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What do you wish you had known before your TKR?

Most of us found that we didn't know enough about recovery from a TKR before we had it  done.  What do you wish you had've known?  What would have armed you better?

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  • lyn32416 cheryl86544

    Knowing how painful the first few weeks would be. My surgeon said my pain would be "controlled". Liar, liar, pants on fire!

    I wish I'd been better prepared. Leaner, fitter and stronger. Its taken me 16 months of perserverance, tenacity and attitude adjustments to get where I am now. New and improved! Yippee!

    7 Report this reply to lyn32416

    • cheryl86544 lyn32416

      Very good point!  That's what they all say - "controlled" pain.  I was in hospital and rehab for nearly 5 weeks with each TKR and I made myself a promise that I would have ONE PAINFREE HOUR!!  It took weeks, but I got it!!

      2 Report this reply to cheryl86544

    • jenny80029 cheryl86544

      I found my pain was controlled...there was the occasional hour or two when it felt just a bit more than I felt happy to bear, however, as TENS worked for me this solved the problem, and I did not need to up my medications, I would recommend anyone buy a TENS unit, and try it out before surgery. It helped me a lot!

      2 Report this reply to jenny80029

  • sue33011 cheryl86544

    Good question Cheryl. I spent six weeks reading every bit of information I could lay my hands on as well as an extended visit to my orpathaedic surgeon where I questioned everything-from anaesthesia to pain relief to life without a tkr and then some. I tried to leave no stone unturned. I have always lived by the motto-its your body, your operation-step up. But having said that, the one thing I wasnt prepared for was the lack of sleep during those early weeks post tkr. I'd poured over forums such as this but for some reason " sleep issues" didnt register as a possible issue-WRONG!!!!!!!! I can honestly say for me that was the worst part.

    20 Report this reply to sue33011

    • mary96817 sue33011

      AWh Sleep im now 6 months and yes I can finally say im sleeping ok and on any sie I want my next operation is due for the other leg well im on the listy so making the most of the reprieve before i start again On the plus side I know what to expect  sad sad 

       

      1 Report this reply to mary96817

    • sue33011 mary96817

      Like you Im also six plus months Mary and sleeping like a baby. Some mornings hubby checks to see if Im still alive ( wishful thinking lol) Im certainly making up for it now.

      3 Report this reply to sue33011

    • sue33011 lyn32416

      I never slept well-even in hospital lyn and not needing more than paracetamol for pain I used many methods of relaxation -some worked, some didnt. Time was the answer.

      2 Report this reply to sue33011

    • cheryl86544 sue33011

      Yes, my first TKR was like that - so impossible to sleep!  This 2nd TKR I had about 9 weeks ago - totally different.  Even in rehab I could sleep on either side, I couldn't believe it and I felt so lucky.

      2 Report this reply to cheryl86544

    • dolores84206 cheryl86544

      All my Dr. told me is that it is extremely painful. He records each visit and said he explained to the patient of the pain involved and she agreed to the operation. He didn't explain the length of recovery or the lack of sleep that I experienced for months. At each visit he would ask me if I felt better than before the operation and my reply was "no"! At almost 6 months out I feel almost normal, sleeping well, walking well, and back to life! Wish I had asked more questions!

      1 Report this reply to dolores84206

    • Linda ann sue33011

      Yes i also have to agree sleep was a bit of a problem, dont think they tell you enough about any of it to be honest, but i cant knock my hospital they were absolutly fantastic from start to finish, maybe i didnt ask enough questions, but i can say as im sure most of us can that its great to have it done and over with and look back on all the discumforts , thanks goodness for threads and groups like this one.....good luck to all whos been there and to those that are going, you will survive xxx

       

      3 Report this reply to Linda ann

  • CHICO MARX cheryl86544

    1. My doctor's home phone number so I could have harassed him 24 x 7.

    2. Armed?  Beretta 92FS with an SGS Compensator.  One round to his kneecap.

    4 Report this reply to CHICO MARX

  • jenny80029 cheryl86544

    Great question, i think knowing that there would be a bit of a low period around six to eight weeks, and to fix my mind and expectations more on the three to four month mark in terms of feeling able to move forwards more rapidly!

    4 Report this reply to jenny80029

  • louiselost cheryl86544

    What happens if you don't get a TKR?  I really don't want to go through it - have been losing weight (wasn't heavy) and now I'm going to get a referral to a knee specialist to see about shots.

    My mother's friend had the TKR and was in agony for months.  That was a total 'scare-off' for me.  We had no arthritis in the family and when my mother was my age (63) she was playing tennis, walking, etc.  Life, of course, isn't fair.

    3 Report this reply to louiselost

    • CHICO MARX louiselost

      You need a TKR when the orthopedic surgeon has scoped/repaired the knee, removed any arthritis he could and used meds like SynVisc and cortisone for the pain, and then says to you: "There's nothing else I can do."  Then it's TKR time.

      1 Report this reply to CHICO MARX

    • terri90278 louiselost

      Louise, as Chico said, you need it when there's nothing else the doc can do. Always remember, everyone is different & those that had a relatively easy time have no need for this forum. So you're hearing mostly from people who are having difficulty. All the people I know personally, & there are many, are happy that they did it, whether it took 1 month or 6 months to feel that way.

      My advice to you is research surgeons, meet with them & choose one you're comfortable with. Also, get off this forum until after the surgery & you need advice or just someone to talk to that's experienced it.

      Don't know where you live but Hospital for Special Surgery in NY is incredible, as are the doctors, nurses & everyone associated with it. People come from all over the USA and world, although I would think it would be difficult as far as follow ups if you're far away. Good luck to you.

      1 Report this reply to terri90278

  • cheryl90571 cheryl86544

    I had LOTS of swelling with my first TKR...I mean LOTS and LOTS of swelling! 😲That plus the feeling that my entire leg FELT as though it was A TREE TRUNK FILLED WITH CEMENT really unnerved me those first three months! 🌴

    I didn't have nearly as much pain as I thought I might have with this surgery.😄 This made me realize the TORTURE I had been enduring with my pain PRIOR TO SURGERY! 😖😨😵

    On the second morning following my first TKR I was sitting in a chair. Sitting in that chair was EXHAUSTING compared to laying in bed. That surprised me. Then when the hospital physical therapist came and wanted me to "march my feet up and down" as I was sitting in the chair, I realized that the most I could lift my THOUSAND POUND LEG was to lift MY TOES!😖 For a second there I panicked, wondering if he was KIDDING or if he really DID mean that I was actually EXPECTED to do this! My silliness kicked in, though, and I began to giggle!😁 I "marched" my TOES. (Never saw THIS GUY again. I think he though I was a lunatic!)

    I was surprised how ineffective Oxycodone and Hydrocodone were for pain management. I was also surprised at HOW LOOPY they made me feel. I had Oxycodone with my first TKR and Hydrocodone with my second TKR three and a half months later. In two weeks I quit each after my blood thinner shots were completed. I went back to my tried and true Ibuprofen which did a MUCH, MUCH better job of pain management for me.

    My biggest overall surprise was that my second TKR, which was on my worst knee of the two, was EASY compared to my first TKR! I was moving my leg all around IN THE RECOVERY ROOM and discharged a day earlier than with my first TKR. From the get-go it seemed like I was almost even in recovery with my first knee which had been done three and a half months earlier. A HUGE and WONDERFUL surprise!😊👍👍

    In reading all the responses in this forum over the last two years I have come to realize that there's NO PREDICTING exactly how a TKR is going to go. Maybe that's why doctors don't TELL US much! There are SO MANY variables, so many different body systems involved. Even my surgeon who has done thousands of knee replacement surgeries in his thirty-year career has said that a surgeon can look at X-rays, CT scans, MRIs etc., but he WILL NOT KNOW exactly what needs to be done UNTIL HE GETS IN THERE and looks for himself. Then there is the recovery. Each recovery is different. I have NO IDEA why my worst knee with the longer surgery of three and a half hours had such a short recovery time compared to my first knee. I guess we just deal with each situation as it comes and accept it for what it is!

    I WILL say, though that ALL OF IT was worth it for me! Keeping a positive outlook and PRAYER, constant PRAYER were my ARMOR!🙏😄 I looked for small improvements, tried to distract myself by walking around the inside of the house, venturing outside to enjoy my garden, working hard to become stronger with better balance and kept a journal so I could keep a permanent record of my progress. All of these things helped to get my life back again.

    There's no silver bullet to make everything perfect, but there's TIME and PATIENCE and HOPE.

    Here's wishing these things for ALL OF US!♥️

    3 Report this reply to cheryl90571

    • jenny80029 cheryl90571

      Yes, I think what you say about surgeons not knowing is true,..because variation is so great! Until they get into the joint it's not possible to see exactly how things are! As someone with a faith I also found prayer essential. Mindfulness and a lot of casting my cares on my creator!

      1 Report this reply to jenny80029

  • wanda73303 cheryl86544

    Cheryl these are excellent questions.  I was in a pre op joint class, which prepared us pretty well for what to expect physically from the surgery.  Nothing, and I mean nothing, dealt with the mental and emotional aspects you will have post op.  I wish they had discussed the extreme fatigue, withdrawal from pain meds, anxiety and sleeplessness.  I have had all of these and I am now 6 weeks post op.  Everything I read on line tells me these symptoms are "normal" but it is tough going thru them.  I also wish they had support groups for post op patients where we could meet with others who have had this surgery and get some mental and emotional support.  I am trying very hard to pull out of the anxiety and sleeplessness on my own.  I have decided to see my family doctor to discuss the these problems.  When I asked the ortho surgeon for help, his reply was that was not his area of expertise and he could not help.  I think a discussion of the mental and emotional aspects of post op TKR should be mandatory and also offering support groups for pre and post op patients.  Thanks for this forum  

    3 Report this reply to wanda73303

  • judith00931 cheryl86544

    Not even my best friends who had tkr told me how painful it was or that the recovery time was so long.

    3 Report this reply to judith00931

    • wanda73303 judith00931

      I had two friends who had TKR.  One left the hospital able to bend to 92 degrees and used NO pain meds during recovery.  Another friend who had the surgery also did well.  She said the first week was tough, but after that it was much better.  Neither mentioned insomnia, fatigue or anxiety as part of the post op process.  I was not prepared to have such a different experience.  I have advised another friend who is considering a TKR to try every other option first.  This has been much, much more difficult than I ever thought it could be.  I know I will recover; I am thankful my knee is healing well; I am off the pain meds and doing well in PT.  If the fatigue, anxiety and sleeplessness would go away I would be a happy camper!

      1 Report this reply to wanda73303

  • terri90278 cheryl86544

    Very interesting question Cheryl. Honestly, I'm glad I didn't know how rough this road was. When you need it, you need it & even though, at 11 weeks I'm still struggling I know that eventually I will be happy I did it. I'm glad I'm retired bc when I asked my doctor how long before I can work (i work part time as a substitute teacher but only when I want to) he said about a month. NO WAY!!! If I was still teaching I would be very stressed when that month came & I had to tell my principal that I couldn't come back to work.

    The other thing I wish I knew is that it would have been helpful if I worked to strengthen my quad muscles before the TKR.

    2 Report this reply to terri90278

  • pete20617 cheryl86544

    About 20 months since TKR. Did not think I would still be in recovery mode but realise now for me it will most likely continue this way. Also, was not aware that nerve damage would be incurred & take so long to get over.

    Pete

    2 Report this reply to pete20617

    • cheryl86544 pete20617

      Hey Pete, yes very good points!  I also wasn't aware that nerve damage would be so painful.  For  me it feels like someone drilling into my knee with a carpenter's drill and occur pretty much anywhere in that leg.  But it's also positive pain, I feel that happens when the nerves are reawakening! When it's at its most severe I get a rush of advancement in the knee.

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  • mary ann60812 cheryl86544

    What I wish I had known before....along with what everyone else has said......how this surgery totally consumes your life for X amount of time.....weeks, months, whatever.  I had visions of resting comfortably, working on x word puzzles, catching up on reading, etc, but the pain was so intense I couldn't concentrate on anything.  Seconds and minutes seemed like hours when pain isn't controlled.  My pain meds didn't last but so long, and with home nurse, and physical therapist encouraging me to wean myself after 3 weeks, I was in fear that if I took them as needed, I'd run out and my prescription wouldn't be refilled. As a result, I spent a good amount of time crying and just praying for the 3 month mark - Dr. said at 3 months, you're about 70% back to normal.  Funny, how being 30% abnormal is HUGE.  We all want 100% normal!!  I believe I'm there, as best as can be, at almost 2 years!  

    5 Report this reply to mary ann60812

    • lyn32416 mary ann60812

      Totally agree Mary ann. 3 months and 70% is a sick joke and I don't know how or why we are not advised to just plan a year's recovery time. I know no one over 60 who has had a quick recovery. I'm glad for those who have, but it's a dream for many. Someone told me " surgeons just wanna do surgery" and that said it all for me. I tell anyone who asks, " give it a year and see how you feel then". I am pretty happy now but one knee is not perfect. I can live with that. I can walk 5 Kms, travel 3-4 trips of 6 weeks a year. Life is what we make it, once we get to a place where we can cope without pain and regain our lives prior to injury or arthritis. Good fortune to you and all.xxx

      1 Report this reply to lyn32416

    • mary ann60812 lyn32416

      I know, Lyn....Dr's should advise.."be prepared for the long haul".  Luckily I had no set backs and it's been a steady back to life for me.  I'm doing what I did before surgery...with modifications and that's just what I want.  Life IS what we make of it and it's all good.  Now, don't anyone ask about the other knee.  It'll be a long time before I consider it!!  

      Best of luck to you too!!

       

      2 Report this reply to mary ann60812

    • cheryl86544 mary ann60812

      Yes, I couldn't agree more Mary Anne.  it totally consumes our lives for such a large chunk of time.  I couldn't concentrate on anything else either. Your doctor saying that at 3 months you're about 70% back to normal varies so greatly!  With my first TKR I couldn't have said that I was 70% back to normal at 3 months, maybe at 12 months.  With my 2nd TKR I do feel like that. This time my recovery has been so much better.  I saw my surgeon last week and asked him why there was such a difference. He looked at my exrays and said that with my 1st TKR they used the smallest size of implant they could but it's too big for me, so for my 2nd he used a smaller one and tailored it, by shaving some of it off.  

      I'm not letting this news get to me, I am absolutely pushing both knees as hard as I can and I'm determined that the first one won't always be behind.

      Just to explain I'm 4'10".  Seems that everything I have is smaller than anyone else's.  Even my dentist says that when I've needed root canals that they are so small too.

      I had to wait about 11 years for my first TKR, then another 18 months for the next one.  My life has been consumed with pain for such a  long time.  Talk about it becoming our lives - in the 18 months between TKRs I pushed as hard as possible and did hydrotherapy every day, so if there was anything else I needed to do it had to fit around that.  That was a huge lifesaver for me.

      0 Report this reply to cheryl86544

    • cheryl86544

      There's another reason why my recoveries were different, almost forgot! With my first TKR I got infections in both knees, again - if there's almost no chance I'll get it, I seem to.  That made my recovery so much harder.

      0 Report this reply to cheryl86544

  • cheryl86544

    Reading through all of your responses, I think that Doctors think that if they tell us just how awful it could be and that the pain could be dreadful for ages, I think it's feasible to think that they think that if they tell us more about the pain that we'll hone in on that during our recoveries and take longer to recover...

    What do you think?

    5 Report this reply to cheryl86544

    • carol02797 cheryl86544

      Loved reading all these responses and can identify!

      again, this is a great place to get information and understanding. Thanks to everyone who takes the time to respond. Thanks to Jesus for being there for me day and night, in pain and in emotional moments, and for giving me a spouse that is so supportive and loving!

      hang in there everyone!

      2 Report this reply to carol02797

    • sue33011 cheryl86544

      You could have a point cheryl. From the start I asked the ortho to be as blunt as he needed to be. He was quick to point out how no two recoveries are the same and how so much depends on the condition(medically speaking) and mental attitude of the individual in question. I was carrying far too much weight (115kg) six weeks prior to my tkr. He advised that to give myself the best chance of a full recovery, I needed to take drastic steps

      1 Report this reply to sue33011

    • sue33011

      Sorry posted before finishing...

      Drastic steps to aid my recovery. In six weeks I lost 10 kgs and worked out every day. In the six months since tkr I've lost another 12 kgs and my fitness has improved considerably. No doubt being able to move pain free is a BIG plus. For me-finding a dr who laid it on the line and pulled no punches was the best thing. So much depends on the individual but having an honest, caring ortho is also a big plus.

      2 Report this reply to sue33011

  • yasmin66402 cheryl86544

    The dire effects of the pain killers. .that is to say ,constipation so painful and. Protected for the first week post op. .and conversely ; incontinence ..not being able to reach the loo in time and wearing lady tena panties.! Still wearing after 3 months.because my recovery was quite regressed after the initial speedy recovery.

    5 Report this reply to yasmin66402

    • yasmin66402 cheryl86544

      oh cheryl..it was because my poor body couldnt handle the general anasthaetic and the morphine..i had cold turkey ..i'm sure that didnt help!! i was not prpeared for the effect of the morphine and subsequent after effects. i found out afterwards they couldve given me morphine substitute,,which i'm on now!! three months later ! I  dont think that  many people get it quite so perniciously..i wouldve been fibe had the hospital not discharged me before i was ready to go..and go to my elderly mum's house who was not well herself..being at home ., i would haveended up in A& e on the day after..if i hadn't fallen down the stairs already ! i have narrow stairs to the basement where the loo and bedroom is!! onwards and upwards..the rest i knew from reasearch on this fab site before the op, alreadY! good luck with your recovery..most people progress at a satifactory rate/.the older you are , the less pain..and if you've got a titanuim knee..well that;s even better!! 

      1 Report this reply to yasmin66402

    • yasmin66402 cheryl86544

      Why ?what did I say which needs moderating ?.I only told of my experience ..I'm. Not suing anyone or ??? .the hospital was wonderful except on the.discharge where errors were made ...but what needs moderating ?????

      0 Report this reply to yasmin66402

    • cheryl86544 yasmin66402

      I don't know all the reasons they would moderate anything.  The one I do know is that if you included a web link in what you say they do remove it.  Click on my face  <------------ and then click on message to let me know what you had written.

      1 Report this reply to cheryl86544

  • j21370 cheryl86544

    Hi Cheryl-- my doctor never told me much about the surgery. He only told me that I would be all right in a couple of months. To me the surgery was the worse pain I ever had in my life. I had no problems sleeping the pain medicine allowed me to fall asleep at night. However, I would stay up during the day. Only on rare occasions that I would take a nap during the day. Plus I had PT everyday at the hospital. J21370

    3 Report this reply to j21370

    • cheryl86544 j21370

      Wow, he thinks that we'd be okay in a couple of months!! It's one of the most brutal surgeries around. I've had about 30 ops and nothing came close to a TKR!  PT every day is fantastic!  I can only go twice a week and hydrotherapy twice a week, I wish I could do more.

      1 Report this reply to cheryl86544

  • Need1knee cheryl86544

    Top 3 things I wish I could have prepared for:

    1. NO SLEEP! Still none at 10 weeks!!

    2. ANXIETY! Worry about meds, ROM, progress, depression...

    3. LENGTH OF RECOVERY TIME! s. l. o. w.

    But having said that, I'm finally seeing a light at the end of the tunnel. This might actually be a good thing. God is good. This forum is good. My Norco is good. Haha. wink

    5 Report this reply to Need1knee

  • jim9999 cheryl86544

    I was under the illusion that since I was in very good physical shape and my knee not that damaged, that my recovery should be relatively easy.  I expected to be back to "normal" in 4-6 weeks.  What a mistake.  I wasn't prepared to be essentially paralyzed and have to spend the next month rebuilding some semblance of muscle tone.  Also, recovery is glaciallly slow with it being difficult to note progress week to week much less day to day.  It is extremely depressing knowing that this can drag on for months or more.  The inability to sleep due to discomfort and the constant feeling of exhaustion only contribute to the depression.  Make sure you have a long term support system going into this surgery for it is a marathon recovery that will take all the strength that you have.

    4 Report this reply to jim9999

  • Jeannenp cheryl86544

    I wish I had know the lifelong consequence of pain if something went wrong. We all are hoping for pain relief and sometimes you come out worse than you went in. Glad that it works well the majority of the time....I will have to do the other knee. Yes, I am changing surgeons.

    2 Report this reply to Jeannenp

  • Kittenkitten2 cheryl86544

    I thought I was fully prepared for this surgery. I took four months to really dial in my nutrition and strength conditioning.  I have had multiple rotator cuff surgeries so thought I was ready because I knew about pain associated with surgery and the rehab that follows.  Wrong.  First they released me from the hospital when I told them my pain wasn't controlled. After I was home the pain meds they gave me didn't seem to work well so no sleep post operative depression and an overall not feeling well. It's been a month and off all pain meds.  I am just so suprised I still feel like this but according to what I've read on this site all these things are common and 3-6 months all is much better. You're wise to get as much information as you can

    5 Report this reply to Kittenkitten2

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