TKR Michele's RTKR recovery journey

[Cheleigh]

Thank you @sistersinhim I thought my journey was just specific to me, not general questions. Sorry about that. I appreciate the help and info!

 

[Cheleigh]

As long as there is an improvement, even if it's slowly, then you don't have adhesions.

Is that how they gauge scar tissue - by progress? I’ve wondered how they determine that without an MRI air CT scan. So if you’re making little or no progress, they believe it’s because of scar tissue? My PT noted yesterday that it’d be interesting to see what my surgeon says about moving forward because I am progressing and not showing any “problems” - just progressing slow.

 

[Jockette]

Scar tissue gets blamed for many different things, and it’s often not the answer, but seems to be the go to answer. In reality, some surgeons just don’t realize how slow a normal recovery is. I guess they missed that class in medical school.

ROM is not the only measure of recovery progress. Feeling better, walking a bit further without extra pain, pain level lessening in general, able to step up better than a week ago, sleeping better, etc, are all measures of recovery.

 

[JusticeRider]

@MichelePrevette, I am so impressed that you insisted on seeing your surgeon instead of the PA. I know that the PA’s are very knowledgeable and experienced and have a lot to offer, but it is a little annoying how some of these surgeons are treated like they are gods and don’t have time to waste talking to us mere mortals. I also haven’t seen my surgeon since he operated on me. More importantly, he hasn’t seen ME, or my knee. So I really admire you taking the reins a bit. Really, well done! If my PA pushes me to get a MUA again, I’m going to insist on meeting with my surgeon too. We have to be our own advocates as patients, don’t we?

 

[Jamie]

Whether or not a person has adhesions is not measured by progress exactly. If you are improving even at a snail's pace, you are still improving and do not have adhesions. People who actually DO have them report a feeling of a "hard stop" (not necessarily painful) when they try to bend their knee. They go for weeks not being able to move beyond a certain point in their flexion. For these people, an MUA may bring some additional flexion along with the pain of being manipulated. During the process, when there are actually adhesions, the surgeon manually forces the tissue to free up and your knee to bend. A good surgeon will know when he's dealing with this type of tissue.

However, sometimes surgeons don't seem to really understand adhesions that may occur with knee replacements. We've heard of doctors telling their patients they were able to get a knee bend during the MUA procedure of some high level of flexion (120 degrees or more). And that they got there easily (implying that you should be able to do so as well and if you can't, you're not trying hard enough). The reality is, if they can bend your knee without a lot of effort, your problem is related to inflammation and swelling and not adhesions.

This thread from our BoneSmart Library explains a bit more about knee replacements, adhesions, and MUAs.

 

[sistersinhim]

Jockette is so right about judging our recovery. I didn't go to PT or do exercises and I didn't measure ROM. I judged my healing by what I could do. Being a divorced woman that was alone most of the time, I had a lot of things to do to take care of myself, my house, my yard, and my kitties. This was my PT and exercises. I took things very slowly, doing one thing a day except for my ADL, (activities of Daily Living) for the first few months. This was how I measured my recovery. I already knew, because of Bonesmart, that adhesion, what many mistakingly call scar tissue was very rare and wouldn't be a problem for me since I'd already had 11 previous knee surgeries with no problems with adhesion happening.

Numbers aren't important, function is. What you can do matters, not what the PT pushes you to.

 

[Cheleigh]

@MichelePrevette, I am so impressed that you insisted on seeing your surgeon instead of the PA. So I really admire you taking the reins a bit. Really, well done! If my PA pushes me to get a MUA again, I’m going to insist on meeting with my surgeon too. We have to be our own advocates as patients, don’t we?

Thank you! I’m done with the PA. He is the worst. Yes!!! We have to advocate. I actually spoke to the Hospital’s Nurse Navigator about the PA and sought advice on how to continue care there, but not see him again. She helped me reschedule for the same day but different time AND with the surgeon. I’ve been hoping that the PA wouldn’t notice and switch me back to him. So far so good. If the surgeon notices and asks why the switch I’ll just give him some of the examples of the service I’ve received from the PA. I hope it goes smoothly and no drama. I appreciate your encouragement.

 

[Cheleigh]

@Jamie thank you so much!

 

[Jockette]

The last thing we need at a time like this is drama from our surgeon‘s office!

 

[Zanza]

ROM is not the only measure of recovery progress. Feeling better, walking a bit further without extra pain, pain level lessening in general, able to step up better than a week ago, sleeping better, etc, are all measures of recovery.

Interesting you say this. Neither the physical therapists nor the doctor ever mentioned any of those other "markers." They don't seem to care much about quality of life. What good is it if you can bend and straighten your leg if you feel miserable and you can't do anything? This is like what I went through before the knee replacement, trying to get the surgery. I argued with doctors for years while my world got smaller and smaller and my life just went away. They didn't care. It was only when I was on the point of going on permanent disability that they would finally listen and replace the knee.

 

[Zanza]

@MichelePrevette I got a different physical therapist too after a couple of times. The first one was a big husky young man who made sarcastic comments and went by the philosophy "If it doesn't challenge you it doesn't change you," which seems to be the latest "No pain no gain." I hope all goes well with your surgeon. Keep us posted!

 

[Cheleigh]

I had follow up with surgeon and am pretty discouraged and don’t know what to do. Of course he recommended MUA. Wants to do it Monday. I asked what the other options were, he said none. I told him I was informed on MUAs and wasn’t convinced that I’ve given myself enough time to heal. He asked me why I had been researching MUAs and I told him because I know that’s the only course of action they’ll recommend on “poorly progressing ROM”. I explained the example that I’ve read on here about how if your leg is in a plaster cast it won’t bend but once outside of the cast it will - and compared that to me and how I I still have so much inflammation. Nope. Need to do the MUA because of scar tissue but he can’t confirm I have scar tissue other than saying my knee won’t bend further because of scar tissue.

I just don’t know… He said my ROM is “awful” at this point and that, “clearly we’ve done something wrong in your care”. Makes me so mad because I’ve dealt with that jerk of a PA and have told him from day 3 that I needed different/better pain and inflammation management and now it appears as if my concerns that the PA wasn’t running everything thru the surgeon are valid. I just don’t know what to do, I don’t know IF I truly have scar tissue, how to tell, if I should wait longer etc. He asked at the end of the visit what my PTs are saying, and I told him they say I’m progressing fine, just slow and THEN he said “well I’ll call them and see what they say… maybe I’m wrong”. What in the world?! I have a follow up with him next Thursday to make a decision on the MUA. I am so afraid of an MUA and just don’t know what to do…

 

[Jockette]

I’m sorry that you don’t have a surgeon who is more understanding of the true healing process.

I am so afraid of an MUA and just don’t know what to do…

“When in doubt, don’t” is what I live by, in most cases.

Most MUAs are not a terrible thing, you really don’t have to be afraid of it.

The only thing that an MUA will help with, is adhesions.

The “scar tissue” your doctor is thinking of is more appropriately called adhesions. These are rare, and rarely form within 7 weeks of surgery. It is doubtful that you have adhesions at this point. What you do have is a doctor with a one size fits all recovery protocol. We are not one size fits all, we are individuals with our own healing timeframe.

Don’t be afraid to take charge of your recovery and tell your doctor you are going to give your leg more time to heal. He can’t do an MUA without your signed consent and you go into the surgery room to have it done. He can’t force you to do all this.

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!)
So, if a OS or PT bullies you into thinking your ROM will not improve over time they are wrong. By the way, I haven't been back to see the OS since that horrible appointment at 6 weeks, but I sure am going back when I reach 120 just to say, "Ha! You were wrong, BoneSmart was right!" “

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. “

 

[Cheleigh]

Thank you so much @Jockette. That is awesome helpful. Wonder how many would turn out that way if they declined an MUA. When I told my surgeon I wanted to wait he acted very weird and off putting and threw up a high five like “ok we’re done here”. That’s when I said surely there are other options… I was able to make an appt with my PT in 30 mins. I’m going to talk to her frankly about all this and see what she thinks. All along she has said, “this isn’t a No Pain No Gain thing.” So she’s not in that crazy camp that wants to hurt people at least. I’ll let ya know what she thinks.

 

[Cheleigh]

At PT my ROM was 4 degrees more than Friday. She said as far as she’s concerned I am progressing fine over all and she wouldn’t recommend an MUA until end of October if I’m not at 90 ROM. That’s just next week haha! Where’s the face palm emoji? ;-)

 

[Jockette]

the face palm emoji? ;-)

Is this the one you mean, ?

You are coming along fine. You don’t have to be at 90 next week. You will get there when your swelling and inflammation improves. There is no Window of Opportunity. My ROM continued to improve well into my second year, and even into my third year. And, last week, at 5.5 years, I got up from a lower beach chair with ease, which is an improvement even at this late date!

 

[Cheleigh]

@Jockette that’s it! The emojis are always greyed out in the Reply box and when I use them from the Apple keyboard they don’t work right. I appreciate you always commenting and sharing encouragement! That’s so wonderful about the lounge chair’s

 

[Claire56]

@MichelePrevette click on the [ ] on the left and the menu will become available

 

[Cheleigh]

Ohhhh thank you, @Claire56!

 

[Zanza]

@MichelePrevette You've had some awesome advice but I'll throw my two cents in anyway. You had your knee done on August 31. You haven't even made it to eight weeks. Right now your knee is so mad about what happened to it that it's like a toddler sulking in a corner. Ever try dragging a toddler out of a corner to make them behave? Your knee will throw a huge tantrum too if you put it through more misery right now. And it's your knee, not the doctor's knee. You're the one in charge and if you're not comfortable with an MUA, don't do it. At least give your knee some time to settle down first and see what happens with it.