Revision TKR Multiple Knee Replacements
- Thread starter Momma-me
- Start date
United States
OP
OP
Momma-me
member
@NavyGunns wow I never thought of that but that makes perfect sense!
Josephine
NURSE DIRECTOR EMERITA
Okay, you posed a few questions there:
1. if there is any evidence of arthritis anywhere else in the knee, then a partial is most definitely NOT recommended.
2. going in to a surgeon and asking (or in his view demanding) a TKR would not go down well. You can 'discuss options' but unless he is thinking TKR from the outset, you'd be banging your head against the proverbial brick wall! Your only choice is to find a surgeon who is willing from the outset.
3. You want to know why you are getting these bursts of pain that sometimes render you incapable of walking?
Here it is!
Let me tell you about this pain
Prior to my surgery I had barely any ongoing pain, just what I refer to as an occasional 'stone in the shoe' pain which came and went erratically. Sometimes it lasted for an hour, sometimes for a week, once it lasted two weeks, but I knew what caused it so let me share that with you.
Arthritis has the effect of making our joints crumble like an old concrete step as you can see here
![[Bonesmart.org] Multiple Knee Replacements](https://bonesmart.org/forum/attachments/ai64-tinypic-com_wb2fr6-jpg.71682/ "[Bonesmart.org] Multiple Knee Replacements")
It breaks down, creating lots of grit and debris. Generally this stays in the pouches at the side of the joint but every so often, a craggy, rough edged bit gets into the weight bearing part of the joint and then we get that extreme pain and can't bear weight on the leg at all! Pain killers do nothing, nor do things like braces. We are just conscious of this excruciatingly horrible pain that all of a sudden goes away!
![[Bonesmart.org] Multiple Knee Replacements](https://bonesmart.org/forum/attachments/img4-jpg.68795/ "[Bonesmart.org] Multiple Knee Replacements")
It's every bit as disabling as the constant bone-on-bone pain so many others suffer and is a very good indicator that a joint replacement is needed.
I suppose I had about 6 such episodes in the year leading to my surgery and sitting in the pre-op, perfectly able to walk around without any problems, felt more than foolish! So when my surgeon came to check me over, I sheepishly asked if this surgery was really necessary and wasn't I just wasting everyone's time! (do remember that this was a department I'd worked in for a number of years and I'd worked with this surgeon as well!) But in a very avuncular way, he patted my arm and just said in a reassuring tone "Well let's just say it isn't going to get any better"! I took his point and went ahead with the procedure!
To assess your need for replacement, print off the form in this link, read the instructions and fill it in Score chart: how bad is my arthritic hip/knee
1. if there is any evidence of arthritis anywhere else in the knee, then a partial is most definitely NOT recommended.
2. going in to a surgeon and asking (or in his view demanding) a TKR would not go down well. You can 'discuss options' but unless he is thinking TKR from the outset, you'd be banging your head against the proverbial brick wall! Your only choice is to find a surgeon who is willing from the outset.
3. You want to know why you are getting these bursts of pain that sometimes render you incapable of walking?
Here it is!
Let me tell you about this pain
Prior to my surgery I had barely any ongoing pain, just what I refer to as an occasional 'stone in the shoe' pain which came and went erratically. Sometimes it lasted for an hour, sometimes for a week, once it lasted two weeks, but I knew what caused it so let me share that with you.
Arthritis has the effect of making our joints crumble like an old concrete step as you can see here
It breaks down, creating lots of grit and debris. Generally this stays in the pouches at the side of the joint but every so often, a craggy, rough edged bit gets into the weight bearing part of the joint and then we get that extreme pain and can't bear weight on the leg at all! Pain killers do nothing, nor do things like braces. We are just conscious of this excruciatingly horrible pain that all of a sudden goes away!
It's every bit as disabling as the constant bone-on-bone pain so many others suffer and is a very good indicator that a joint replacement is needed.
I suppose I had about 6 such episodes in the year leading to my surgery and sitting in the pre-op, perfectly able to walk around without any problems, felt more than foolish! So when my surgeon came to check me over, I sheepishly asked if this surgery was really necessary and wasn't I just wasting everyone's time! (do remember that this was a department I'd worked in for a number of years and I'd worked with this surgeon as well!) But in a very avuncular way, he patted my arm and just said in a reassuring tone "Well let's just say it isn't going to get any better"! I took his point and went ahead with the procedure!
To assess your need for replacement, print off the form in this link, read the instructions and fill it in Score chart: how bad is my arthritic hip/knee
OP
OP
Momma-me
member
@Josephine thank you so much for that information. I feel that what you wrote explains my situation to a "T"!!!!!
Sometimes I think I'm going crazy. I have disabling, 10 out of 10 pain sharp pain, knee cap locks up, can't walk without crutches and limp. Then, I'll have brief moments, where I take some steps... and nothing. So, I think.... "oh, maybe I AM recovering from this!?" and then the next hour, it happens again. At this point, I know what needs to be done although the unknown is scary. But I cannot live like this anymore either.
I have had injections, creams, patches, RFA, PT... done everything and anything I know to do and it just gets progressive worse.
I have an appointment today with a surgeon and I don't know what he will say to me. I agree, the surgeon has to feel it is the appropriate next step as well. I have not had success with surgeons feeling that this is a good step for me. I have heard, "you will hate it", you're "too young" or, I'm told that the arthritis on the MRI/Xray does not look aggressive enough to warrant such an extreme procedure.
But, l am CONFIDENT when/if someone goes in there, they will be shocked. My MRI's have a tendency to be far more gracious than what's actually going on in there. I woke up from both my last surgeries and the first thing my surgeon relayed to me was how stunned at how bad of shape my knee was in. (And my MRI was fairly unremarkable). My surgeon said my cartilage literally "crumbled" in her hand, and that my knee was "a mess".
My first ever MRI showed NOTHING and my surgeon did a scope and when I woke up, he said I had a meniscus tear, a large cartilage defect in the lateral compartment, and grade 3-4 arthritis under the patella! And NONE of that showed up on the MRI!!!?? I was shocked, but it made me feel justified that I wasn't loosing my mind!
Again, I appreciate you sharing your story because I could have literally wrote that myself!
Sometimes I think I'm going crazy. I have disabling, 10 out of 10 pain sharp pain, knee cap locks up, can't walk without crutches and limp. Then, I'll have brief moments, where I take some steps... and nothing. So, I think.... "oh, maybe I AM recovering from this!?" and then the next hour, it happens again. At this point, I know what needs to be done although the unknown is scary. But I cannot live like this anymore either.
I have had injections, creams, patches, RFA, PT... done everything and anything I know to do and it just gets progressive worse.
I have an appointment today with a surgeon and I don't know what he will say to me. I agree, the surgeon has to feel it is the appropriate next step as well. I have not had success with surgeons feeling that this is a good step for me. I have heard, "you will hate it", you're "too young" or, I'm told that the arthritis on the MRI/Xray does not look aggressive enough to warrant such an extreme procedure.
But, l am CONFIDENT when/if someone goes in there, they will be shocked. My MRI's have a tendency to be far more gracious than what's actually going on in there. I woke up from both my last surgeries and the first thing my surgeon relayed to me was how stunned at how bad of shape my knee was in. (And my MRI was fairly unremarkable). My surgeon said my cartilage literally "crumbled" in her hand, and that my knee was "a mess".
My first ever MRI showed NOTHING and my surgeon did a scope and when I woke up, he said I had a meniscus tear, a large cartilage defect in the lateral compartment, and grade 3-4 arthritis under the patella! And NONE of that showed up on the MRI!!!?? I was shocked, but it made me feel justified that I wasn't loosing my mind!
Again, I appreciate you sharing your story because I could have literally wrote that myself!
Josephine
NURSE DIRECTOR EMERITA
It's my opinion that MRIs are greatly over-rated. Plus during my career life, I've known many patients who, on the one hand, said they had very little pain and disability yet their xrays were 'oh gor blimey!' and others who were confined to a wheelchair whose xrays showed almost nothing by way of damage. It just confirms that the surgeon should take into consideration
1. the patient's history
2. the results of a physical examination and
finally 3. the xray findings.
2. the results of a physical examination and
finally 3. the xray findings.
OP
OP
Momma-me
member
HI everyone,
So i saw a surgeon here in SC where I live now.
He said that according to the MRIs.. the arthritis doesn't look "that bad" and that because of my age (50), he doesn't feel he is the "right" person to help me. He said he would be willing to do a "scope' to take a look and see what is going on in there, but he doesn't feel comfortable doing a full knee replacement on either knee.
He told me to "go back" to the surgeons who have already been in there and know what is going on.
I told him, I cant do that because I don't live in NY anymore, and now that I have moved, I am trying to find a surgeon here in SC who can help me. (??)
He encouraged me though, to get a second and even third opinion and that maybe I would find someone who wasn't as "conservative" as he is.
SO.. back to square one
I have never seen a surgeon that didn't mention my age, and the fact that the replacement would not "meet my expectations".
At this point, all I want to do is WALK without pain!!!! Why is that too much to ask??????????????
So i saw a surgeon here in SC where I live now.
He said that according to the MRIs.. the arthritis doesn't look "that bad" and that because of my age (50), he doesn't feel he is the "right" person to help me. He said he would be willing to do a "scope' to take a look and see what is going on in there, but he doesn't feel comfortable doing a full knee replacement on either knee.
He told me to "go back" to the surgeons who have already been in there and know what is going on.
I told him, I cant do that because I don't live in NY anymore, and now that I have moved, I am trying to find a surgeon here in SC who can help me. (??)
He encouraged me though, to get a second and even third opinion and that maybe I would find someone who wasn't as "conservative" as he is.
SO.. back to square one
I have never seen a surgeon that didn't mention my age, and the fact that the replacement would not "meet my expectations".
At this point, all I want to do is WALK without pain!!!! Why is that too much to ask??????????????
OP
OP
Momma-me
member
How do you guys go about finding a surgeon who cares more about your functionality and quality of life over your age???
The next guy I am making an appt with is supposed to be a knee/revision specialist, but he looks old from his profile. (I'm sure he's good and I hate to judge) but I am wondering if someone younger would be more understanding of what I am going through instead of just focusing on how "young" I am...?
One guy (back in NY) told me he would do a TKR but told me that I would "hate it" and he told me he would "rip it out" (my partial) if I "wanted him to"
UGH...
The next guy I am making an appt with is supposed to be a knee/revision specialist, but he looks old from his profile. (I'm sure he's good and I hate to judge) but I am wondering if someone younger would be more understanding of what I am going through instead of just focusing on how "young" I am...?
One guy (back in NY) told me he would do a TKR but told me that I would "hate it" and he told me he would "rip it out" (my partial) if I "wanted him to"
UGH...
Call offices and ask if they do TKRs on younger people. If they say no ask them if they know someone who does.
Maybe go to some PT places and ask what doctors will do younger patients? They must see younger patients.
All I know is second opinions are so difficult. You and I are not the only members here who are not getting answers.
Maybe go to some PT places and ask what doctors will do younger patients? They must see younger patients.
All I know is second opinions are so difficult. You and I are not the only members here who are not getting answers.
Back in the early 2000s when I moved away from where my OS, at the time was, it was really difficult to find a doctor that would take my knees on. Having had my kneecaps removed when I was in my 40s instead of getting tkrs because of my age left me with very few doctors that would have anything to do with me. Their comments were to go back to the doctor that removed my patellas. I searched and finally found one who would take me on.
You will also find that OS that's willing to help you. It'll just take patience. I pray it happens quickly for you!
You will also find that OS that's willing to help you. It'll just take patience. I pray it happens quickly for you!
OP
OP
Momma-me
member
@Josephine (and everyone else who is so gracious to respond and knows more than I do!) 
I am wondering about scar tissue also. I know it is hard to see on an MRI.
Usually arthrofibrosis presents as an inability to bend and straighten your knee fully, is this correct?
I am able to do that (extension to 0...although it hurts in the medial side to do that).
But, after my PFR, I was in a straight leg brace for almost 4 months.. I could not bend my knee, and I am wondering if scar tissue is built up in there.
My knee feels like there is a web in there, covering the whole knee joint. (That's the best way I can describe it) and when trying to walk... when I lift my knee, to push my foot forward to hit the floor in front of me (terminal swing).. that motion, makes my knee cap feel like it is being pulled in all different weird directions and I can't propel my foot forward and make it hit the ground in front of me. Because of that, it makes my knee feel super unstable. I can do it OK, if I am walking very slowly, and only have to put my foot about 6 inches in front of me, but I cannot walk faster. It's the terminal swing I cannot do but it is because something weird is going on inside my knee joint causing it to quiver and be pulled around during that motion.
I have developed a "circumduction" walk to compensate. Or I can walk on a straight leg. (neither will work obviously) I wish I could explain it better.
When you put your hand on my knee and I flex and extend it, you can feel ALL KINDS of cracking (and you can hear it) popping and snapping. It's crazy.
Oh, I need to add, that when I try to take a decent sized step and walk at a reasonable pace, I walk on a bent knee. I cannot fully extend it when I'm walking. Which has puzzled the PT because I CAN get it to full extension when I am NOT weight bearing. (??)
Could scar tissue be causing that? If so... that's another issue I need addressed.
I have been in PT forever, and my PT doesn't seem to know what is causing this. She said I should see a neurologist but I feel like if the issue INSIDE my knee was addressed, it could be fixed.
Thoughts??
I am wondering about scar tissue also. I know it is hard to see on an MRI.
Usually arthrofibrosis presents as an inability to bend and straighten your knee fully, is this correct?
I am able to do that (extension to 0...although it hurts in the medial side to do that).
But, after my PFR, I was in a straight leg brace for almost 4 months.. I could not bend my knee, and I am wondering if scar tissue is built up in there.
My knee feels like there is a web in there, covering the whole knee joint. (That's the best way I can describe it) and when trying to walk... when I lift my knee, to push my foot forward to hit the floor in front of me (terminal swing).. that motion, makes my knee cap feel like it is being pulled in all different weird directions and I can't propel my foot forward and make it hit the ground in front of me. Because of that, it makes my knee feel super unstable. I can do it OK, if I am walking very slowly, and only have to put my foot about 6 inches in front of me, but I cannot walk faster. It's the terminal swing I cannot do but it is because something weird is going on inside my knee joint causing it to quiver and be pulled around during that motion.
I have developed a "circumduction" walk to compensate. Or I can walk on a straight leg. (neither will work obviously) I wish I could explain it better.
When you put your hand on my knee and I flex and extend it, you can feel ALL KINDS of cracking (and you can hear it) popping and snapping. It's crazy.
Oh, I need to add, that when I try to take a decent sized step and walk at a reasonable pace, I walk on a bent knee. I cannot fully extend it when I'm walking. Which has puzzled the PT because I CAN get it to full extension when I am NOT weight bearing. (??)
Could scar tissue be causing that? If so... that's another issue I need addressed.
I have been in PT forever, and my PT doesn't seem to know what is causing this. She said I should see a neurologist but I feel like if the issue INSIDE my knee was addressed, it could be fixed.
Thoughts??
Last edited:
Josephine
NURSE DIRECTOR EMERITA
Not really. Adhesions is categorised as that as well. But what you could also be describing is simple stiffness.
This is not uncommon in a knee that's had surgery. BUT in your case, since I don't recall you telling me your ROM, I would like to know what your surgeon is saying about all this? Has he mentioned "scar tissue" or adhesions? Has he mentioned doing an MUA? Because I do believe that's the only way you're going to have a good knowledge about what's going on. So what IS your ROM? (that's flexion AND extension, please!)
One things for certain here - if your PT doesn't have clue about what's going on in your knee, how can she know if she doing you good or harm? That would worry me and I wouldn't stay in her 'care' for a moment longer!
I already asked you this on July 28th but I'm going to ask you again!
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?
OP
OP
Momma-me
member
OP
OP
Momma-me
member
@Josephine
My surgeon had said a year ago, that if I still have pain, she could do a "scope" to see if I indeed had scar tissue build up. As this past year progressed, I was walking with a more pronounced limp and increasing pain.
I went to see her 2 weeks ago, actually to address the non-operative knee because that one is hurting also.
She said I still have not "recovered properly" from the right knee surgery and does not want to do the left. When I mentioned the scope she said "no" because she feels it is a PT or CRPS issue. (which it is not) She didn't really listen to me. She said because my flexion and extension is good, it wouldn't be scar tissue. (??)
My surgeon is away on a month long vacation, so I cannot talk to her, but I talked to her NP today and she confirmed that my arthritis IS spreading to the other 2 compartments, but it only has exposed bone in certain areas, and therefore, it doesn't look "too bad" She admitted that is going to continue to spread and that a TKR is inevitable to rid of the arthritis, OK....
SO... She said that if I was at the end of my rope with all of this, that it was my choice if I wanted to have the TKR and it would be "fine". (for a second I was relieved!) But my Dr. won't do it because I had an inconclusive diagnosis at one time with CRPS. (Which IMO, I never had.... another long story)
I asked her... "So if the answer is a TKR but I can't get one because of an inconclusive dx of CRPS (and I have none of the symptoms).... WHAT AM I SUPPOSED TO DO??"
And she just said "this conversation is going around in circles"
My surgeon had said a year ago, that if I still have pain, she could do a "scope" to see if I indeed had scar tissue build up. As this past year progressed, I was walking with a more pronounced limp and increasing pain.
I went to see her 2 weeks ago, actually to address the non-operative knee because that one is hurting also.
She said I still have not "recovered properly" from the right knee surgery and does not want to do the left. When I mentioned the scope she said "no" because she feels it is a PT or CRPS issue. (which it is not) She didn't really listen to me. She said because my flexion and extension is good, it wouldn't be scar tissue. (??)
My surgeon is away on a month long vacation, so I cannot talk to her, but I talked to her NP today and she confirmed that my arthritis IS spreading to the other 2 compartments, but it only has exposed bone in certain areas, and therefore, it doesn't look "too bad" She admitted that is going to continue to spread and that a TKR is inevitable to rid of the arthritis, OK....
SO... She said that if I was at the end of my rope with all of this, that it was my choice if I wanted to have the TKR and it would be "fine". (for a second I was relieved!) But my Dr. won't do it because I had an inconclusive diagnosis at one time with CRPS. (Which IMO, I never had.... another long story)
I asked her... "So if the answer is a TKR but I can't get one because of an inconclusive dx of CRPS (and I have none of the symptoms).... WHAT AM I SUPPOSED TO DO??"
And she just said "this conversation is going around in circles"
Keep looking for that second opinion. Being in a new area you don’t have to worry about any surgeons knowing your original, so I would think you’d get an unbiased opinion.
OP
OP
Momma-me
member
OP
OP
Momma-me
member
i was wondering if any of you used the hiking poles to help with stabilization/gait, etc..
I just bought a pair yesterday off of Amazon! I found that when I use my crutches, I use them like "poles" instead of how you usually use crutches. I didn't know it was a thing, until I came home from my walk yesterday and looked it up. I was like... hey, ya.. that's what I need!!
I just bought a pair yesterday off of Amazon! I found that when I use my crutches, I use them like "poles" instead of how you usually use crutches. I didn't know it was a thing, until I came home from my walk yesterday and looked it up. I was like... hey, ya.. that's what I need!!
Josephine
NURSE DIRECTOR EMERITA
That's absolutely correct. The problem with adhesions is that they generally tend to block ROM. And with a flexion of 140, there is NO WAY you have adhesions.
Well that was a helpful comment!
As for the questions, 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.
OP
OP
Momma-me
member
1. At Rest in the AM: 0
At Rest in the PM: 3-4 (Throbbing)
In Ambulation: 5-10 (Sharp.. comes and goes; only lasts for a second)
2. I have not been given any prescription pain meds
Tylenol 650mg BID
Advil 800mg BID
I have been taking these medicines for so long, they are disrupting my stomach (stabbing pains and indigestion type stuff) so I really try not to take them any more frequently
3. Swelling slight
4. Flexion: 140 Extension: 0
5. icing: No
6. elevating: No
7. I live alone. I do all of the housework (but I live in a very small apt), shopping, laundry (very little), etc. I am on short term disability now, so I go out every day and walk with my crutches; approx 2 hrs/day total. Ride my bike; flat surface, approx 15 min
8. AT HOME: 3-4X/week
Monster band walking (across living room and back.... approx 20ft) X2
Straight leg band walking to the side (across living room and back....approx 20ft) X2
Squat up from couch into standing position; then shift to stand on operative leg. 10 reps X1
Proprioception work. Stand on one leg cross arms; close eyes. One foot in front of the other; close eyes
At PT x2 per week
Bike warm up; 5 min
Band walking (see above)
Practice gait/walking on the treadmill; 5 min
Ladder work. This is a plastic rope ladder that she puts on the floor and I try to weave in and out of it quickly
Approx 5 min
Step ups. Right foot on, left foot on. Right foot off, left foot off. Not your typical step ups. As fast as I can. Then switch starting foot. 15 sec X3
Proprioception work
Bridges; 10 reps X2
Clamshell with bands 10 reps X2
Hip work. Stand on one leg at full extension. Squeeze hip and lift pelvis up and down while tapping heel of another leg on the floor (IDK how else to describe it) 10 reps X2; both sides
At Rest in the PM: 3-4 (Throbbing)
In Ambulation: 5-10 (Sharp.. comes and goes; only lasts for a second)
2. I have not been given any prescription pain meds
Tylenol 650mg BID
Advil 800mg BID
I have been taking these medicines for so long, they are disrupting my stomach (stabbing pains and indigestion type stuff) so I really try not to take them any more frequently
3. Swelling slight
4. Flexion: 140 Extension: 0
5. icing: No
6. elevating: No
7. I live alone. I do all of the housework (but I live in a very small apt), shopping, laundry (very little), etc. I am on short term disability now, so I go out every day and walk with my crutches; approx 2 hrs/day total. Ride my bike; flat surface, approx 15 min
8. AT HOME: 3-4X/week
Monster band walking (across living room and back.... approx 20ft) X2
Straight leg band walking to the side (across living room and back....approx 20ft) X2
Squat up from couch into standing position; then shift to stand on operative leg. 10 reps X1
Proprioception work. Stand on one leg cross arms; close eyes. One foot in front of the other; close eyes
At PT x2 per week
Bike warm up; 5 min
Band walking (see above)
Practice gait/walking on the treadmill; 5 min
Ladder work. This is a plastic rope ladder that she puts on the floor and I try to weave in and out of it quickly
Approx 5 min
Step ups. Right foot on, left foot on. Right foot off, left foot off. Not your typical step ups. As fast as I can. Then switch starting foot. 15 sec X3
Proprioception work
Bridges; 10 reps X2
Clamshell with bands 10 reps X2
Hip work. Stand on one leg at full extension. Squeeze hip and lift pelvis up and down while tapping heel of another leg on the floor (IDK how else to describe it) 10 reps X2; both sides
