Scar tissue after knee replacement

@doodles418 had asked about my experience with a second manipulation - what was my experience like, was it painful, did it help, and how did I know if it was scar tissue, when did it occur during my recovery?

My recall on the exact details may be a bit fuzzy because I had my knee replacement in 2006 (can't believe it has been that long already). I had end-stage arthritis in my right knee caused by a genetic bleeding disorder that prevents my blood from clotting on its own. When I was a child, the medication to help this disease (hemophilia) was not as good as it is now. Essentially, my blood wouldn't clot without injecting the clotting factor that I was missing. Most people think a cut is the issue, but the bigger issue was internal bleeding. My right knee was my "target joint" meaning I continually had internal bleeding in that joint as a kid which led to arthritis at age 8. By the time I was 19, my knee was completely arthritic and deformed - it was no longer a ball & socket joint, the bones had worn to squares. Because of this my knee - prior to surgery - had not been able to straighten to 0 degrees for almost a decade already. So I went in to surgery fighting all sorts of muscle and ligament atrophy as is.

My initial recovery from the replacement was awful. The ligaments were stretched straight upon waking up for the first time in 13+ years so the pain was intense. Scar tissue took hold almost immediately (likely due to my young age and immune system being much more active than waiting until later in life). Ultimately I had to have a manipulation - more painful to wake up from than the actual surgery. Scar tissue took hold again and I had to have another manipulation, I believe somewhere close to the 8 month mark from the original replacement (but could be closer to one year). Unfortunately, that still did not do the trick. I was told at that point that you cannot do additional manipulations because the scar tissue becomes strong enough to risk breaking your femur at that point.

To answer the question of how did they know, it was determined via x-ray to show the joint itself was not the issue and based on the mechanics they determined it was most likely scar tissue. I tried a full leg cast that had hand cranks built in to it to try and turn the knobs and bend the leg. That did not work. What ultimately ended up working was when I jumped up to catch a football one day and landed and felt a pop (no real pain as I remember). Within a week after that pop sensation, I was 0-90 or so. Over time, I gained additional ROM and landed somewhere between 0-110. I would have liked to get to that 130 range, but 0-110 is much better than my initial 15-50 ROM that basically equated to a frozen leg joint.

A bit long-winded, but it was quite the experience and a very long road to recovery. All said, I think it took somewhere close to 18 months for me to get to that 0-110 range.

@JustinMcClanahan Your story is a heartbreaker for any who has had children. Your parents must have been so distraught to see you struggling so, and of course you must have been a very strong child to have managed with these problems. The important thing is that you are so much better now. I wonder where you knee would be now if not for the fortunate landing, catching a football. Sometimes things happen that we could never imagine.
Thank you for sharing your story.

@tennisgolf I think we all to some extent feel differently as to what is acceptable in flex. My L knee is about 115. My ortho said he could do a lysis to give me more flex and I considered it, but then decided that what I have is fine. I have absolutely no pain. Sure, every now then I wish my flex was better but for me it’s simply not worth going through another surgery. From what I’ve heard the surgery itself is minor but you have to go through PT all over again and that’s a thought I don’t relish.
JK

Hello. These are disturbing experiences re scar tissue. Simple Q.: My TKR done in 2015 is quite good and I can play sports, walk, never was that painful.
The bend, however, is only about 112 or 115. Is that considered "good enough"? I seem to be OK with it. My second TKR was 6 months ago.
Again, a not-very painful experience and good results immediately walking, 4 months later playing racquet sports, golf (not enough confidence yet for outdoor bicycling). Still a lot of stiffness in the knee and some swelling and the bend is only about 100. Is that considered "not enough"? Is it too early to want more? The improvement rate since surgery 6 months ago has plateaued. Would that be due to scar tissue or just normal? I am not uncomfortable. I am 75, but want the maximum successful outcome possible. My surgeon is not concerned about my progress at this time. I realize my plight is not as extreme as some others, but I know early action is essential. Thank you and best of success and comfort for you all.

Hi. New to group. I had TKR 18 months ago. Doc put wrong sized implant in and new doc did revision. Correct sized implant in now, but 6 months post op and lots of scar tissue. Knee is constantly swollen and stiff. ROM is good, 125 and 0 degrees on extension. But the scar tissue is causing the swelling. It's rubbing on tissue and causing bleeding. Most is above the knee and caused by the quad tendon being cut and repaired numerous times. Had 40cc's drained off and it was red, fresh bleeding. Knee still looks terrible. Cannot see kneecap or any definition. New doc says only hope is arthroscopic scar tissue removal surgery. This will be my 7th surgery on that knee. Can't decide if the risk of scar tissue returning is worth it. Any similar stories????

@doodles418 had asked about my experience with a second manipulation - what was my experience like, was it painful, did it help, and how did I know if it was scar tissue, when did it occur during my recovery?

My recall on the exact details may be a bit fuzzy because I had my knee replacement in 2006 (can't believe it has been that long already). I had end-stage arthritis in my right knee caused by a genetic bleeding disorder that prevents my blood from clotting on its own. When I was a child, the medication to help this disease (hemophilia) was not as good as it is now. Essentially, my blood wouldn't clot without injecting the clotting factor that I was missing. Most people think a cut is the issue, but the bigger issue was internal bleeding. My right knee was my "target joint" meaning I continually had internal bleeding in that joint as a kid which led to arthritis at age 8. By the time I was 19, my knee was completely arthritic and deformed - it was no longer a ball & socket joint, the bones had worn to squares. Because of this my knee - prior to surgery - had not been able to straighten to 0 degrees for almost a decade already. So I went in to surgery fighting all sorts of muscle and ligament atrophy as is.

My initial recovery from the replacement was awful. The ligaments were stretched straight upon waking up for the first time in 13+ years so the pain was intense. Scar tissue took hold almost immediately (likely due to my young age and immune system being much more active than waiting until later in life). Ultimately I had to have a manipulation - more painful to wake up from than the actual surgery. Scar tissue took hold again and I had to have another manipulation, I believe somewhere close to the 8 month mark from the original replacement (but could be closer to one year). Unfortunately, that still did not do the trick. I was told at that point that you cannot do additional manipulations because the scar tissue becomes strong enough to risk breaking your femur at that point.

To answer the question of how did they know, it was determined via x-ray to show the joint itself was not the issue and based on the mechanics they determined it was most likely scar tissue. I tried a full leg cast that had hand cranks built in to it to try and turn the knobs and bend the leg. That did not work. What ultimately ended up working was when I jumped up to catch a football one day and landed and felt a pop (no real pain as I remember). Within a week after that pop sensation, I was 0-90 or so. Over time, I gained additional ROM and landed somewhere between 0-110. I would have liked to get to that 130 range, but 0-110 is much better than my initial 15-50 ROM that basically equated to a frozen leg joint.

A bit long-winded, but it was quite the experience and a very long road to recovery. All said, I think it took somewhere close to 18 months for me to get to that 0-110 range.

I had arthroscopic scar tissue removal surgery and it helped tremendously. Because it is done arthroscopically, there is less chance of scar tissue returning than open surgery.

Hi. New to group. I had TKR 18 months ago. Doc put wrong sized implant in and new doc did revision. Correct sized implant in now, but 6 months post op and lots of scar tissue. Knee is constantly swollen and stiff. ROM is good, 125 and 0 degrees on extension. But the scar tissue is causing the swelling. It's rubbing on tissue and causing bleeding. Most is above the knee and caused by the quad tendon being cut and repaired numerous times. Had 40cc's drained off and it was red, fresh bleeding. Knee still looks terrible. Cannot see kneecap or any definition. New doc says only hope is arthroscopic scar tissue removal surgery. This will be my 7th surgery on that knee. Can't decide if the risk of scar tissue returning is worth it. Any similar stories????

hI @timb - Welcome to Connect! I am so sorry to hear of all the problems you have had with your knee replacement. I can imagine that it must be terribly discouraging and scary. I'm glad you are signed in on this thread. I know there have been a number of members who have commented on problems with scar tissue, difficulties with MUA's and other complications. I'm going to tag a few members to see if they can share any insight on the arthroscopic scar tissue removal: @JustinMcClanahan, @doodles418 and @babette . Also, here is an article that might help:
https://www.healthline.com/health/total-knee-replacement-surgery/arthrofibrosis#outlook
With that much swelling, it's interesting that you still have great ROM! How is your pain? and your mobility? I can imagine that it must be affecting your ability to go about your normal activities.

It definitely effects my daily duties. It is "stiff" and painful. Between my two knees, I have had 12 surgeries and 19 overall. I'm becoming immune to the pain and have learned to live with it. I have degenerative joint disease. I'm very dissapointed with results of "correct" replaced knee. It feels quite hopeless. Sorry to sound like a fatalist....