Scar tissue after knee replacement

Posted by leithlane @leithlane, Jan 31, 2017

I had knee replacement surgery 6 weeks ago . Through PT I have been working on breaking up the scar tissue only for it to regrow by the time I get back to PT two days later. I have been massaging at home, using a hand held massager and roller. It is painful and swollen. I am getting very disheartened. Any suggestions as to what else I can do. Has anyone had laser treatments to break up scar tissue? Were they effective?

@lkinny

@ellerbracke; @contentandwell I don't visit site often — but am puzzled by recent comments about flexion limitations of "only 130" or 135. That's better than 90% of the population who don't need TKR!! What a miracle it would be to get to 130; to not revert back 15 degrees (every day is like starting over due to the stiffness). Question: How are you able to measure at the gym that you are at 130+ ? On a machine? What machines most helpful besides bike? For those closer to surgery date, I can recommend machine called X-10 — if you can get it for 3 -weeks, it's great. Unfortunately I wish I could have rented it much longer. Later, I had a setback at 5-6 months which I'm not pulling out of , so stiff still. Also: wasn't 6-10 hours a day of PT too much?

Jump to this post

@lkinny : I know that I am super lucky and the exception with good flex. I never considered it as “only”, but as wow! Granted, my measuring is improvised and not perfect, but here it goes: once I have gotten the knee nice and loose when laying on my back doing heel slides, I bring the good knee up into the same position (heel distance from butt). I slowly sit up, double check that I did not cheat, then relax the TKR leg and use a compass to measure angle on the good knee (anklebone to hipbone, with a thin long dowel where the pencil would go in the compass, so it is fairly accurate in positioning). Then the angle can be measured with a protractor. Another indicator would be that when I kneel on the TKR leg (pillow, of course!), I can get my skinny butt to within 3” of my heel with foot flat on floor. On the other hand, it took me 4 months to get full extension, and I still work every day on keeping it! Go figure!
Regarding water exercises for knee bend: I was given a program that involved sumo squats (wide stance deep squats), front bent knee raises toward chest (fast up, down slow), and knee bends (facing pool wall lifting heel to butt, again, fast up, slow down), and lunge walks. I think those exercises did help a lot in making the knee more flexible.

REPLY
@ellerbracke

@lkinny : I know that I am super lucky and the exception with good flex. I never considered it as “only”, but as wow! Granted, my measuring is improvised and not perfect, but here it goes: once I have gotten the knee nice and loose when laying on my back doing heel slides, I bring the good knee up into the same position (heel distance from butt). I slowly sit up, double check that I did not cheat, then relax the TKR leg and use a compass to measure angle on the good knee (anklebone to hipbone, with a thin long dowel where the pencil would go in the compass, so it is fairly accurate in positioning). Then the angle can be measured with a protractor. Another indicator would be that when I kneel on the TKR leg (pillow, of course!), I can get my skinny butt to within 3” of my heel with foot flat on floor. On the other hand, it took me 4 months to get full extension, and I still work every day on keeping it! Go figure!
Regarding water exercises for knee bend: I was given a program that involved sumo squats (wide stance deep squats), front bent knee raises toward chest (fast up, down slow), and knee bends (facing pool wall lifting heel to butt, again, fast up, slow down), and lunge walks. I think those exercises did help a lot in making the knee more flexible.

Jump to this post

Maybe this will help. This is one of the TKR range of motion charts and what those ranges mean in terms of functionality. Replacements are not meant to move more than 135 degrees according to my surgeon. A normal knee may go to 155 (your heel can touch your butt).

I had less than 105 before the lysis. It’s at 132 now when the PT measures it – BUT that is a passive measurement – meaning I have to hold it there with a strap or the PT holds it. It’s painful. On my own active – I’m somewhere between 120 and 125 – meaning no holding. For me the goal is 130 active with no pain since that is my passive maximum.

445A5FB1-F58D-471B-BACD-0C0D8E6D9CC1

REPLY
@melcpa86

Maybe this will help. This is one of the TKR range of motion charts and what those ranges mean in terms of functionality. Replacements are not meant to move more than 135 degrees according to my surgeon. A normal knee may go to 155 (your heel can touch your butt).

I had less than 105 before the lysis. It’s at 132 now when the PT measures it – BUT that is a passive measurement – meaning I have to hold it there with a strap or the PT holds it. It’s painful. On my own active – I’m somewhere between 120 and 125 – meaning no holding. For me the goal is 130 active with no pain since that is my passive maximum.

Jump to this post

Thanks! Very informative! Also thanks for warning not to push any further. Never used strap or had PT push on knee. Current trick I’m using to achieve maximum flex and holding it there for a while is a modification to heel slides. I lift leg, bend it, put toes down first, then gently lower heel. That gives me great bend, and it does not hurt, so I’m sure I do no harm.

Liked by connie1559

REPLY
@lkinny

@ellerbracke; @contentandwell I don't visit site often — but am puzzled by recent comments about flexion limitations of "only 130" or 135. That's better than 90% of the population who don't need TKR!! What a miracle it would be to get to 130; to not revert back 15 degrees (every day is like starting over due to the stiffness). Question: How are you able to measure at the gym that you are at 130+ ? On a machine? What machines most helpful besides bike? For those closer to surgery date, I can recommend machine called X-10 — if you can get it for 3 -weeks, it's great. Unfortunately I wish I could have rented it much longer. Later, I had a setback at 5-6 months which I'm not pulling out of , so stiff still. Also: wasn't 6-10 hours a day of PT too much?

Jump to this post

In regard to your "setback": I had first knee done 6 mos ago during summer warm weather. I live in cold winter climate. My other knee was done in October. I have much slower rehab progress with the second one in that I have severe stiffness. I have great strength and great flex, but it is so stiff that my gait is not back to normal like it was at 6 weeks with the one done in the summer. I do water exercise and within 15 minutes out of the warm water it stiffens right back up. I can warm it up on bike as well, but stiff again soon. My doctor warned me that winter would be more difficult at my 6 week check in November. Boy was he right! Might this be your problem as well?

REPLY

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)

REPLY
@gutthookd

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)

Jump to this post

@gutthookd – Welcome to the Connect Community. You certainly have had a lot of experience with the joint replacement issue. It must have been extremely frustrating. I've had a TKR at Mayo and ready for another one in two weeks. Thankfully, with none of the issues you describe. I was curious whether you ever had your shoulder surgery? Best of luck.

REPLY
@gator1965

I too would be delighted with a flexion of 120 degrees, I am 9 months post TKR , one MUA and arthroscopic arthrolysis and debridment of left knee. I am still around 96 degrees. My surgeon has discharged me, I still have monthly physio

Jump to this post

May i ask, at 96 degrees has it been worth all the pain- Are you finished with all of this?

REPLY
@contentandwell

@damewocane I hope the second opinion will be more hopeful than your original surgeon's opinion. Have you had the lysis, or is he just saying that he doesn't think it will help that much? I sure hope when I have it that it will be helpful, but I am not expecting anything more than 125, tops.
JK

Jump to this post

No I have Not had it-! Thats why I'm asking on this forum if any one else has been told this 50% thing.

REPLY
@gutthookd

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)

Jump to this post

I wish I had had the wisdom to do much more intensive research prior to my (totally successful, so far) TKR. I had 2 shoulder repair (not replacement) surgeries done by my Orthopedic specialist and so trusted his advice and judgement. After being in constant pain for over a year, relief was all I sought, and TKR seemed to offer it. Your comments are an eye opener, and should be flagged to anyone on this forum considering joint replacement. Not to scare them off, but to allow them to ask the many questions that you bring up. Thank you for this post.

REPLY
@melcpa86

Maybe this will help. This is one of the TKR range of motion charts and what those ranges mean in terms of functionality. Replacements are not meant to move more than 135 degrees according to my surgeon. A normal knee may go to 155 (your heel can touch your butt).

I had less than 105 before the lysis. It’s at 132 now when the PT measures it – BUT that is a passive measurement – meaning I have to hold it there with a strap or the PT holds it. It’s painful. On my own active – I’m somewhere between 120 and 125 – meaning no holding. For me the goal is 130 active with no pain since that is my passive maximum.

Jump to this post

@melcpa86 Thanks, this is very informative.
JK

REPLY
@u13496

In regard to your "setback": I had first knee done 6 mos ago during summer warm weather. I live in cold winter climate. My other knee was done in October. I have much slower rehab progress with the second one in that I have severe stiffness. I have great strength and great flex, but it is so stiff that my gait is not back to normal like it was at 6 weeks with the one done in the summer. I do water exercise and within 15 minutes out of the warm water it stiffens right back up. I can warm it up on bike as well, but stiff again soon. My doctor warned me that winter would be more difficult at my 6 week check in November. Boy was he right! Might this be your problem as well?

Jump to this post

@u13496 It is possible that the difference has nothing to do with the weather and temperatures but just that often two surgeries, even when done at the same time by the same surgeon, are often not alike in the end result.
My last TKR was in mid-October, 2017, so there was plenty of cold weather in the following two months and when I was in NYC in December it was quite cold but I did not have stiffness. I don't know anything really about stiffness, not having experienced it, but I would think it could come from scar tissue. That is probably unlikely though since you have great flex.
If it is the weather that is causing the stiffness, then hopefully in a few months when it begins to warm up again, the stiffness will go away and stay away.
JK

Liked by lioness

REPLY
@gutthookd

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)

Jump to this post

@gutthookd John, not only have you had more surgeries and more problems than most of us, but you have certainly spent a great deal of time getting well-informed on the problems with these surgeries.
I had significantly more pain than typical for about 5 – 6 weeks following my TKR in October, 2017. During that time my surgeon was concerned and was seeing me weekly to check up on how things were going. Remarkedly, to my and his relief, the pain suddenly lifted and things have been great ever since.
I honestly did not know how fortunate I was. I would like better flex in both knees, but after reading what others have gone through I realize that is really a minor issue. I hope you are able to reach a more satisfactory point with your knees. It cannot be easy to be going through so much. I really applaud you for having educated yourself so well on the problems with knee replacements. I heard, after I had my second TKR, that 30% of the people who have them are not happy with them. I probably would not have proceeded with the second TKR if I had been aware of that. The first TKR was an absolute necessity, I was in pain 24/7 and limping terribly.
JK

REPLY
@u13496

In regard to your "setback": I had first knee done 6 mos ago during summer warm weather. I live in cold winter climate. My other knee was done in October. I have much slower rehab progress with the second one in that I have severe stiffness. I have great strength and great flex, but it is so stiff that my gait is not back to normal like it was at 6 weeks with the one done in the summer. I do water exercise and within 15 minutes out of the warm water it stiffens right back up. I can warm it up on bike as well, but stiff again soon. My doctor warned me that winter would be more difficult at my 6 week check in November. Boy was he right! Might this be your problem as well?

Jump to this post

@u13496
I have had both knees done-6 months apart-in the last 2.5 years. I did PT weekly in 2 months prior to surgery. Strength and easy to 132. I did well with both knees. Now, I actually forget I’ve had the surgeries sometimes. Time is a huge element. BUT, my knees still hurt when cold out. Once I move around I’m ok. Not pain free but okay. 100x better than pre-surgeries. I totally believe weather plays a big part in how much pain I have. I urge all to understand that you have to realize time WILL take care some of the problems. Be good to yourself.

REPLY

I had surgery last August and developed a lot of scar tissue. Aystem Treatment by a qualified PT got me through the scar tissue. That and an ice machine gave me back my life! It is painful but the ice machine dealt with swelling and eventually it all worked out.

REPLY
@gator1965

I too would be delighted with a flexion of 120 degrees, I am 9 months post TKR , one MUA and arthroscopic arthrolysis and debridment of left knee. I am still around 96 degrees. My surgeon has discharged me, I still have monthly physio

Jump to this post

Dear Gator –

There are still surgeons who sort of "declare victory" (reminiescent of that banner on the carrier deck) at anything over 90 degrees.
In my own case… it's been a process of lowered expectations based on a "self-educating process" over the last 3 years. Not all
expensive educations are "ivy league"… (and in my case discounting the about $1,000 a month for medical insurance – I'm at about
$90+K out of pocket… and counting). When I talk about "expense" – it would be worth it if I could have less daily pain and inflammation
(but you do finally "get educated"). IF… I could ever go back and put that genie back in the bottle… I would NEVER have done this
surgery (knowing what I know now – and continue to experience). I'm still still looking for "a way out", "a way back", … something and
am determined to NOT give up (although I personally know local people in my situation or nearly who have basically done that). There
is no doubt that all this pain, stress, sleeplessness, medications, etc… does take a toll. It's a question of how long the money holds out
and how long my health does (because who knows what else becomes collateral damage – or when ?). It would be a little idealistic to
assume 3+ years of this would have NO effect to my health.

My situation (of the inflammation, stiffness, etc.) is not the situation that most of you will ever face, but some of you will. If anyone out
there is considering a TKR and wanted my advice (and I don't blame you of you don't), I'd say to get a 2nd opinion from a well regarded surgeon who knew he wasn't going to do the surgery (and maybe better if they are a little outside your local area), then…
I'd at least explore what regenerative medicine has to offer (this is improving all the time, but unfortunately can not do much for you
AFTER you've had a TKR… before…maybe yes, after… most likely not). THEN if you feel like you have educated yourself to the extent
possible (and still want the TKR surgery)… DEFINITELY get yourself metal allergy tested (MELISA… there are links online) and then
maybe talk to the surgeon you've chosen (and maybe this should be someone who you have multiple recommendations from people
you know who've been a patient) and have discussions with this surgeon (and also who you're thinking about being your PT provider)
about how engaged they are going to be – in case things DON'T go as well as expected. Then if you're determined to have the surgery,
maybe a VERY good idea to prepare yourself (physically) – and by that I mean exercise daily (or as often as possible – especially your
legs, back, and core (you'll need those stomach muscles to get yourself "up and down" to reach for things you need when you are
largely incapacitated and etc. If you are carrying significant extra weight – consider dropping at least some of this (it just makes your
recovery more difficult). People who tell you "this is no big deal" and is just "minor surgery" are nearly always people who haven't had
a TKR surgery themselves. I had a friend (joking) ask me if I knew what "minor surgery" was ? Answer: That's surgery done on some
one ELSE.
———————————————————————————————————————————————————————————
I appreciate everyone who responded to what i wrote. My intentio is not to be "alarmist" or some sort of "prophet of doom", but to
hopefully help others potentially avoid some (maybe all ?) of what I've been through. I know there are people (and this is a majority)
who are helped 9and some of these helped greatly) by having this TKR surgery. BUT… I also know (now) that this joint implant
surgery "buisness" has become a giant industry and unfortunately we as older folks represent to them (maybe First) "a cash cow"
like no other. I grew up instinctively trusting doctors (even growing up around a family doctor who had treated multiple generations,
knew the family history, and in urgent cases… made "house call". My mother was a single parent teacher in Tennessse – with (4) kids… so that shoulfd tell about how much extra money we had. At that time, I never doubted that my doctor's primary interest and
motivation was my health. I can not honestly say I believe that to be "mostly true" now. What i do believ – is that in many cases that
"First do no harm" has been replaced by answering two questions – which are: Is this proposed procedure on this patient legally defensible ? (yes – in nearly all cases) and Can I get paid for this ? ( which is "yes" – that in most cases… if an orthopedic surgeon
recommends it, your insurance will pay at least a majority of the costs). Despite what you hear about "frivolous medical lawsuits",
these are nearly impossible to win (yes – you do hear about class action cases occasionally, but in the case of an individual "less
than optimal outsome" – these are common and as long as the surgeons stay within the broad confines of "the local standard of care"
which does differ area-to-area… they almost have to perform surgery on the "wrong" leg for you to get a favorable judgement (and
I can guarantee you'll be signing some sort "aggreement to arbitration" – which means you are going in front of their arbiter even in
thevery worst case scenarios… not a judge and jury). No, I never sued anyone in my life and have no intention now… but never
doubt that surgeons have looked at this from all angles "upfront" nd covered themselves completely… the only one suffering any
negative consequences (if any) – will be the patient. That's not "spinning this" any certain way… that's just the way it is (and no
accident that it's that way).
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For the people who have unresolved issues of disability and pain as a result of this surgery (or really, as a consequence of any surgery, illness, accident, etc.) all I can say is "keep fighting" and most of all – don't give up on yourself. BUT… also be advised
that (as a group) we are vulnerable to every possible kind of "questionable medical" scam… most of these very expensive – and
nearly all of these are absolutely NOT covered by anyone's medical insurance. What wouldn't you pay to be able to walk (even
with limited pain – if you can't now) ? I guess the obvious answer is – Anything, nearly (and that's what makes us so vulnerable).
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In answer to Debbra (thanks for your question) – No, I've never had the shoulder surgery (yet) which is (also) in constant pain.
I've been trying to get over the knee first (idealistic me). This has deteriorated to the point of needing the "reverse type" replacement
surgery… and one problem for me being that there aren't a whole lot of options for hypoallergenic shoulder replacement joints in
the US (elsewhere – there is Ceramtec and others… although supposedly there is a carbon-fiber one of these coming out soon…
I hope). Thanks again for the question – and certainly am interested in any suggestions other may have,

Just FYI. I am weight size proportional, exercise vigorously (what I can) daily, and am on a fairly restricted diet gluten-free
generally, but also as anti-inflammatory as I can get (which is not "inexpensive").

I have had ASTYM therapy, but this deals only with surface scar tissue accumulations – not scar tissue literally "in the joint"
which seems to be my problem.

I understand that – my "joint" will not rotate properly (maybe – at all) which prevents the leg from straightening (extending)
fully. Per my previous, I am at about 11 degrees short of full extension (on my own – this can be "forced" closer).

Has anyone out there heard or better yet experienced "The X10 Knee Recovery Syetem" ? Sounds Elon Musk "Space
Shippy" named and no doubt terribly expensive. But… has anyone heard of this or better yet – any direct experience ?

Obviously… my options are pretty limited at this point – and I do appreciate any ideas from others.

And i wish you all – the very best,

John

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