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.

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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.

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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.

Jump to this post

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 ?

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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.

Jump to this post

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

Jump to this post

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.

Jump to this post

@gutthookd @gatorgirl @dduke @exflyer

While I wouldn’t call it successful “long-term” relief from arthrofibrosis yet- I am now 10.5 weeks out from arthroscopic lysis of adhesions and still have the range of motion I left the surgery with and significant better function and dramatically less pain.

I have read my surgery report and a “significant” Amount of scar tissue was removed from both gutters, the superpatella pouch and some “notch” that was pulling down my kneecap. Basically, as near as I can tell – the new knee was encased in scar tissue and there was no way it was going to move on it’s own. I had the arthroscopic procedure 8 months after my TKR.

Mine normally shows up at about 6 weeks. I have an issue at one portal – but we have been able to minimize it so far.

This hasn’t been without a tremendous amount of effort in PT and I am doing 2 hours plus of active PT a day still. I only did the surgery because of the pain. If my ROM was limited but I had no pain – I would not have

This is my third round of battling arthrofibrosis in 3 different body parts. The knee is by far the worse pain wise. The abdominal one was far the scariest.

Anyway. -it can be successful. But you, your PT and your surgeon all need to be educated about it and on the same page about treatment.

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@melcpa86 that’s great that things are going so well for you. It’s good to hear of some good results. How much did your ROM improve from the lysis? That is what I am considering the procedure for. I am not in pain.
Thanks.
JK

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@contentandwell – my active ROM went from 105 to 120. Some days I can get to 125. I have some some tissue “overuse” issues that are limiting my standing and walking and causing pain and we are working through – but it’s not the AF.

I was advised that if it wasn’t for the AF pain- I should NOT have the lysis procedure. It was the pain they were focused on eliminating- not getting me more ROM. In my case they believed the scar tissue formed where it was causing pain and that needed to be removed

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Hi there …. yes, I’ve had scar tissue develop also. It developed slowly over time, but by the time I hit the 1 year mark, my surgeon went in – arthroscopically – and cleaned it up. But, it never was right, and in another year I had to have a revision – a totally new replacement. Since then, my knee could not be any better. I don’t know why this happens to some and not to others … but after several other options had been tried, including the arthroscopic surgery, I opted to just do the revision …. I’m glad I did.
abby

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