Not sure what you were agreeing to, but your user name is compelling.
Great imagery… I can almost hear the wings fluttering softly above…
Excuse my digression from the subject at hand…
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Dear kneeproblem, marthajean, jk, and all –
In my own case (thankfully – not any of yours), I had an obviously "oversized" upper section
of the prosthetic… which was steadily denied by the original surgeon, but then he sort of
"pointed me in the direction" of the surgeon who ended up doing my revision (because of
the oversized upper component)… and later I learned that a significant amount of his business
was revisions of this surgeon's original surgeries. My wife (an RN) learned this from nursing
staff who are also members of the same local gym we go to. As I talked to others locally who
had these sorts of problems – requiring revision, I found it was common that local surgeons
had this sort of "arrangement" with other local sugeons. Around here (in Oregon), most of
the sirgeons don't do their own revisions – tending to insist nothing is really wrong… and that
it will eventually "get better".
Compltely different subject…. I wonder if people who tend toward an overactive inflammation
response (which is the immune system) share a common genetic heritage. Per my previous,
there isn't much incentive for surgeons to learn more about how to spot higher risk patients
or persons who are genetically predisposed toward greater than usual inflammation response
(which would definitely complicate – if not prevent "a normal recovery").
The reason I bring this up is because I just did that 23&Me testing and have significant
Neanderthal inheritance (yes, I know that some gals think we are all "cavemen", but I'm
being serious). Just FYI – many Western Europeans do have significant Neanderthal
genetic inheritance (no eyebrow ridges, but ?). Anyway… I would be interested in any
person's further comments – once again… who has a greater stake in finding a solution,
than people who are having these problems ? Personally, I think at some point they will
isolate common characteristics which identify elevated risk – and maybe solutions. The
answers are probably in our genes, blood and other body chemistry. Discussion of this
can only help educate us all further… and thanks for your input, comments, or questions.
Thanks – and best all,
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),
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
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):
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.
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 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.
Good morning, registerednurse (and all) –
Infection in the joint capsule after a TKR is a big deal (typically). I hope the antibiotics "work"
and i am crossing my fingers for you. My own situation is so inflammation sensitive that my
previous surgery arthroscopy essentially ended up being like bailing water from a seriously
leaky boat (we regained the scar tissue to the same degree – almost immediately). I'm glad
to hear your exerience has been better (or sounds as if it has – and I hope that continues).
Yes (JK), those gym hot tubs (and swimming pools) do have bacteria in them of all types
(regardless of the amount of clorine put in them). If I had immune suppression issues, I would
share that same concern. Counter-intuitively (at least based on what I think I understand now),
my inflammation problems are driven by too much of an immune system response (some
inflammation being "the normal response"). That's part of "why" a steroid injection "works" to
reduce inflammation – it does this by partially suppressing that same immune system response.
It would make a lot of sense to me – that they would consider "bathing" the joint capsule with
steroids during the TKR surgery (particularly where this is a revision – with a well-understood
history of inflammation causing previous problems), but it's my understanding they generally
will not do this.
More "grist for the mill"
Best to all (and good luck JK),
Good Morning, Babette (and all) –
Yes… this is interesting stuff (and if you're like me – a little surprising that people who are so well compensated…
figure endless ways of "getting a little more"). This is now very common. I guess I don't draw a whole lot of
conclusions from his vs other surgeon's "additional earnings". My questions for any surgeon would be – how
involved will YOU be during my recovery and is there a coordinated care plan (ideally there would be a nearly
seamless hand-off to physical therapists who would stay in contact with the surgeon and fully report on your
progress). If he (or she) waffles on answering these questions, personally – I'd say find someone else despite
their qualifications. The potential problems are not generally caused by their lack of skill as a surgeon, but more
by a lack of willingness (or in some cases – a determination to not under any circumstances) to involve themselves
in anything OTHER than just the surgery (and the healing of the surgical incision – which generally includes making
sure there is no infection concern related to the surgery).
Based on what I think I have learned (personally – and in conversations with others)… where there are inflammation
problems (which are common) during initial stages of recovery – the race to make gains before enough scar tissue
results to halt the progress can be lost by the patient because of generall failures in communication (regarding that
there is a serious problem emerging) between the patient, physical therapist, and surgeon (sometimes also the PCP
where he has stayed a little involved and is aware of the situation). All the medical professionals in this situation defer
to the surgeon – and no one of these wants to make too much noise about patient concerns (although they all are
completely aware this is a time loaded situation). Unfortunately, maintaining these "professional relationships" seems
more highly regarded than patient concerns/distress and it is common that these are discouraged or explained away
as "normal progress".
When I read about that X10 machine and how it came to be developed (by an orthopedic surgeon – a Dr. Halley)
because of him seeing so many problems with his own patients and because of NOT seeing better results with
use of a CPM immediately after the TKR surgery. While this is no kind of "magic" – it is at least an attempt by a
surgeon to help patients recover in response to what he was seeing, rather than just standing back and letting
"this" continue to happen.
I think I'm going to try to do a little further research on what "other countries" (other than the US) are doing so far
as how they are avoiding or helping patients progress through more problematic recoveries. I think we (as US
citizens) tend to think that WE know best regarding how we handle heathcare (and maybe everything else). The
statistical numbers (how much we spend as a percentage of GNP for healthcare – and what our outcomes are)
just don't "add up" favorably for what we are doing. Generally we spend (a lot) more – and get (a whole lot) less.
Even though this is an older program, I recommend Frontline's "Sick Around the World" (which basically looks at
8-9 democratic market economies… some with "public" care and some with "private" care, but single payer through
taxes (and by the way – not higher taxes than what we already pay). What all these other countries have in common
is that they lack a medical insurance industry…period. I think "the way" we receive health care in this country skews
the motivations of those providing it – and in some cases (I think) puts surgical patients at greater risk. Anyway…
this is all interesting stuff (please draw your own conclusions). I think we might all agree… we can do better.
My best to you (Babette – and all),