Scar tissue after knee replacement

My experience from the arthroscopic arthrolysis is that the rehab is not as intensive as following the TKR. I did have hydrotherapy which was lush and relaxing, but not nearly as painful as it was after replacement and MUA

Good afternoon Ray, exflyer, and all -

Ray - This is pretty much SOP for TKR recoveries when they "are stuck". As
you (and everyone else probably) already knows, this is because the inflammation
builds scar tissue faster than your PT can break it loose - and finally the patient's
progress halts - and often the flexion and extension numbers start to reverse. In
my case, it was like moving a pile of sand on the beach. By that I mean - the amount
of scar tissue (over an inch thick in places) removed was counter-balanced by the
inflammation resulting from the arthroscopy - the result being that I was back at
square one in a matter of a few weeks. That doesn't mean this is what will happen
in your case - but not that uncommon (once you've already had a problem). For me
this was followed by a partial revision surgery and another TKR about a year later
(because of "joint loosening" - which is often caused by persistent inflammation).
The reason you and your surgeon are talking about this - is because you are already
"stuck". BUT... I would recommend that you at least have a conversation with your
surgeon about WHY this recovery (this time from the arthroscopy) will "go" differently.
That's a legitimate question to ask (although not one that generally gets asked). The
problem (from a patient's standpoint) is that there is no downside for the surgeon to
perform additional surgical procedures. His only question to be answered is - will this
guy's insurance pay for this (and I can assure you - as the surgeon is already assured
or you wouldn't be having this conversation)... and of course, they will. Exflyer's doctor
has a legitimate concern.

I'm sure you all (or most) know that chronic inflammation as a response to surgery - and
especially in the case of an implanted prosthesis... is an immune system response. In our
case (or my case... anyway) this is basically too much of a good thing. The same thing
that helps your incision heal maybe a little more quickly - is what is (for now) causing you
problems with excess scar tissue formation. Part of the reason that cortisone (or most of
the steroids) "works" is because it suppresses the normal immune system response and
by doing that... disrupts the (in my case "excess" or "abnormal") formation of scar tissue.

And just further FYI - orthopedic surgeons (when they're being honest - typically after you've
had the TKR), really don't understand the "WHY" of all this persistent inflammation. Basically -
what they know is that you either DO or DO NOT have problems with inflammation/scar tissue
after a TKR. Logically (to me, anyway) - there should be a way to test in advance (which frankly,
surgeons have no interest in doing... just like they don't test for metal allergies - although they
realize this is potentially a VERY significant - as in high numbers of people - problem). It's an
unfortunate (for the patients) fact, that none of this will ever be a problem for the surgeons.

To everyone out there thinking about a revision TKR, arthroscopy, or other/additional surgeical
procedure on your knee. IF you've had a problem with persistent inflammaton and scar tissue,
PLEASE get yourself tested for a metal allergy. Seriously. Why have additional procedures
that potentially are never going to solve your problem (if you actually do have an allergy). Please
don't take my word for this - check out NIH studies under the heading of TKR's and metal allergies.
This is not an insignificant number of people. I recommend MELISA for blood testing. Believe it or
not - there is very little serum (blood) metal allergy testing done in the US (although this is pretty
common in Europe, Asia, Latin America - etc.). I'd hate to think this was being conciously ignored
(but these surgeons and doctors have access to the same NIH, NEJM, and etc information as I do -
and are still mainly... categorically denying that this could be a significant problem. For them - it isn't.

My best to all - and I genuinely hope that your experiences are much different than mine.

John

Good morning exflyer, bisutton, and all -

Exflyer - I'm sorry to hear about your continuing struggles. I am also a "three plus year guy". My left hip is becomming problematic because of the continuing oproblems with my right knee. I'm not sure there is a good way to avoid this, because if you are walking
or standing much at all... you can not keep from placing additional strain on other weight bearing joints... and like an established
"wear pattern" on a misaligned tire - problems are likely to accelerate.

Yes, "arthrofibrosis" (the fibrotic knee joint explanation). Surgeons are good at describing this, but not at either preventing this
outcome or treating it - once it has already happened. My understanding is that this doesn't "go away on its own" and from my
previous experience, I just expect as more scar tissue accumulates (what would stop it), the flexion and extension to be further
reduced (which means more inflammation, pain, a further "affected gait" - and more problems with other weight bearing joints).
At least your surgeon is "afraid for you" (which speaks well for him). Most will jump at the chance to do a revision surgery first -
and then worry (if ever) about the health consequences for the patient.

I also would be interested in anyone who found ANY kind of relief (other than strictly by accident - like that story about taking
a fall which "ripped the scar tissue loose"... and then it got better), 'Doesn't really matter how far fetched - Ideas ???

Exflyer (and all) - Sorry to hear of your experiences with laser treatments - and thank you for sharing that ! Better for all of us
to hear about what DOESN'T work... and just FYI to all (if I didn't make this clear previously) I had PRP injections (which of
course insurance did not cover) and was thinking of stem cells (but was told in no uncertain language by two people I know
well - that this flatly doesn't work on a replaced joint inflammation situation... although of course you'll find "injection specialists"
who will take your money to "try" this). When this was suggested to me by the guy who did the PRP injections, I had already
talked to those two other people - and so asked this doctor "Have you EVER had stem cell injection therapy produce positive
results in the case of persistant inflammation/arthro-fibrosis with a post TKR knee ?" His response: "Well.. specifically, NO...but
then that's the nature of an experimental therapeutic technique - it might work in any future case, but we can't know for sure
unless we try it. Translated - That means: He is more than willing to experiment with your money and your body - although there
is exactly ZERO scientific evidence that this even could... help you at all. For the person who was asking about "Where is the
FDA to protect us from this sort of thing ?" - Nowhere in sight... and I guess an even better question is where is the AMA - who
is supposed to be at least sort of "watching over" the standards by which medicine is practiced. Bottom line: They don't.

As long term disabled and chronic pain sufferers - we are all... ESPECIALLY at risk for anyone out there "practicing at medicine"
by whatever means (approved therapies - or not). We are literally desperate for a solution and are likely to try anything - as long
as what remains of our health... and our finances... holds out.

=================================================================================================
New question - Anyone out there had any kind of "nerve ablation" (aka "nerve burning") that at least provided some relief from
the pain ? I am considering this (which insurance does cover) - and the story I am being told is: If the nerve block you probably
received prior to surgery provided significant relief (temporarily), then - maybe this will also provide some relief. If you have experience
with this (or have a friiend that did), I am interested in what happened. Please let me know - along with any other ideas.

Thanks - John

PS - Exflyer (and all). You probably already know this, but scar tissue does not show up on xrays.

PPS - Exflyer. None of my business, but by "Exflyer" do you mean pilot - or Philly ?

Good morning (again) JK, Gator, DDuke, and all -

There were some statements that arthroscopy as a treatment for arthrofibrosis was somewhat of a "new concept" - it isn't.
Neither is arthro or "open" lysis. There was a question on what this "arthrolysis" actually is. Here are the answers from NIH
(and invaluable source). Please note that when surgeons are generally aware of a problem but don't actually know what to
do - there is invariably comments about how "this is controversial" (which is another way of them saying - they don't actually
know what to do... which they seem to have a hard time saying). The same way that it is with MUA's and standard arthoscopies -
surgeons know how to do these procedures, but the actual efficacy (in other words - did it "work" for the patient) is at best
"questionable".

Depending on which report you read - you get extremely low numbers (like 3-6% in this one) but then more realistic numbers
like "one in five" (20%) who have long term problems with their TKR surgeries - the most common complaint being "a stiff and
painful knee" (and if that ain't a layman's description of an arthrofibrotic knee - don't know what is). I have heard higher numbers -
and who knows ? The one thing we do know for sure is that this is a VERY large number of people - and if it was ONLY 6% of
the people who were taking a medication (instead of having a surgical procedure reccommended) and THEN became disabled and chronic pain patients, do you think that medication would continue to be on the market without comment (or lawsuits) ?

Anyway... here's the NIH article on arthrolysis (and it's pretty detailed - as all NIH stuff is):
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4246397/
Best all,

John

PS - Maybe I wasn't listening/reading carefully, but did anyone out there say they experienced long term relief from
having had an arthrolysis (when they previously suffered from arthrofibrosis) ? Thanks for letting me know.

No the only benefit is that I can bend my knee to 96 degrees, which means I can drive, and have returned back to work.
I have a lot of pain , and am taking baclofen and amitriptyline for neuropathic pain. I feel as though my leg from my knee downwards has been repeatedly kicked.

Forgot to say my knee flexion under GA before the arthroscopic arthrolysis was only 70 degrees. My surgeon has discharged me and I will likely be discharged from physio later this month. I hv been told my knee will not improve any further. I do not know what my options are, apart from be satisfied that I can now work and drive.

John: thank you for all of the valuable information you provide on this forum—you are definitely several steps ahead of me in your research of this problem. I agree that no one seems to know how many TKR patients suffer from arthrofibrous following their procedures. My surgeon says it is about 1 percent, but my physical therapist says in his experience it is closer to 10 percent. The irony for me is that prior to my surgery everyone I knew who had undergone TKRs had very positive outcomes, but after my procedure about 50 percent of the people I know have had problems and are not happy with their outcomes.

My initial recovery on my first knee went by the textbook, so I opted to do the second knee six weeks later. It was not until a few months after the procedures that I started losing ROM on the first knee and several months after that before the second knee started to lose its range of motion. Two different surgeons have now advised me against additional surgeries because they feel the problem will simply return a few months post-op. I sure hope we start to see some long term success stories from others on this forum!

Will

Retired airline pilot.

@gutthookd this is interesting. My problem is simply one of flex, no pain. I am thinking maybe I should just let it be. I think I will purchase a goniometer to see just how bad it is now. That would be simpler than going to a PT or the doctor to find out.
JK

Good afternoon JK, Gator, Exflyer, (and all) -

JK - Yes, you are very lucky on the absence of pain. The only reason I am considering thenerve ablation (nerve burning)
is because I really (really) need to have less pain.

Gator - I'm sorry to hear you have so much continuing pain. Through the first 1-1/2 years after my TKR, I kept working and
after that went to 3 days a week (as an electrical designer of commercial/industrial projects - and project manager).
Even though this was mainly computer/desk work... it just got to be too much (and believe it or not - I didn't feel like
I was doing a very good job or was nearly as easy to deal with as I needed to be... so I just retired early). I know of
people doing some fairly active physical work with a whole lot of pain (and medication) - and I certainly do sympathize.
No one "gets this" like someone who is struggling to do a fairly complex job interacting with all kinds of people - and
in serious chronic pain. I can't honestly say I was doing a very good job of this - and that's why I stopped. I think it's
really unfortunate that society sort of "discards" people - when they are no longer able to work... maybe I am offbase
saying this, but I've certainly felt that way... including that i've had people suggest that I could've continued for a few
more years. I did stick around to get my replacement as fully trained as I could and allowed calls and questions after
I was no longer being paid for this, but in my own case - I had to draw a line on when I thought I was not able to do the
kind of job I expected of myself. Maybe this is "generational"... I always had higher expectations of myself - than anyone
I ever worked for did of me. My best to you on being able to "soldier on" - I just couldn't. Tough for me to "hang 'em up",
but for me - it was the right thing to do given the need to be absolutely clear on what I was doing in my work... and I just
wasn't (or wasn't to the degree I thought I needed to be).

Per my previous (all), I believe the numbers of people affected by this (arthrofibrosis) are
more significant than are generally recognized... and part (maybe the main part) of this -
may be a sort of resignation to this... as some sort of "fate". I suspect that in time... this
will be understood as a preventable and curable (once it is established in a patient) problem.
The unfortunate thing for us all (as patients) is that the incentives are all in the direction of
doing more new surgeries - not understanding why so many do not recover properly or working
seriously on solutions for this. It's a shame to say it - but it just isn't in anyone (except the patient's)
interest to work out the solution. It's much more expedient to do the minimum required number of
follow-up visits... and then release us from their care (and then go on as quickly as possible to the
next surgery). When that paradigm changes - we'll have answers.

Maybe in our lifetimes - and maybe not.

Best to all (and thanks for everyone's responses),

John