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

Today I had a 18-week (4+month) follow up at the hospital with an "Advanced Practice Physiotherapist," not my surgeon (although she was available in the same clinic if the PT thought I should see her.) I was dreading this appointment because I still have pain when I walk, go up and down stairs and exercise. But the therapist said it was still early in my recovery and I 'm doing well. She said pain at this stage isn't unusual and I should continue to do specific exercises, which she showed me, to target my still very tight quadriceps and hamstring. She said I need to get at least 150 minutes of exercise per week for aerobic health, such as walking or cycling (including stationary cycling.) I did some stretching before I went to the appointment today. My ROM is 110 and my extension is 0, as it has been from the start. The PT told me to aim for 120, which she called "the magic number." I only take Tylenol Extra Strength or Tylenol for Arthritis when I need it - and I still ice and elevate. I don't have to go back to see my surgeon until my one year checkup next January. If my left knee is totally functional by then (I hope it is long before that!), we will discuss scheduling total replacement surgery for my arthritic right knee. (Ugh!) In short, I feel relief that I don't have any serious medical problem with my new knee, but I am not yet thrilled with my replacement. My recovery has seemed as slow as molasses in January! The PT told me today not to think about those people who seem to have very fast recoveries and are totally back to normal in six weeks! She said the fact my surgeon had to realign my leg may be contributing to my slow recovery. I said the last thing I wanted was revision surgery on that knee, but she said I wouldn't. What a relief! I'm lucky that my husband and I are retired and he has been able to drive me to appointments, as well as being chief cook and bottle washer! I have the luxury of not having to return to work, thankfully. But I am continuing to see my own, gentle, physiotherapist once a week to help with flexion and gait. I'll post my progress in another few weeks - and hope I can report that my pain has subsided, my swelling has gone and my flexion has increased! Best wishes to all participating in this forum, whether patients or support people. I've learned so much and found comfort in "the dark days," which are now firmly in the past, thankfully! I guess my message is that for some of us, it really is a marathon, not a sprint... but we'll all eventually cross the finish line! - Judy
 
Good to hear from you. I was wondering how you were getting along.
 
I rode my recumbent stationary bike nearly everyday and found it helped loosen my knee a great deal.
 
@KarriB - Yes, the PT I saw today said it's beneficial to start an exercise session by warming up and stretching your knee on a recumbent bike. I feel lucky we have one in our building's gym! I still have a sore spot on the outer part of my knee and I press my fingers on it so I won 't have pain when I'm peddling. The PT said it's okay to wear an elasticize knee brace while exercising. I'll shop for one tomorrow.
 
I'm glad you were reassured by your check up visit, Judy. It sounds to me as if you are having a normal recovery.

Don't forget that complete recovery takes a full year, so you are only about 1/3 of the way there. Your knee has plenty of time to continue to improve. It's still a "work in progress", even though recovery seems to have gone on for ever.

The people who have a complete recovery by 6 weeks or so are few and far between. Most of us plod on through a slow recovery.
 
Hi knee twin. Hope you are seeing/feeling some improvements in this marathon.
I tend to not look at my days or weeks, but way into the future when all is feeling wonderful and I look way in the past at the things I couldn't do after the TKR and can do now.

I too was hoping to get my other knee done this summer but early on I knew I needed some normalcy before going back into it (I've canned 3 cases of pickles this summer!). Hoping to do the other knee as a repeat of this one. Jan. 2018!! :)
 
Hi, Knees4Me. My surgery was about two months after yours, and I think I am at about the same point you were when you wrote your May 10 post. I have more ROM than you had, but still have soreness on walking and normal activities - and pain going downstairs. It raises my spirits to read that pain at this point is not unusual. My surgeon tells me that, but it's nice to hear it from those going through it. Looking forward to reading that your recovery remains on target -
 
@jaschembra - It's interesting that you're looking past where you are today, into the future. I saw my family doctor last week, and she said I need to work through this frustrating stage in my recovery (which she says is not typical) and look at my "long game." But this IT band syndrome is so painful that even walking and the stationary bike are painful right now. I feel I'm going backwards and have to ice my poor knee twice as much as I was doing a month ago. I still use a cane except around the house - and going down stairs hurts too much. My ROM is still 0 extension and 110 flexion. I'm sure my bend will improve if this IT problem ever gets resolved with physio and exercises. I said to my GP that I fear having to go back and have my left knee redone. She said, "not a hope in hell," unless I fall on my knee implant, am in an accident or get an infection. So I guess I'm in it for the long haul!
I don't see my surgeon again until January. She said we'll discuss replacing my right knee then, depending how functional my left knee is. But, like you, I like the idea of having the surgery early in the new year so the worst is over in the winter. I'll post any IT band progress, but the marathon definitely continues!

@phrog - Yes, it is reassuring to read that others are having similar experiences, although most of the people who had TKRs around the time Jaschembra and I did (January), don't seem to be posting here anymore, so I assume they've had quicker, smoother recoveries - lucky ducks! I know we're not supposed to compare, but my subject line still applies. I didn't think I'd have chronic pain at nearly seven months! I take extra strength or arthritis Tylenol, use Voltaren and still elevate and ice every day. I was told at my last follow-up that pain at five months was normal, but I was under the impression before surgery that I'd be almost back to normal by three months. Many people are. I hope my other knee doesn't have such a long, disabling recovery. And I hope this first knee does get better! Sometimes I think that's never going to happen...it's already been soooo long!! I don't think I can stand having constant pain for an entire year!

I haven't really been posting much lately, but I really needed to rant today as I ice - again! Thanks for 'listening'!
 
I was feeling my IT band pretty much until just recently. I did stretching exercise for it nearly everyday. I too ice and elevate every day, multiple times a day. You are not alone. Regarding your GP saying it wasn't the norm - I would disagree with that statement based on all the different recoveries. My OS told me when we discussed my surgery that with younger people he likes to use the porous implant and that the downside was: you ache (we know the definition of ache to the dr is not the same as my definition!) longer. He said 6-8 months. I can understand because of the additional hardware that is drilled into my tibia. But the muscular stuff occurs with each replacement and we just have to wait it out. I know we can't compare and I know too that I have a little jealousy as well for those folks who don't swell and recover quickly - but I am thrilled for them. Can I ask your age? My OS visit is not until Jan as well but I am seeing him next week for the other knee. figured I would toss in a couple comments about the ache (I'm not 100% this is the way I'll go in Jan. - I need to have all this discomfort gone first). Im glad you're still getting a PT involved to help with your IT band and walking. Have you tried a massage as well?
 
On the day my OS and I set the surgery date he told me it would be a full year before I felt 100% recovered. Does it happen earlier for others, yes. But on the same note I think it could take longer for others depending on the recovery. I didn't plan our normal vacation that year because of my TKR, even though it was done in Oct. I do hope your IT issues resolve soon.
 
Knees4Me said:
I know we're not supposed to compare, but my subject line still applies. I didn't think I'd have chronic pain at nearly seven months! I
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It's so hard not to compare. I'm sorry it has been such a rough recovery for you, and understand the frustration of not being where you expected to be. I think your subject line describes what many of us have experienced. I had no idea that recovery would be so long. I thought 3 months and I'd be taking my grandson to Disneyland -- but that certainly isn't where I was on the first of June. I am five months post op this week and still experiencing heaviness in the leg and difficulty going down stairs (though less going up). Also pain on getting out of a chair and such soreness the day after exercise! I too had IT Band issues and they still pop up if I overdo (I try not to overdo, but I'm not always a good judge of what will bring the soreness). I have resigned myself to the idea of six months to year. It's still hard, though, when well meaning people (2 at my nephew's birthday party this weekend) tell me that they had knee replacements and what I am experiencing is not normal. I will see the surgeon again in early September and hope I will be in a place where we can discuss whether to do my other knee (he mentioned doing them both at once last January and I said no). If we schedule it, I want it to be AFTER I take my grandson to Disneyland next summer so that I'm not disappointed again. I hope things have gotten better for you in the last week and that the PT is doing massage for you on that IT band. That was the most helpful thing PT did for me. If knowing you're not alone in what seems like a slow recovery helps, here I am.
 
@KarriB - Thanks for your encouragement. We won't be going to Hawaii in January, as we'd planned. I just get too much pain when I try to walk more than a short distance. I'm wondering now if it really is an IT band problem. I hope I'm not one of those people with painful adhesions that need more surgery! My surgeon told me soon after my operation that I had a "challenging" knee to work on. So my best hope that I'll just take longer than some to heal to the point of no pain. But I hope it doesn't take longer than a year!!
 
@phrog - Thank you so much for your sympathetic post. It is good to know there are others in the same slow healing boat! I, too, still have heaviness in my leg and have trouble (pain and stiffness) going down stairs. And my knee still hurts getting up from a sitting position. I was at (gentle!) physio today and I'm beginning to wonder if my problem really is my IT band...or something else. My GP says "there's no way in hell" the surgeon will do a revision on my knee unless I have an infection, fall on it or I'm in an accident. I know the hospital where I went does " open lysis of adhesions." I hope I won't need that! I highly doubt we'll be traveling to Hawaii in January. But we may go for a week to a resort in the Caribbean just to relax before my one year check-up with my surgeon that month. Like you, I thought my left knee would be functioning normally by three months - or close too it. It'll be seven months next week! When my doctor talked me into this knee replacement, I had the impression that it was almost a miracle that would release me from the pain and disability of advanced arthritis and I'd be doing everything normally "in no time." Now I hate it when people use that phrase! I'm in more pain than I ever was before surgery, walk more slowly - and I still need my cane! I am SO frustrated by this, as I'm sure you are too!! Please keep posting your updates. Best, Judy
 
It does seem frustrating that things are taking so long, but try to remember that complete recovery takes a full year. There's still time for improvement, because your knee's only just over half way to full healing and where it is now is not where it's going to end up.

I don't know why surgeons don't tell you to expect a long recovery - probably they think it would put you off the surgery - but I think it does you a disservice. It creates unrealistic expectations that lead to worry and disappointment.
 
@Celle - Thanks so much for your encouraging words. I do hope I'm just a slow healer and all will be well by my one year checkup. But I also read so much here about MUAs, adhesions, arthrofibrosis, revision, etc., etc. that I'm getting nervous that something is very wrong. My GP - who is a great proponent of TKR - said my recovery is not a normal one. And I notice that most people whose surgery was at the beginning of January are not posting on this forum any longer, unless they're having their second knee replaced. I fear I'm in the five or ten per cent of people whose TKRs go wrong! I just don't want more surgery on my left knee before I need to have my right knee replaced, which was originally supposed to be done last month! After this experience, I'm not rushing into it, though...not until I'm totally pain free and my left knee is functional. Every day for nearly seven months I've wakened thinking to myself, "Maybe this will be the day I finally have no pain." No dice!! Our condo building's concierge says his mother had her knee replaced three years ago and she still can't get out of bed without taking Tylenol and she has pain when she walks. Apparently, her surgeon said her knee implant is fine and she just has to exercise. I ge the impression that some orthopedic surgeons don't care about the patient after they've done their job: the operation!! Sorry to sound so negative, but this pain and disability is so frustrating and my family is so over my being in pain and not being able to do a lot of things I could do pre-surgery!!
 
Knees4Me said:
I get the impression that some orthopedic surgeons don't care about the patient after they've done their job: the operation!! Sorry to sound so negative, but this pain and disability is so frustrating and my family is so over my being in pain and not being able to do a lot of things I could do pre-surgery!!
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And you're quite right! Some surgeons are really good at surgery, but have no idea what recovery is like.

I totally understand your frustration.

I think it might be a good idea to look for a second opinion about your knee, from a surgeon who specialises in revisions and problem knees. That doesn't mean you need a revision, but these surgeons see problem knees every working day and thy can often spot a problem and suggest a solution that has eluded the original surgeon. You'd need someone who has no connection at all, either professional or social, with your current surgeon, so that you get a completely independent opinion.

You may find that it is difficult to get an appointment with another surgeon until it is at least a year after your TKR, but there's nothing to stop you looking now. Start by using the "Find a Clinic" button at the top of the page. When you have a list of several "possibles" phone their clinics and ask if they specialise in revisions and if they would be prepared to see you. You will probably have to go out of town to find the right person.

Your condo concierge's mother probably also needs a second opinion - her recovery isn't normal.
 
My TKR hurt for months after my surgery. I took a deep breath before getting up from a chair and I was a first grade teacher, lots of up and down. The pain was different from pre-surgery, but I felt that the pain may have been due to my complications, so I just sucked it up and kept moving. Strangely my knee began to feel better (more like a part of me) when I began walking more in small segments. Have you thought of giving PT a break for a while and just concentrate on living your life and maybe take a short walk every day along with a short ride on an exercise bike? Walking is great for flexion/extension and biking really loosens up the knee. I've truly changed my opinion on PT (and I had a good PT) in the last year because of how my knee has reacted to walking. Since I began walking my knee hurts less and I can stand longer without being in pain from both my natural knee and TKR.

It can't hurt that to get a second opinion and it may actually answer some questions for you regarding pain, but it also can't hurt to change things up a bit and see how your knee reacts.
 
@Celle - I think I'm kind of stuck here in Toronto since I had my surgery at the premier hospital exclusively for hip and knee replacements where the surgeons do most of the revisions for artificial knee recipients far and wide. In rehab at this hospital I met many other patients who'd had their knee replacements at other facilities, both in Toronto and around the province of Ontario. There's really no other facility that comes close. I may ask to see my surgeon in September although my one year checkup isn't until January. For my five month checkup I saw only an "advanced care physiotherapist", not the surgeon. She told me to wear a neoprene knee brace, continue physiotherapy to work on my tight hamstring (which I'm doing) and take Tylenol. My flexion was 110 and my extension has always been zero. I may ask to go to the pain clinic. Maybe I'm just a baby!
 
@KarriB - Thanks again for your sage advice. I do have a recumbent bike in my condo building, which I was using, but my knee actually was more painful afterward. Same with walking and trying to go downstairs. That's why my physio and I thought it was an IT band problem. Typical symptoms. So I stopped the bike and started to drive everywhere, except for walking very short distances (e.g., the mailroom and around grocery stores.) And my PT was away so I didn't have our weekly sessions for a while. It made no difference. I actually like her gentle massage. She never pushes, unlike the torturers at the hospital's rehab early on (starting one week after surgery), which I suspect may have injured me!! I want to stay mobile and keep my 110 flexion, or even improve it gently and gradually, hopefully to the "magic number" of 120 degrees. I guess I'll just have to hang in there, hope for the best... and prepare for the worst!
 
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