Fed up

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its 6moths now since Tkr then manulipulation .still in a lot of pain limping badly ,can walk far, can't dance. how I love to dance. Can't go back to work .no energy life sucks , wish I never had it done .

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  • Posted

    Oh dear....have you seen surgeon recently, and what did they say? Are you using sticks or crutches at all to give you support? How far can you walk? How long ago was manipulation? Is the limp because of the leg not being straight? What physiotherapy or other help are you getting, sounds like you are feeling low.
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    • Posted

      Seeing surgeon in August, last time I saw him he promised me I would be better. that was 2months ago there has been no change ,I'm still the same. Using a crutch because leg is not straight and in my eye it will always be like this ,friends say your be fine .but every morning I wake up I'm reminded that I have been left a cripple . Yes I'm having physio  I'm swimming 3times a week go to Pilates once a week nothing but nothing works .manipulation was 3 moths ago .i just need to be me again and that's so hard.

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    • Posted

      It must be frustrating and disappointing and it is understandable you feel low. But try not to speak to yourself with negative thoughts. It might be helpful to access some psychological support, ie counselling, to help manage your mood because this clearly is proving a longer haul than expected. Have you lost your job? You do have help by the sound of it, even if you do not feel like you have at times. Is your pain being managed ok, or is this contributing to your low mood? Swimming is excellent, and Pilates. Concentrate on what you can do, not on what you cannot. Limping is depressing...no good for self esteem, I know, but there is no reason to believe you will be limping forever I don't think. Three months may seem an eternity...But it is three months, made much longer because of your difficulties, but decide to take each day as it comes and find a counsellor or someone who is able to support you in a regular and committed way, because this kind of situation is very wearing indeed and yet somehow you need to stay positive.

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    • Posted

      Thank u for your replay. I'm thinking of psychological  support . Until your in this situation nobody can understand .no haven't lost my job it's in a lovely tea room standing all day I just can't do that anymore .

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  • Posted

    Totally get it. I had to have a bone spur removed 6mo after surgery. Was elated the pain i felt "wasnt all in my head". Got it removed, felt great then scar tissue showed up AGAIN despite my exercises.

    The PTSD of what now, when will it get better hit ALL OVER AGAIN. These crazy expectations we place on ourselves is JUST PLAIN STUPID. The truth is,however, we want a life back wo pain!

    Anyway, 7 1/2mo later, i AM better off than i was preop or day one post op. Am i angry i STILL have to be dealing with scar tissue, YES! But i am and today ---EVERY DAY-- since surgery and follow up arthroscopy has been better but....

    ITS NOT THE BETTER I THOUGHT I WOULD HAVE, OR WANT, AT THIS MOMENT

    and i think thats what makes us ALL crazy.

    Reality is i am doing great next to some people. And when we compare ourselves with each others progress,or lack thereof, we make ourselves nuts.

    I keep saying I WILL NOT JUDGE MYSELF UNTIL AT LEAST A FULL YEAR GOES BY. I do anyway -lol. But, this forum has helped me stay in check and not locked in the looney bin from this emotional roller coaster. I have had a good doc, a good PT (signed off 6wks ago). I am back to work full time. My legs, left more than right, still swell but not like tree stumps after 12hrs of standing on them.

    You WILL get there when you do the work and your body is ready.

    Last Monday was another very dark day because it highlighted all of my "i can'ts" because of my knee. After a cry and a scream, i got my big girl panties back on and made myself say all I COULD DO.

    PERSPECTIVE....is everything!

    We're here for you to remind you what questions to ask and support you in your blah moments.

    Hang in there!

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  • Posted

    New York Times article

    An update on Jane E. Brody's total knee replacement surgery 3yrs later.

    Had this in the article:

    "In a British study of 4,677 total replacements 10 years after surgery, 80 percent of the replacements had met patients’ expectations. Still, 30 percent of patients had a problem, 12 percent needed a revision within the decade, 22 percent had constant or regular pain, and 13 percent had severe pain.

    In a study in the United States more than six months after surgery, just 35 percent of patients were able to do all they wanted to and only 13 percent had no restrictions on activities. In another American study, a third of patients were dissatisfied with their operation 6 to 12 months later. As one surgeon, Dr. Pieter H.J. Bullens, put it, “It appears that surgeons are more satisfied than patients after total knee replacement.”

    We are not crazy. Chico keeps telling everyone about the bell curve....

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    • Posted

      I TOTALLY disagree with those studies that interviewed patients at 6 or even 12 months post-op!!!  You don't really get back to any sense of "normalcy" for at least year.  Even after the majority of the pain subsides, there's so much work to do to get all your strength back.  That alone takes a huge amount of time.

      Then there's the question of people's expectations that they could literally do ANYTHING they did before the operation.  YOU CAN'T!!!  There are definite restrictions on certain activities that pound on the knee (running) or torque it (skiing).  Respondents could report negative feelings just because they can't really do what they used to do.

      I was a statistician for many years.  You have to be careful with "studies".  How they were conducted, the questions that were asked, HOW the questions were phrased, the inherent biases in the methodology, WHO PAID for the study...all of these can lead to pre-determined conclusions, consciously or unconsciously.

      My "Bell Curve" discussion was purely hypothetical since there is no real data and "pain" is a very subjective measurement.  You may declare a pain level of 10 when you cut your finger; my level 10 is a kidney stone (now, with the TKR, the volume knob on my amp goes to 11..ref: This is Spinal Tap).  That's a big difference.

      Just saying to be careful when you read statistics.  There are a small bunch of people on the Forum who are many years post-op...listen to what they have to say.  That's the REAL data.

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    • Posted

      OMG, Chico just breathe! Google the article title and read it. I posted the excerpt to give Lesley a documented perspective that there are people who are not always happy with the outcomes and others who are to be supportive of her feelings.. I cited your reference to the bell curve as ANOTHER opinion that people vary. Again, to be supportive.

      ANY point of view adds to your education with the right to agree or disagree with it.

      YOU choose to disagree with this study but might agree with another.

      Many people AREN'T happy, when interviewed, 6mo out while a doc seems content. Its a shame the study didnt reinterview the same people further out.

      Lets not lose sight of Lesleys feelings in all of this.

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    • Posted

      I absolutely, totally agree with Chico. I'm sorry AuntEG you don't agree with some surveys and disagree with others at all.  There is a right way to run and interpret one and wrong way to run and interpret another. Deciphering results is something else yet again.  You say to consider Lesley's feelings, what about others' feelings? Lesley is down, of course she's down, but no-one can do the work for her, she has to do it for herself, there's no choice and people need to straight talk for people to understand and not ask for sympathy.  Yes, we all get down from time to time, but we keep working because we have to. There is no other way to improve our lives and get rid of the pain.

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    • Posted

      My response wasn't about Lesley...or you...or anyone.  We ALL have felt "down" from time to time during our recoveries.  Some more than others.  Why?  Not a clue.  Do a study...but do it right.

      Back in the "olden days", we used to joke about those statisticians who would "draw their curves then plot their data"...basically pre-defining their conclusion and then tossing out any data points that didn't conform to their intended results.  All very non-scientific, immoral and deceptive. (For example, see studies denying climate change funded by Exxon...duh...like that's a big surprise.)

      All studies start with a legitimate hypothesis THAN CAN BE VALIDATED or discarded through actual, unbiased, scientific testing. Your first criteria for even reading about a study is: Was this study PEER-REVIEWED and published in a reputable scientific journal?  Then: Was the study REPLICATED independently to verify the results.

      However, I digress...  All of this is garbage because the basic premises of the studies in question are virtually unprovable...why?...because they all rely on people's "feelings" about something.  How do you quantify that?  Answer: You can't.  You can try, but the result is probably no more definitive than the latest sex questionnaire in Cosmo.  How do you "calibrate" the distances between expectations and results?  How are those variation colored by the amount of perceived pain?  How must do all those personal "feelings" sway your final answers?

      And then there's the study's methodology..who did they ask and how did they phrase the questions?  There's a big difference between: a. "Do you believe that The Affordable Care Act was good legislation?" and "Was Obamacare that the Democrats rammed through Congress good legislation?"  I did this stuff for years.  It is soooo difficult to ask truly unbiased questions that do NOT affect the results.

      In the end, it doesn't matter if the study is quoted by The New York Times or The National Enquirer.  If the study is crap, the results are crap...sensational, but still crap.  I usually ignore any study whose results rely on people's "feelings"...especially when it deals with pain.

      Lesson: If you want to believe the results of a study, investigate the study.  And yes, Cheryl, you don't get to pick what studies you believe and not believe.  That's your own bias coming into play.  Good, validated scientific research is true, no matter what you choose to believe.

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  • Posted

    Hi lesley, truly sorry for your situation and can relate to your feelings , although only 3 months post op for me plus a manipulation at 10 weeks.

    ?It is hard to believe we ever be better even though everyone says it takes months to a year or more. There are others who seem to do so much more much sooner and our lack of progression is so depressing. I often think it has not been worth the suffering as yet I am worse in mny ways than before surgery although my knee certainly was in a bad way, I felt able to do things and coped better.

    ?I have read all the advice and people's experiences and drawn some hope from them and I have made small steps forward since the MUA, with a lot of work and pain, the flexion is better than before. But the new knee feels like a brick with rubber bands around much of the time. My walking is not good and I have crushing fatigue so like you, unable to work or do many things I would like.

    ?I cannot offer you any advice as others further on than me will be better for that. Except that there could still be time at 6 months to make some real progress, so don't give up hope. But I can understand how fed up you must be. I hope for the good things for us all soon.

     

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    • Posted

      Cynthia-oh my gosh, a brick with rubberbands around it. exactly how my knee feels! I think Doctors and Therapists should not say oh, you will be up and at it by 6 weeks. So not my case anyways. Fortunatley I work in a school so I'm off contract for the summer but I sure hoped to be further along when I go back to work in August. I have my doubts.

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    • Posted

      I do wonder what they actually put in my knee sometimes, but it was a genesis 2 with ceramic prosthetic they tell me. I think they underplay the possible time we will be out of action, as there are those who get back super fast and they base the recovery with a bias that way. Hope you and I make some progress soon, redjanet.
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  • Posted

    If you've had an MUA, you have to restart your "clock" from that date.  All new incision, procedure, etc.  You have to go through this hell, just like the rest of us...

    https://patient.info/forums/discuss/tkr-strong-594566

    https://patient.info/forums/discuss/tkr-and-ptsd-569521

    I'm at 16 months post-op...definitely worth the temporary crap to live pain-free.

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    • Posted

      Thank you.  Unfortunately, some people think I'm being very harsh and strict while my goal is to be realistic but understanding of their pain.  Geez...I've been through it too PLUS I had to cut my recovery short at 8 months to deal with spinal stenosis (sciatica down BOTH legs).  Now I'm trying to rehab the knee AND the back at the same time.

      The biggest problem is that no doctor prepares their patient for both the amount of pain the op causes nor the length of time required to recover from this.  So you can hear true reality from myself and tons of people on the Forum or live in your own fantasyland.  Personally, I want the hard facts so I can stand up to the challenge and deal with it.  Actually doing so makes you a stronger person physically, mentally, emotionally and spiritually.

      Face the demon, stare it down and then kick it to the curb.  This is your life, your recovery...own it!!!

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