to ask for a second opinion. Maybe you could suggest it to your present surgeon? Even the best of surgeons sometimes miss something that is apparent to a second pair of eyes.

 

[Knees4Me]

@Celle - Yes, I could ask for a second opinion, depending on what my surgeon says. Thx.

 

[jaschembra]

{{{Good Morning Knee-Twin}}} I feel your pain and frustration. I truly do.

I agree with going to your OS to get x-rays to assure your brain that those parts are okay. Regarding the other tissue pain, etc.... I'm with @sistersinhim regarding the "difficult knee to work on" and "longer healing due to that". I may have more flex than you, however all of the discomfort/pain you are describing, I also have.

Here is my latest and greatest thoughts on my recovery and maybe this will help you too. I personally feel all surgeons give us less of the story than actual. Any foot surgery I have had (5 of them) they would describe recovery as basically no big deal and they WERE a big deal. So now with this "porous implant" I have, my OS said, I would "ache" longer. Now his definition of ache and mine are two different stories. Anyway, he said 6-8 months. Well, as you said, we are approaching 8 months and I have a whole heck of a lot of "ache" when I'm up and walking. None while sitting. So, I have decided his 6-8 months was not realistic and I'm just going to shoot for the next landmark of 12 months.

I still get swelling and of course heat (I had heat for over 6 months just on a scope, so I know I'll have heat a long time here). Swelling leads to pain. There are not a lot of posters on the forum at our stage of the game (8 months and feeling discomfort and actively posting) and most of them are feeling great now so they've moved on with life.

We will too one day (not move on from BS). We've just got to believe this. It is just going to take more patience, time, and daily uplifting of our mental state.

I would get those x-rays though - it will ease your mind (and hubby's too).

Now I have to get up because I've been sitting in the recliner over 1½ hours - ugh. But movement is good for the joint discomfort or no discomfort.

PS: I've also gone back to arthritis Tylenol every day this week (instead of skipping a few days here and there just to grin and bare it) to get a bit more relief. I think it's helping.

 

[sistersinhim]

My OS told me I'd hate him for the first 6 months. I never did hate him, but he was right about the implied pain! It was definitely still there. Even at 9 months I would still swell and have to ice. I think some of our knees had a lot more done inside than others and take that much longer to heal. Did I mention before that I'm still having zingers along with some pain on movements. So, with your challenging knee I'd say it's normal to still have pain and discomfort at less than 8 months. It does get better! I agree to go ahead and get x-rayed to be sure everything's OK. Your peace of mind is worth it!

 

[kneeper]

@kneeper - I have continuing soreness where my quadriceps muscle and where my IT band attach to my knee. And I get a sharp pulling feeling on the outer left side of my knee joint when I turn my leg/knee in certain ways. That just started happening six or eight weeks ago. So frustrating! I'm trying not to get depressed!!

I wonder if it's a soft tissue issue from that intensive PT you had. @Josephine may have some thoughts for you.

 

[Josephine]

I have continuing soreness where my quadriceps muscle and where my IT band attach to my knee. And I get a sharp pulling feeling on the outer left side of my knee joint when I turn my leg/knee in certain ways. That just started happening six or eight weeks ago.

Perhaps you would indicate where your pains are using this chart?

 

[Knees4Me]

@Josephine - Thank you so much for kindly offering your expertise. I don't have time today, but tomorrow I will study the chart and indicate my trouble spots. - Judy

 

[Josephine]

Whenever, sweetheart!

 

[Knees4Me]

@kneeper - That may well be! I'll send Josphine the info tomorrow. Thx.

 

[Knees4Me]

@Josephine - Apologies for nor replying sooner. I had a busy weekend and I've been thinking about how best to describe the pains I still feel in my left knee, eight months (this coming Sunday) after TKR surgery. According to the chart:

LF4D - Much of my pain is in the lateral side of the knee, around - or in - the joint, especially when I bend my leg. It particularly hurts when I walk, stand up from sitting, walk down stairs or bike. When I try to ride the recumbent bicycle in our condo building's gym, I have to hold the outer side of my knee with my hand to avoid a sort of grinding feeling as I make each rotation. The pain level with cycling is about 4, until that evening, when the irritated tissues make it about 6. Walking is worse - about a 7, even with my cane. I've given up going downstairs normally, which is at about 7 - and slow! And a couple of times when I tried to take about a 20 min. walk without my cane, I had to ice my knee when I got home, that evening and the next day. So I just don't walk much now and don't get much exercise. My PT has long thought the cause is my IT band , where it attaches to the knee, but the typical exercises to relieve that haven't worked. Also, when I turn certain ways, I get a brief, sharper pain in the mid-lateral part of my knee joint (about a brief 8), if that makes sense.

At the top left side of my knee, I have about a 1" spot that has been swollen and tender underneath, and has been since my surgery. It feels like a hard, sharp bone underneath. The surgeon, my GP and my PT don't know what it is and say to ignore it. There otherwise hasn't been perceivable outer swelling of my knee for about three months.

LF4E - Even when I'm sitting, with my knee straight or bent, my knee is uncomfortable and pain is at about level 5. It seems swollen under the skin below my kneecap (not right underneath it) to the center. My very gentle physiotherapist, whom I see every other week to keep me mobile, thinks that sore spot may be where my quadriceps attaches. She suggested that I gently massage it.

It seems I've had some degree of all these pains since Jan. 3. Although the intensity of the pain and discomfort has subsided - very slowly - I have not had a pain-free day since Jan. 2. I had physio twice a week for two hours each week from one week after surgery until the end of March. The PTs were the type who bent my leg painfully under the table to try to get it to bend further every time. They insisted on doing it even when I said the outside of my knee was painful. They threatened to call my surgeon, whose office is upstairs and who prescribed this physio, to report me as "uncooperative." I don't know if that PT did permanent damage - or my surgery was "bungled." My surgeon told me post-op that she'd also straightened my leg! Would straightening cause a longer, more painful recovery?! She also mentioned three times that I should work on getting to a better "height-weight ratio." I lost 20 lb. post surgery since the pain made me lose my appetite, but half of that has come back. i''m about 40 lb. above my ideal weight. Would that cause my post-op knee problems?

This is all very frustrating, because I cannot determine whether my continuing problems are from soft tissue, e.g., IT band, muscles such as my quadricep, tendons, scar tissue, adhesions, nerve damage, etc. My GP, who talked me into a TKR, says mine is not a normal recovery, and if the artificial knee was causing my problems my pain would be worse. She said maybe I "just need to work through this phase and look at the long game." But I have not experienced any noticeable improvement or healing for a few months. I've read on this forum that some knees take a year to heal, but I can't imagine being back yo normal in another four months or so.

By way of background, my surgeon told me after surgery when I was still in the hospital that I "had a challenging knee to work on." Apparently when she opened me up, it looked different from the X-ray, so she had to change the original surgical plan she had for me. I saw her at six weeks and she said I was "a bit behind" because my flexion was only 100 degrees (my extension has always been 0.) I saw her again at 12 weeks and, when I told her I expected to be much more recovered than I was, she said my expectations were "too high." Since then, my flexion is 110-115, depending on the day and how warmed up I am. (I would like to eventually get to 120 for functionality, which I'm hoping will happen as my pain decreases.). At 18 weeks, I saw only the "advanced care physiotherapist" who works with my surgeon. She said I could expect pain at five months and to take Tylenol Extra-Strength 500 g., which I still do, and use Voltaren. She also told me to wear a neoprene brace on my knee when I cycle. After that, my only other follow-up appointment is for the one-year mark. But should I call the surgeon's office sooner to ask if I can get X-rays taken and see the surgeon in case something is amiss with my implant? Or do you think it could be just soft tissue that's still causing me grief and I should just "work through it" and wait to see the surgeon in January?

This outcome is such a huge disappointment. I had the LTKR to get rid of the severe arthritic pain (bone on bone) that I'd had for about 7 years and so I could walk normally again. But I can't. My husband has even started telling people that I'm an invalid. My right knee is severely arthritic too, but there's no way I'd agree to have it replaced after this ordeal. It's the worst health care experience I've had in my nearly 68 years. I wish I'd never had it done. I never dreamed I'd end up with chronic pain! I'm really trying not to get depressed. (One blessing: knee pain no longer wakes me up at night.)

I'm terrified that I will need a revision, although my GP says "there isn't a hope in he__" that my surgeon will redo the TKR. And it's highly unlikely I can get another surgeon since the hospital where I had my surgery specializes almost exclusively in knee and hip replacements and the surgeons there do revisions for people who've had botched operations elsewhere, from far and wide!

I know every knee is different and it's difficult to make a real diagnosis on the Internet, but I know you have a career of expertise, so I would be most grateful for your opinion and advice, whenever you have time, dear Josephine.

Sorry I've written so long, but I really don't know where else to turn right now.

Many thanks.

Judy

 

[Josephine]

LF4D - Much of my pain is in the lateral side of the knee, around - or in - the joint, especially when I bend my leg.

I would imagine this is an ITB (ilio-tibial band) issue.

LF4E - Even when I'm sitting, with my knee straight or bent, my knee is uncomfortable and pain is at about level 5.

That's probably a compartment syndrome issue.

At the top left side of my knee, I have about a 1" spot

For this, can you give me a chart reference?

They insisted on doing it even when I said the outside of my knee was painful. They threatened to call my surgeon, whose office is upstairs and who prescribed this physio, to report me as "uncooperative."

Oh yes, the old 'threat, threat, threat, protocol! Take no notice. He has the right to say no and to decide what he will and will not do. "uncooperative" doesn't come into it! Saying no to therapy - am I allowed to?

My surgeon told me post-op that she'd also straightened my leg! Would straightening cause a longer, more painful recovery?!

Could do though not always.

I'd really like to offer you some structured advice but in order to do that, I also need to ask you some questions. Are you willing for me to do that?

 

[Knees4Me]

@Josephine - Thanks for your quick reply. And, sure, fire away! I'll answer anything!

Regarding the possible compartment syndrome, I think that would be lower down my leg. That pain I described is under the skin at the front centre of the leg, immediately at the bottom of the patella - LF3/LF4. It feels hard, though my PT says it's getting "looser" and it is sometimes warm (so I ice!) Could it be the medial collateral ligament? (I don't know knee or leg anatomy, but I'm doing research on the internet because I want to know what's causing this continual pain that I can't escape from!)

My surgeon told me shortly after surgery that my knee required a tibial tray that was between the large size and the small size she tried, so she put in the smaller one. She said I was "bigger on the top than on the bottom." Do you know what she meant by that? I was still in hospital and so doped up at the time that I didn't have the wherewithal to ask what she was talking about. Somehow I thought she meant my thigh was bigger than my calf! Duh!! Would a tibial tray that doesn't fit exactly irritate the soft tissues and cause prolonged pain?

As I said in another post, I feel that an alien is trapped inside my left knee and can't get out!!

 

[Knees4Me]

@Josephine - Sorry, I meant DLF3/DLF4 ( I think). And I forgot about the puffy tender bit, which is CLF4, by what I can tell from the chart. (I have fatter legs.)

 

[Josephine]

Regarding the possible compartment syndrome, I think that would be lower down my leg.

Did you read the article?

As I said in another post, I feel that an alien is trapped inside my left knee and can't get out!!

That's not the implants, it's just the swelling and pain!

My surgeon told me shortly after surgery that my knee required a tibial tray that was between the large size and the small size she tried, so she put in the smaller one. She said I was "bigger on the top than on the bottom." Do you know what she meant by that?

You knee replacement looks like this, with a femoral component, a tibial tray and a plastic spacer in between. There is an optimum size for the spacer but sometimes the measurement falls between to two. But the difference between them is only a few millimetres so it's not critical if it falls between two. In these cases, the surgeon will always opt for the larger of the two because it's known that this is the best way to go. Considering it's only going to be a matter of 2-3 mm there really wouldn't be any discernible differences that the patient would be aware of.

sure, fire away! I'll answer anything!

Here y'go then!

It would be very helpful if you would answer each one individually - numbered as I have done - in as much detail as you can then I'll come back as see where you are ....

1. what are your pain levels right now? (remember the 1-10 scale: 1 = no pain and 10 = the worst you can imagine. And don't forget to factor in other forms of pain such as soreness, burning, stabbing, throbbing, aching, swelling and stiffness).

2. what pain medications have you been prescribed, how much are you taking (in mg please) and how often?

3. how swollen is your leg compared to these?


4. what is your ROM - that's flexion (bend) and extension (straightness)

5. are you icing your knee at all? If so, how often and for how long?

6. are you elevating your leg. If so how often and for how long?

7. what is your activity level? What do you do in the way of housework, cooking, cleaning, shopping, etc., and

8. are you doing any exercises at home? If so what and how often?
This is the most crucial question so please help me by using the format I have left as an example
(which means please make a list and not an essay!)

Exercises done at home
- how many sessions you do each day
- enter exercise by name then number of repetitions of each
etc., etc.

Anything done at PT
- how many times a week
- enter exercise by name then number of repetitions of each
etc., etc.

 

[Josephine]

by what I can tell from the chart. (I have fatter legs.)

(don't we all!)

DLF3/DLF4 - CLF4

Like this?

I'll opine on this when you've answered my questions!

 

[Knees4Me]

@Josephine - Yes, the blue and red you added to the chart seem to be in the correct places.

Next, I'll answer your list of questions.

 

[Knees4Me]

@Josephine - I'll do my best. (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!)

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.

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. 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.

3) Swelling is slight now, but it was substantional 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. (Scar seems fine - it's the least of my worries!) 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?

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.

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

6) My activity level is low for this far out from surgery. I gave up going for walks and recumbent biking because of the pain. I do a bit of gentle stretching. But even now, when I do knee slides, the lateral side of my left knee joint produces a sharp pain when I straighten my leg. I went back to driving after about three months and have been doing some grocery shopping a couple of times a week. I occasionally take our old dog out to walk a bit (she's not well and needs to go out about every 90 minutes!) I've been to dinners, my book club, an opera and a play and a couple of movies. I've been on the subway once to go to my GP (via escalators and elevators because going downstairs is still too painful.) I rode in the front seat of the car a couple of weeks ago when my husband and I took my sister-in-law and her husband who were visiting from England on a day trip to see Niagara Falls. Luckily, I took my disabled parking permit with me, so we got close! And stopping at a winery restaurant for lunch on the way back seemed to help with my knee discomfort. Strangely, sitting in the car for hours with my knee mostly at a right angle seemed to stretch it out!

To sum up, I'm trying to live a mostly "normal" life without overdoing anything. I'm almost resigned to never again being able to walk, cycle or go down stairs normally and without any pain.

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!

8) At home: IT band exercise leaning against the wall with legs crossed: 2 - 3 X/day for about 45 secs. each time
- hang leg over side of bed to stretch out IT band, x2/day about one minute each time
- flat on back on bed, cross left leg over right leg to stretch IT band
- knee slides about 2x/day - 10 to 20 each time
- foot on step, bend past 90 degrees - 2 - 3x/day - 10 - 12 each time
- so far, these exercises haven't worked to reduce pain..

I have a hard time judging how much exercise, if any, is beneficial to my knee - and how much is too harmfulness, especially after my very negative experience with three months of post-op rehab PT.

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!)
- Quadricep stretching with me lying on my stomach and pushing my foot against her shoulder
- Knee slides - 6 or 8 (fewer since she stopped measuring my flexion)
- she also helped me regain a normal gait and helped me walk without limping (which I can do, but it's painful)

We have a pool in our building, but I haven't used it yet. Maybe I should start!

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! So far, I've been able to fend off depression! But it's hard! My husband and I had planned to go on a dream vacation to Hawaii, but my left knee is not recovering properly and my arthritic right knee is next in line for a TKR. (I originally thought it would be done in June and I'd have two normal knees again by this coming Christmas!) So all travel plans are on hold for the foreseeable future...

Sorry, Josephine, It appears that I've written an essay! My adult daughters say even my text messages to them are "novels". (I've earned a living from writing for nearly 50 years!)

Thanks so much for any info and advice you can give me. I appreciate it more than you can know!

Judy


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