Dear Leithlane (and all) - I'm new to this forum, but not to this issue and have previously posted on bonesmart and etc.as "ottothedog".
the last posting there was "2 Year plus odyssey... etc." very long story shorter version is that I was more or less "talked into a TKR by
a surgeon's office who owned the original day surgical center - the rational being that the shoulder replacement surgery I had come
there "for"... was a much longer healing process... and better to do the knee first. Just for the record.... at examination prior to this
surgery I had 120+ degrees of bend and could fully straighten the knee... with no pain. Now at 3+ years out on that original TKR on
12/10/15 and having had since, an MUA on the original TKR, an arthroscopy, a partial revision 08/15/17, then a complete revision
after we established that I had a metal allergy and likely because of the persistent inflammation now the joint had noticeably "loosened".
This last done at OHSU and using a Smith & Nephews hypoallergenic prosthetic. Inflammation subsequent to this last TKR 10/31/18
was less, but still enough that the knee would never fully straighten and then even with near constant but not as aggressive PT we
ended up "frozen" at about 15D extension (straightening) and about 93D flection (bend). So... at 6 weeks post op 12/17/18, we had
an MUA with cortisone injection - which my surgeon really didn't want to do, but was finally faced with the physical evidence of what
the PT provider and I had been telling him for a few weeks. Subsequent to this MUA/injection - there was some improvement and
even got slight rotation (not enough to fully straighten the joint - which couldn't even be fully straightened under anesthesia) and have
improved numbers to about 11D extension and 103'ishD flexion, but are "stuck" again. Based on my history - I expect the inflammation
driven scar tissue accumulation to "re-form" and for the numbers to inevitably "reverse". Personally, I wouldn't care (at this point) if the
numbers didn't advance - if only I could get less inflammation and pain daily.

Unfortunately (for us), there is a whole lot "they don't tell you" prior to surgery... and these lacks (or omissions) continue after surgery.
Every doctor and PT provider has a "plan" for post TKR if everything goes "right", but supprisingly ... not much of a plan when in the
large number of cases when things "don't". Yes, there's a protocol. First the TKR, then PT, then an MUA (maybe more), then an arthroscopy
(maybe more), then a revision (maybe more), then another replacement (complete new TKR)... and then you repeat this same cycle again
(and you find yourself doing the same or similar things, but THIS time expecting different results)..

Here's the reality of "all of our" situations - at the very least... most of them (the "numbers" are available - and from reliable sources like NIH).
A) According to NIH studies about 15% of the US population is likely to have a metal allergy to chromium or nickel (mine was actually to
Molybdenum and Maganese). All of these are commonly found in alloys used for prosthetics.
1.) The "whisper number" about how many "problems" there are given at surgeons offices trying to sell these surgeries is usually given
as less than 10%. According to NIH - it's more like 1 in 5 (or 20%). In 2017 there were 723,000+ TKRs done in the US (forgetting all
other joint replacements. So... is this a significant problem ?
2.) Inflammation after joint implant surgery is not well understood... and where metal ions are being released into the bloodstream of the
patient as part of the normal active motion of a joint like the knee (or hip, or shoulder), this can really cause all sorts of problems - and
many are later "diagnosed" (or more likely "mis-diagnosed" as something (anything) other than having to do with the joint replacement
(although most often this "complex regional pain syndrome" or other - has its onset directly linked to the implant surgery).
B) Orthopedic Surgeons as a national group in the US deny that "metal allergies" are a significant problem and that's why they NEVER test
for this prior to surgery (although this is common in Europe, Asia, and even in South America). What's for sure - is it's never going to be a
problem for the surgeons.
1.) I recommend a Netflix documentary "The Bleeding Edge" which deals with metal allergy problems (and problems generally with the medical
device industry), but also includes the experience of a Dr. Stephen Tower (and orthopedic surgeon - and his own experiences with a hip
replacement and severe cobalt poisoning which included neurological effects and permanent tissue damage). He has become a spokesman
for metal allergies as they relate to implants (coincidentally a graduate of OHSU's surgical residency - and is mostly regarded as a "heretic"
by the orthopedic surgical industry.
2.) According to NIH - metal allergies typically "present" as persistent inflammation (and of course like all allergies, these exist on a continuum
individually (all the way from a sort of "toxic shock" to the far more common "increased inflammation"). If about 20% of all TKR patients have
implants that are problematic - and the most common complaint is "a persistently stiff and painful knee"... how many of these are REALLY
undiagnosed metal allergies ?

3.) The most common cause of prosthetic knee joint replacement is "a loosened joint". NIH studies indicate that persistent inflammation may in
fact be responsible for the "joint loosening" itself and inflammation is always present in loosened joint situations. An interesting fact is that
although NIH "soft-pedals" any discussions of metal allergies as "controversial" (not to the people experiencing this), they do acknowledge
THAT... about 60+% of all "loosened joint" situations that were tested during that next replacement surgery (which is not very many) were
found to test positive to a metal allergy at that time. There is disagreement as to whether the patients develop these AFTER the device is
implanted or if this existed prior to surgery (but since US surgeons categorically do not test for this prior to surgery... it's pretty easy to infer
that many did exist prior). Insurance will not cover your "serum" (blood) allergy test which is believed to be much more accurate than a simple
"skin patch scratch test" (commonly used for "skin" allergies). The "Gold standard" test for this is the MELISA test - contact information is
available on line (and these are nice, helpful people). Expect to pay about $575 USD including airfreight to their lab in Neuss, Germany.

The problem is... uniformly... surgeons "do surgeries", but do not follow or stay involved with the recovery and long term outcomes of their patients.
Yes, they have training and experience which could be of benefit, but unless you are someone really special (like a film star or athlete), there really
are no incentives for them or consequences if things don't turn out well for you.

in a way... it's similar to "incentivizing" home mortgage brokers to approve residential mortgages by "paying them more" to do so. Guess what happens ?
They start approving everything in sight and then even start approving the now famous "No Doc" and "NINJA" (No Job, No Income) home loans. The
consequence that these actions put "the rest" of the country at financial risk (a risk our great grandchildren will be paying for)... was "beside the point"
of these individual making more money in the short term.

Right now... the medical device industry is "bigger" than "big pharma" dollar-wise with all the incentives pointing in the direction of expediting patient
and insurance company approval and then doing as many of these surgeries as possible in the shortest amount of time. Right now - this represents
a sort of "Land Rush Opportunity" situation and because of the demographics of so many older people making up such a large percent of the population,
this represents a rising tide with no "crest" in sight - at least for the next several years.

Doctors and surgeons are not "unfeeling" or "evil". Most of these are highly intelligent and highly skilled people who really do "want" your surgery to
go well, but typically don't want to be continuously confronted by problems they have no solution for. Obviously... this is not "their fault", but with all
the money they are being paid - do they really have no responsibility for rolling up their sleeves and getting personally involved in helping to find a
solution (for what they do know is a really large number of people - each year - nationally) ?

Consequences (not for surgeons - these are for patients) include greater disability and pain than most of us have EVER experienced - with a steady
supply of "medical resource others" to offer all sorts of "injections", "massages","devices" - most of which will not be covered by our insurances..., but
then what will we NOT pay... to at least try to get pointed in the direction of the good health and active lives most of us formerly had ? When you get
right down to it - we'll pay anything (and I know I would).

We don't like to think about it or maybe talk about it... but many (maybe most) of us are opioid pain medication dependent - and i personally know
several people who take alarming (to me) amounts of these... and still are never actually "without significant pain". I certainly - am not. In this larger
group of people there is drug addiction and the hopelessness and other affects DO contribute to the disturbing increases both in "deaths of despair"
that has significantly increased in recent years in people over 50 and the decreases in life expectancy also for US persons over 50 generally. I believe
if we could see "all the numbers" that actually relate to failed and failing prosthetic implant surgeries... it would tell a larger and more chilling story than
most of would probably believe exists.

Maybe this is a case of where we as a group can find solutions through our shared experiences - and maybe some of this includes treatments that
DID work... and that rare physician that cares enough to stay actively engaged to help find a solution.

Here's what I think... I think there are a WHOLE lot more people "just like us" than what most of us (individually) are thinking. I think we mostly "keep
to ourselves" mainly because of our disabilities - and frankly, I'm not so "engaging and fun to be around" when I am in nearly constant pain... either.
I think we have to break through what may be a natural tendency to isolate ourselves... because actually... "WE" (as a more united group of people)
may be the best chance of forcing the medical industry to put some focus on finding a medical solution... because honestly, I don't doubt that there is
a solution (and if they were properly incentivized - who knows what could happen... and quickly.

I wish you (and us all) the best on finding solutions to these problems of persistent inflammation and pain. Please let me know anything useful you
have found (including things that absolutely do not work - so I can avoid these).... and please feel free to ask me questions (believe it or not I do
know SOME helpful - not just alarming things). There is quite a bit "said" and publicly available on "how wonderful these implant surgeries are" and
we have all heard the story about the 78 year old great grandmother who had both knees done at the same time and was "dancing up stairs" within
a month's time (and I do celebrate those stories - and wish this was MY story). But what about the tens of thousands of people each year who are
literally being crippled by these ? THAT you don't hear too much about. We don't solve this... by going into our dark corner, hermitizing ourselves,
and maybe thinking we should accept our fate.. and that this is "only us". I don't believe that's true. Like John Kennedy's comments after the "Bay
of Pigs" debacle... he said: "You know you'll find that... success has a thousand fathers - while failure remains an orphan". Maybe we are also
orphans... and maybe we need to come out of the shadows and be counted. Ultimately... who is really incentivized to help us - but others like our
own selves ?

Anyway... this isn't a short story and I do apologize for the length of this posting. You are welcome to ask me anything (be patient, but I really will
respond) and as i said before - I have NOT given up and encourage the rest of you not to do that.

Thank you all for your patience - and I do wish each and every one of you the very best with your own situation !

John 62 (in Oregon)

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