TKR One Year Out

[marmarmish]

I am sooooooo conflicted!!!

I had an app't this morning with the PA for my orthopedist. He was not happy with my ROM and I got the usual story that I have only 2 weeks left (to be within the 3 mos. window) for achieving my ROM and getting MUA. I told him what I've read about people often getting more ROM as the year progresses, and even getting MUA later too if needed. He refuted that and said you may get a little more ROM, but most of it will come within 3 mos. Further, their office doesn't do MUA after 3 mos. because of concern of breaking a bone or something. (Just as a note, this doctor has a stellar reputation in our area.)

When I got home I Googled, "can you get improved ROM after 3 months", and "can you get MUA after 3 months". Very little came back. Most everything said the same thing - that which we've all heard over and over.
I did however, find some articles on the National Library for Medicine website. (I'm not sure if I'm allowed to offer them here, but I have seen links for this website on other posts so I think they are okay, being it's a reputable site.) But these were the ONLY articles I found that supported long term improvement.

Time-dependent improvement in functional outcome following LCS rotating platform knee replacement: A prospective longitudinal study in 50 patients

Long-term follow-up studies after total knee replacement (TKR) using an LCS rotating platform have shown survival rates of up to 97%. Few studies have evaluated short-term functional outcome and its improvement over time. We determined the time course ...

www.ncbi.nlm.nih.gov

"Most of the expected improvement in pain and function is achieved at 6 months postoperatively, but some further improvement can be expected up to 2 years postoperatively. ROM will also gradually improve up to 2 years after TKR, and reach the same level as before surgery."

Efficacy of manipulation under anesthesia beyond three months following total knee arthroplasty

Stiffness after total knee arthroplasty (TKA) is often treated with manipulation under anesthesia (MUA) to improve range of motion (ROM). However, many authors recommend against MUA beyond 3 months after TKA. This study investigates the timing of MUA ...

www.ncbi.nlm.nih.gov

"Early and late MUA resulted in statistically equivalent gains in ROM, regardless of timing after TKA. All groups showed an average improvement in ROM of ≥11°. MUA performed beyond 3 months, and even beyond 1 year, appears to be safe and may improve ROM ..."

This forum refutes the belief about "the 3 month window", and there have been many folks describing their personal stories of successfully achieving ROM much later. Indeed, I've even read stories from people saying their own doctors told them not to get hung up on this 3 mos. window business.
But is this occurring only for just a small percentage of people? If not, why don't we hear more about this? You'd think on this whole world wide web, there would be more acknowledgment of this alternative narrative and they'd be getting noticed by the industry, and doctors would start changing the way they look at all this! But they haven't.

I'm just so confused! Outcomes from MUA aren't always successful, and can even be detrimental.
But what if I don't do it and end up with a leg that I can't even ride a bike with, as the PA has warned!?

My gut is telling me to go with what I read so often on this forum and the NCBI articles above, and trust that my body will find it's way and give me my ROM. It's just soooooo scary to not do what the medical establishment is telling you to do!

 

[sistersinhim]

That is so untrue. Don't stress about it. Your bend can even improve for 2-3 years. There is no window of opportunity. For some reason, many OS, especially in the States, want to do a MUA when it's unnecessary. Maybe it's a money thing, or maybe that's the way they were taught years ago. But, with our tens of thousands of members through the years we know that ROM improves long past what many PTs and OSs think. You have been doing OK. Don't let him bring you down. Just keep doing what you have been doing and you will be fine.

 

[benne68]

Oh, @marmarmish, I'm so sorry that PA made you feel bad about your recovery. I don't know what decade he studied in, but he clearly is not current on the research.

This window of opportunity for ROM is a myth. Most of us find that ours continues to improve -- a little at a time -- over many month. I even gained flexion in my second year!

Please check out this article: Myth busting: "window of opportunity" in TKR

We have members who were told the same thing that you are hearing, who decided to ignore the threat, and went on to have great recoveries will stop be and weigh in. If you'd like to read one, check out JusticeRider's rehab adventure.

​

 

[Jockette]

But what if I don't do it and end up with a leg that I can't even ride a bike with, as the PA has warned!?

Here is another example:

This is what one of our members, TortiTabby, experienced:

(Just so you know, ADL means Activities of Daily Living.)

“At my six week appointment this is what my OS wrote in my visit summary: "She reads an online website called Bone Smart which states to not push through pain following knee replacement. If she were to follow this direction, she will have to learn to live with a knee that only reaches to 85 degrees of flexion. I believe this website is very misleading."

It has now been 20 weeks and all I do is ADL and this is what my ROM has done:
3.5 wks: 75
6 wks: 85
7 wks: 90
10.5 wks: 95
14 wks: 100
17 wks: 105
20 weeks (where I am today): 110
I am so thrilled it keeps improving and improving and I know now that I will get to my goal of 120 (or even better, dare I say!)


And,

“Just an update for those who are apprehensive about gaining ROM:
It has now been 26 weeks and all I do is ADL and this is what my ROM has done:
3.5 wks: 75
6 wks: 85
7 wks: 90
10.5 wks: 95
14 wks: 100
17 wks: 105
20 weeks: 110
26 weeks (where I am today): 120!!!
I did it! My goal of 120! No "pushing through pain", no PT after the first 3 visits, and most importantly to me: No MUA! My surgeon who said I would never get beyond 85 ROM without pushing through pain was wrong, wrong, wrong. I'm excited to see if it gets even better. “

 

[Jockette]

This is the last entry in TortiTabby’s thread:

Hello all, I'm closing in on ten months post surgery and I feel like I'm finally at the point where I'm not thinking about my knee all the time. I'm guessing my ROM is around 125 or so. I can walk up and down the stairs without the handrail (although I keep my hand hovering above it - just in case ).
This sure has been one looong recovery. I encourage everyone to be especially kind to themselves and their knees and listen to their bodies.

Thank you all at BoneSmart for getting me through this trying past year! I don't know what I would have done without everyone's encouragement. Peace.

Here’s her thread if you want to read it. It‘s an older one, so no need to post on it, she hasn’t been back here since August 2021. But, it’s a good read, if you have the time.

TKR - TortiTabby's recovery

Hello all. Reading through the forum has really helped me these past couple weeks. I received a total knee replacement on my right knee on April 26th and am now in week three of recovery. I work full-time and have a job where I am mostly seated at a computer. Today is my first full day of work...

bonesmart.org

 

[Layla]

Not to pile on, but I am leaving a post of JusticeRiders in case you don't have time to read through her entire thread. The post is in regard to ROM.

JusticeRider posted this -
"I just want to add, for all those coming along, a note on ROM. I want to share this because nearly all of us have a tremendous amount pressure put on us to increase our ROM by certain deadlines, or else.

Mine has been extremely slow coming. First I had to wait out the swelling, which in my case took more than 5 months. Yes, months. At that point I began to see real progress. It has continued to this day. I have seen improvement in the last 2 weeks. It’s still going. A this point I think the limiting factor is tight muscles, ligaments, and tendons from 3 yrs of very limited ROM and actually about 25 yrs of somewhat limited ROM. Those tissues are slowly stretching.

I have had to be willing to let my flexion improve at a glacial pace, be very patient, and tune out the dire warnings of my surgeon, PA, previous PT, and some well meaning acquaintances. I refused painful PT and refused a MUA. I have absolutely no regrets. I know my body, and I believe those things would have caused a domino effect of swelling and pain that may have derailed my recovery long term and even possibly have torn soft tissue, etc. I now know I have the added challenges of hypermobility and an immune condition that causes an inflammatory reaction. I think a MUA would have been very harmful to me.

Instead of forcing it, I have relied on weekly massage and using my stationary bike as a stretching aid every single day. I have been very active, but I have ramped up really, really gradually. I have not measured my flexion, because honestly I feel almost a PTSD type of reaction around it. All I care about is function and what I can do. My knee is very functional now, and still improving. I love my new knee. I’m glad I let it heal on its own timeline even though it was so much longer than everyone (most of all me!) would have liked."

 

[marmarmish]

Thankyou everyone for your support!!

I love how JusticeRider said she doesn't measure her flexion because she has a PTSD reaction to it! Haha! So true!

If anyone knows of research papers around this issue, I would soooooo love to see them. It just boggles my mind that the medical community is holding fast to this 3 month myth??? I just can't help asking myself, "Is there something to it?"

I'm sorry, I don't mean to keep circling back! But I'm sure you can appreciate how confusing and scary this can be. People like me don't have the knowledge or experience to come to any conclusion with confidence. For now however, I am not doing the MUA, and I am going to keep on doing what has been recommended in this forum. I will post again with my progress. (I'm committed to posting until my journey has ended, for those coming along behind me. I have found this to be an invaluable resource. It's a shame to follow someone's thread and they just drop out, and the reader doesn't know how they made out.)

 

[Layla]

It just boggles my mind that the medical community is holding fast to this 3 month myth???

The medical establishment as a whole has gotten things wrong over the years and should not be taken as the last word on all health practices. There certainly is a place for doctors / medical professionals in our lives, but personally I feel it is our responsibility to do our own research, just as you are, then go with your gut and make the decision you feel will be in your best interest.

Thank you so much for sharing your journey with a plan to continue. I am certain it will benefit someone following behind you. I wish you the best as you weigh out options and make decisions. We're here for support always!

 

[sistersinhim]

It's a shame to follow someone's thread and they just drop out, and the reader doesn't know how they made out.)

Most of the time the member is much better and gets on with their life. That's normally why they are no longer here.

I think you will be happy and fine to not have the MUA.

 

[Jamie]

I think your approach to your knee is a good one. Hang in there and do what feels right for YOU. We definitely do have BoneSmarties who have gained additional ROM and resumed their normal activities beyond the three month mark. In fact, most people (me included) didn’t feel like they were getting back to normal until at least 6 months out from surgery….and even more so at the 1 year mark. There are so many variables that impact all this - your knee’s condition prior to surgery, the surgeon’s expertise, how much tissue manipulation was done, the length of the surgery, and much more.

It’s always sad when trusted medical professionals insist on this “do or die” rhetoric, assuming that everyone heals at the same rate and in the same way. There are many, many surgeons out there who don’t approach recovery this way. What we’ve learned from tens of thousands of patients here on BoneSmart is that every recovery is unique and, for some people, a slower approach is better with less pain, swelling, and inflammation. This is especially true for knees.

I suspect one should “follow the money” when trying to decide why this isn’t studied or published more. I realize that’s kind of a cynical attitude, but seeing what happens these days in our corporate environment, to me it’s possible. Try not to worry too much about it and don’t hesitate to come here for support if you’re concerned.

 

[marmarmish]

@Jamie I think you make a good point with the "due or die rhetoric", and sadly enough, the "follow the money" point. And also @Laylas point about the medical community having got things wrong over the years.
Cynicism has it's time and place...

I look forward to proving them wrong! You folks are such a great support! I wouldn't know where else I could go to, to hash all this out...

 

[marmarmish]

I love reading about folks who've regained ROM months past the time window it's said to happen. But as I asked earlier, "Are these stories only about a small percentage of lucky folks?" This is the last time I bring this up! I swear! But if I am having trouble wrapping my head around this issue, you can bet many others are too!

So dang! Last night I spent a couple of hours combing through articles on PubMed (as I understand it is a website given a thumbs up by BoneSmart), and they all support this 3 month "rule"! I tried to find articles with alternate opinions regarding the "3 month myth", but didn't find anything. Thoughts and rebuttals?

Also, in my search I found this website: https://jointawareday.org/2022-program-faculty/
Can you tell me what role this has in the information disseminated here on this forum? Did they offer conclusions, perspectives etc. from the 2022 Program?
I'd be very interested in what their position on the 3-month time frame is.

 

[dotski]

I think you are asking excellent questions and being proactive in looking for sources that draw conclusions from scientific method (vs anecdotal evidence based on a self-selected patient population).

I will say that my surgeon has a huge wait list and if he doesn’t need to do MUA he doesn’t want to have to fight for OR time doing that vs what he would rather be doing. Maybe some do it for money, but the ones I’ve met do it because they genuinely like helping people get active again.

 

[Jamie]

I can’t say for sure if these stories are only “a few lucky people.” BoneSmart, for all its good features, isn’t a scientific sample of joint replacement patients. We tend to get the bulk of our members from people who are having problems or are worried that they are. The vast majority of joint replacement patients do their recovery and just go on with their life without ever thinking about searching out an online forum. I wish we had access to their recovery journeys as a balance!

But, what I can say, is that I’ve been with BoneSmart since 2008 and I can count very few of our tens of thousands of members who did not recover well and get to a place where their knee functioned in an acceptable way. As you know, there are no guarantees in life. Some surgeries and recoveries will be better than others. We all grow older, change, and sometimes must adapt to those changes.

I wish I could make promises to you. I can’t. Your surgeon can’t. Sometimes you have to make decisions about what to do that are based on whatever information you have at that point. You can focus on the good possibilities or the bad ones. Try and choose the positive outlook and keep your focus there. Remember that you are so early in your recovery! You have months ahead to continue to improve. Keep your eye on that and try not to worry about the “what ifs.” But….that said, we’ll always be here for you to talk if you have concerns. (((((HUGS))))

 

[Jamie]

Also, in my search I found this website: https://jointawareday.org/2022-program-faculty/
Can you tell me what role this has in the information disseminated here on this forum? Did they offer conclusions, perspectives etc. from the 2022 Program?
I'd be very interested in what their position on the 3-month time frame is.

Joint Awareness Day is an annual program BoneSmart puts on (we unfortunately didn’t get to do a program in 2023, but one is planned for this coming spring). The surgeons listed on the faculty page you found were that year’s presenters. They are part of a group of consulting surgeons that works with BoneSmart. They all do support our position that there is no “window of opportunity” for gaining ROM and that you should not fear that whatever ROM you have at 3 months will be your final result.

Sorry that your PubMed search didn’t reveal any studies that supported gaining ROM beyond 3 months. I would bet there are papers out there that support a different opinion. There are usually many conflicting documents on any topic. It’s all in how the search is done.

 

[dotski]

So dang! Last night I spent a couple of hours combing through articles on PubMed (as I understand it is a website given a thumbs up by BoneSmart), and they all support this 3 month "rule"! I tried to find articles with alternate opinions regarding the "3 month myth", but didn't find anything. Thoughts and rebuttals?

I’ve struggled to find these answers also…and it keeps coming back to my understanding of wound and tissue healing…and that the longer the time passes, the stiffer the tissues get. And my logic says that the 3 month (or 6 week?) window refers to the time within which RAPID gains are possible.

And my logic and experience with body injury says that the longer a joint has less mobility, the longer that other body parts compensate and adapt and become unbalanced. I prioritized flexibility over walking and strength. Maybe it was best maybe not. But I know it would really suck for me if I couldn’t easily get onto the floor for yoga and back care, or soak in my tub, or drive my car, or turn pedals around on a normal bike, and had to take a long and slow route back to a functional body.
There will always be outliers….

 

[EalingGran]

Efficacy of manipulation under anesthesia beyond three months following total knee arthroplasty​

Author links open overlay panelNicholas D. Colacchio MD a, Daniele Abela BS b, James V. Bono MD a, Vivek M. Shah MD a, Olivia J. Bono BA a, Richard D. Scott MD a
Just found this paper from 2019 Arthroplasty Today.
Full article available
Finds that later MUA has just as good results as early ones

 

[dotski]

I would bet there are papers out there that support a different opinion. There are usually many conflicting documents on any topic. It’s all in how the search is done.

Any suggestions on search terms? I think it would be great to see some links to studies on the ROM myth busting page. It could help further empower patients to have informed discussions with their PTs and other healthcare providers

 

[dotski]

@EalingGran great find!

 

[EalingGran]

@dotski The one I posted just now seems to be the only one I could find on MUA done up to a year post op.
But shows similar results for early and late MUA which shows there is no window of opportunity.