Dear Angela -

I'm genuinely sorry to hear your story. My own is not "the same", but probably similar in a lot of aspects. There
is so much that we as patients do not know prior to surgery - and everyone I've ever talked to that ended up
having problems after... mostly trusted in their surgeons that "this was no big deal" and that they would be "well
taken care of". In reality, there mostly isn't a co-ordinated care plan of any kind (that includes your surgeon - or
anyone else). If you are lucky, you'll get a physical therapist who is empathetic - and who will try to do something
other than just telling you "how great your knee looks" (when it doesn't) and "how good you are going - how well
you are progressing (when you clearly aren't). Many of these physical therapist's (I can't say "most" - although
I suspect this) won't honestly communicate the difficulties you are having (physically), the pain you seem to be
experiencing and etc.) back to your surgical team. IF the physical therapist does this (and of course - they should),
they will potentially "cost themselves business" (because a lot of these surgical teams... want patients "encouraged",
don't want to be bothered with problems they probably do believe are temporary - and will eventually resolve over
time... and more importantly - to them, don't want their time wasted doing things which are NOT additional surgeries).
As a physical therapist -- if you "get a name for" being a patient advocate or honestly reporting problems when you
see them... there is a good potential for you to be "punished" with less referrals from surgeons (and less business,
period). This is another case of incentives pointing exactly the wrong way if you are a patient.

After you have a TKR surgery and experience problems with your recovery... while you are sitting around (elevating
and icing), you start to "get educated" on this subject. Most TKR surgical recoveries are a kind of "race" between
the inflammation and scar tissue formation - and getting the necessary flexion (bending) and extension (straightening).
Based on individual differences your inflammation and scar tissue formation may proceed faster than you can develop
much flexion and extension. Of these two - the extension is absolutely the most important (because if you can't "straighten"
the leg properly, your walking "gait" is negatively affected and it's more likely that you will just continue building scar tissue
to the point that all progress first "stops" and is then "reversed" (and you find that over time you are able to bend and straighten
the leg progressively less - as this is "blocked" by scar tissue accumulations... which just increase over time). The scar tissue
does not "go away" on its own... generally. ASTYM can reduce surface scar tissue, but not the scar tissue which accumulates
in the joint itself. Arthroscopy can remove the scar tissue but often (in my case) promotes exactly the same response (serious
inflammation - and massive scar tissue accumulation resulting almost immediately). This is a process which is well understood
by surgeons and PT providers, but they don't seem to have a good idea for how to avoid this. The most common complaint for
people who have problems with their TKRs is "a persistently stiff and painful knee". In some cases (maybe a lot of cases), this
may be due to a metal or in some cases I am aware of... an adhesive allergy... in my own case originally, this was an allergy to
components of the alloy used in what I believed was a "titanium" prosthetic, but was in fact... a titanium alloy). If you think about
how many women (I guess "men" too - these days) have an allergic reaction to an earring "post" that isn't sterling silver or a
certain kind of stainless steel... you begin to understand the potential numbers of people involved (especially when you are also
considering this is a metal device implanted in your body... AND that metal isotopes are regularly released as part of the normal
process of an articulating joint... moving). This process of metal isotopes being released in the bloodstream (and what negative
effects could be - or are being experienced) is not well understood. When you multiply the numbers 723,000 TKRs in 2017 in
the US by the fact that the Nationl Institute of Health (NIH) says that about 15% of the US population has some degree of allergy
to Nickel or Chromium (which are common in prosthetic alloys) then you start to understand the potential numbers of people who
may be experiencing long term problems.

I was almost a "poster child" of a 59 year old male who had dropped a bunch of excess weight (and kept it off). Now I am soon
to be 63 - and have had an original TKR, a MUA, an arthroscopy, a partial revision, and then (finally) a metals allergy test (with
me - it was Maganese and Molybdenum... which were both present in my first prosthetic alloy) and then another TKR - this with
hypoallergenic components. I still have problems with inflammation and scar tissue formation - and have had another MUA
after this latest surgery (12/17/18) - the only difference being this time with a cortisone injection... which has helped. Maybe... I
am starting to improve slowly (but still... have a ton of pain and inflammation).

Beware of... "pain clinic persons" who are typically "injection specialists" and will try to sell you on PRP, stem-cells, and you
name it (none of which can do much for an already replaced knee). Diet can help (some) with the inflammation. Other than
that, I'd say definitely get yourself tested for a metal allergy if you continue to have problems. Do your own research, but
I think you will find that the MELISA test is the "gold standard" as far as this is concerned (not a simple skin allergy "scratch
test" - which might work fine for a certain make-up applied to the skin, but NOT for an object to be implanted in your body).

I recommend reading up on the subject (of problems with TKRs - you'll find what you are describing is the most common
complaint). Personally... I'd rather have an honest answer than a bunch of blue sky and sunshine. I hope there is an
immediate "cure" for all of this - for you, but there may not be. Honestly, I have to admit that I have some level of outrage
that surgeons are actively promoting these surgeries - when they don't understand "how to make it all better" if problems
are experienced (and frankly, I don't see a lot of interest from the surgical community on this... even as they try to figure
out ways to do even more surgeries - in the shortest amount of time possible). It's a BIG MONEY making business - and
like I said previously (from the patient standpoint), all the incentives are pointed in the wrong direction as far as helping
you to achieve a full (or as much as possible) recovery.

But like I also said - I do believe "the answer" is out there... and I haven't given up looking for this. Who is properly
"incentivized" to find an answer... other than the people who are suffering from these "less than optimal outcomes".

My very best to you (and everyone). Please feel free to ask me any specific questions. I can point you toward reseach
I am aware of... and if I really just "don't know" - then I'll say "I don't know" and maybe we can both (or all) find out.

John

I believe that there is probably an answer that will work for you (and me, and others) out there (somewhere - maybe not in
this country... which as it turns out is very backward in certain areas as far as the practice of medicine goes).