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[TKR] Eight Months and Still Looking for Answers

Discussion in 'Knee Replacement Recovery Area' started by Kathy0427, Aug 14, 2018.

  1. momweb

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    @Kathy0427 I had a Baker's Cyst behind my knee with my first tkr. It was also identified before surgery and was not removed during. I had a lot of issues with pain behind my knee which I feel hindered my progress. Now, eventually things got better, but it took about 14 months before my pain had resolved.

    My surgery this time was 2 days before yours and my nights are also still hard but little by little it is getting better. I see the surgeon next Thursday. It will be interesting to see what he has to say.
     
  2. DLR

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    @Kathy0427 guess what?...we are only 5 weeks post op... I know some days it feels like 20 weeks but we are doing awesome you and I !! Hang in there my friend and yes I too have an unresolved bakers cyst but have noticed over the past week it flares and subsides so hoping with time it will drain out.
     
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  3. traceys

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    Hi Kathy.
    Saw a post you had on someone else’s recovery thread and it sounded so familiar. You talked about the bad moments suddenly being good moments and no rhyme nor reason. After reading I let out a huge sigh of relief that you put into words what I’ve felt.
    I have days where I dread getting up and going to my PT appt as I know it will be brutal. Then it turns out so well. Next one exact opposite.
    So glad to have found here and come across such wonderful people who are so eloquent and not afraid of sharing.

    I look forward to hearing more of your recovery with the Bakers Cyst. I had a ton of debris in my knee area from bone chips and bone marrow leaks and surgeon said he “vacuumed me out good” :loll:at the replacement. Fingers crossed yours resolves or you at least get some answers!
     
  4. Kathy0427

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    Well, it’s been a long time since I posted to my own thread so I thought I would provide a quick update.
    So far, I remain optimistic but I have been discouraged by the variable nature of this recovery. I struggle between trying to listen to my OS and a trusted (from my LHR surgery) PT and fellow Bonesmarties. Why? Well, because sometimes - by the way my knee/body / responds daily- there does not seem to be a strict one to one relationship between over exercise and swelling and under exercise and swelling. Sometimes my #@&% knee just seems to have a mind of its own and gyrates between “ good” and “ bad” , so it’s hard for me to become a faithful adherent to one philosophy of physical therapy or the other.
    I guess what I will do is keep trying to rest more (and lay off the exercises) when the knee dictates and still push a bit when the pain subsides. And just keep my fingers crossed that I don’t go too far one way or the other if either extreme causes that awful knee cap tightness and burning.
    God love all of you for being here and please forgive me, in advance, if I don’t always abide by your advice. In the end each of us needs to hear our own bodies and make individual decisions based on what that blinking knee tells us each day.
    Thanks for the support I get each day from reading your entries!
    Kathy
     
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  5. Mutti3

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    We need to listen to our bodies and the new operative knee. It is a balance between rest and movement. My OS surprisely never advised me, because he knew I controlled my recovery. I did well with my knee only to face other “ bumps” in the road of life.
     
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    Last edited: Oct 19, 2018
  6. Softtail

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    Kathy you are right in that there are different roads and philosophies on what is the best way to recover from our replacement surgeries. I am torn between aggressive PT , which I pretty much follow, and backing off when my knee slides a bit backward. At 6 full weeks , I tried some pool therapy Wednesday, and thought that worked my knee pretty hard, and so did my PT therapist that I saw Thursday ,who told me to take a couple of days off from my normal at home exercises, cause he thought my knee was a bit more swollen than usual.

    Thursday night I went to BJ’s with my wife , walked around the store, no pain then went to dinner and noticed for the first time since my operation ,I made it thru dinner without thinking about my knee. For that short period it was like I had a normal knee, and wow that was cool. Point is stressing the knee on occasion or resting knee , still seems to move it towards our ultimate goal down the road, where we get that new pain free knee we go thru all this agony for, so keep reading n sort thru all the great info we get here on the forum, and make the best choices you can that you think are right for you.
     
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  7. Kathy0427

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    Hello, all. Sorry my post might be long. It has been almost three months since I last posted, although I still read your posts every night.

    I have been in a really blue funk about the pain I continue to have. Mostly, my knee remains very painful and has a very “mechanical” feeling to it. I have knee cap “zingers”. I have a lot of pain when rising from a chair and can only walk briefly before pain makes me stop. The pain is centered in my knee cap and is mostly BURNING.

    I have numbness that shoots to my toes. There has never yet been one day where I can honestly say I have felt my knee truly “ getting better”. If it remains like this I simply don’t know what I will do. Yes, I can walk without a cane, but I definitely still have even more pain than I had prior to surgery.

    I made an appointment with my surgeon last Monday about all of this and he took xrays and physically examined everything. Xrays came back with the following notes: “ intact and unchanged right knee arthroplasty without peri-hardware lucency. There is no acute fracture or dislocation. Bones are well mineralized. There is a small effusion.”

    The doctor was very earnest and told me he saw no evidence that I had any infection either. Said it wasn’t necessary at this point to check for an infection (blood test). He did tell me that he has noticed over the years that his patients who are on long term blood thinners really sometimes take a much longer time to recover from the surgery. I was to be on Eliquis for life due to DVT in my left leg in 2015 for which they could find no reasons.

    He wanted me to discuss with my hematologist if I could discontinue the Eliquis for thirty days to see if the pain and swelling under the knee cap would resolve. I did so and my hematologist agreed on a trial for thirty days of my using only a baby aspirin for anti coagulation. But I had to promise to immediately call her with any issues. When I told my OS this news he was sure this would help my recovery and even prescribed some Naproxen for me to use.

    I was discussing this with my brother-in-law today, who proceeded to tell me that I did NOT want to use the Naproxen, as it would cause clots (and he provided a link to a study from 2014 that showed NSAIDs increased significantly the risk of DVT and PE.)

    That had the result of scaring me greatly and making me mistrust my OS who seems to be a genuinely kind and humble doctor. He has a great reputation and does about 110 total knee replacements a year and is even known as a revision specialist.

    He wants to see me in two months and said he would do everything he can to resolve this pain, but unfortunately the surgery is brutal and the recovery very individual. He held both hands and assured me he was “there for me”. He did not think I had an infection and saw no signs of metal rejection.

    Funny, I felt so reassured when I left his office the other day. I thought I had a plan and wanted to trust him.

    But today, with a return of some really difficult pain after walking around Costco, and my brother-in-law sending me all these links warning me about the dangers of stopping the Eliquis and the subsequent risk of a clot, I am just scared, confused and still in pain! It seems like whatever option I take I will be the loser. With my luck, if I quit the Eliquis I will get another DVT or worse; and if I don’t, I’ll never heal and get away from this pain.
    Just don’t know what to do?

    Has anyone reading this post have their trouble recovering from TKR attributed to being on long term blood thinners? What did you do?

    Is it worth the risk for me to get off Eliquis for a month and just use aspirin? Should I try using the Naproxen. The OS told me if I wasn’t on an anti coagulant I could use it safely and gave me a prescription for it. However, like I said before, my brother-in-law found an article from 2014 which cautioned that use of SOME NSAIDs led to an increased risk of blood clots. It didn’t say which ones! And since they never found a reason for my original clot in 2015 and that clot in my left leg is chronic - (ie hardened into the wall of my vein; it never completely dissolved with treatment!). - I simply don’t know what to do.

    Help! What to do? I wish I never went ahead with this!

    Sorry for the gloom. It’s partially why I haven’t written for a long time. I just keep praying and hoping this pain would end instead of just changing its nature from time to time.
    Kathy
     
  8. ebungalow

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    Hi @Kathy0427 I, too, had a blood clot in my thigh that hardened and is still there. It happened 18 years ago after an emergency appendectomy and I did find out that I have a Leiden Factor V blood clotting disorder.But the cause is maybe neither here more there.

    I’ve been taking Warfarin for the past 18 years, and have had three joint replacements in the last 19 months.

    To my knowledge, the blood thinners have not affected my healing. I think both my RTHR and LTKR healed within the average time limits. And my current RTKR seems to be roughly on schedule.

    Is your knee replacement in the same leg as your chronic clot?

    This new RTKR is in the leg that had the clot. That leg has been mildly swollen for those 18 years and its circulation is compromised. I have noticed that the compromised circulation is slowing up the healing a bit.
     
  9. sistersinhim

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    Your knee isn't even 4 months out of surgery yet. That means it's less than 1/3 of the way healed. Does icing and elevating help with the pain? Are you doing too many exercises and keeping your knee inflamed?

    I am going to tag @Josephine, our forum director and nurse, to address your questions and the blood thinners.
     
  10. Kathy0427

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    Thanks so much @ebungalow, for your reply. Sometimes it’s hard to locate people like us who have this pre condition! ( chronic DVT) .

    My chronic clot is behind my left knee. The knee replacement was my right one. Scary part is the left knee is close to needing replacement, too! I had developed my clot in 2015 as my hip went bad. They never came up with a clear reason for it. Did all the tests, I don’t seem to have any of the existing known genetic conditions. My mother was dying at the time and I was caring for her in my house. Great stress. She had clots over the years, too so I have been told that there still might be a genetic component to my tendency but it has not yet been discovered.

    I did end up having the left hip replaced, in 2017. It was relatively uneventful and the recovery was certainly fairly quick. At that time I was on Warfarin. Maybe the fact I am now on a Eliquis changes things??

    Just the fact you told me that this knee replacement for you - the knee in the leg with the clot - seems to be a bit more problematic - just confirms for me that having impaired circulation - and perhaps how it is treated?! - might at least impact how quickly you recover. Seems to make sense to me! I will follow your progress with interest. And I wish you good luck, will try to stay in touch with you so we can compare notes. You are certainly a brave soul having had three of these in 17 months, including both knees! Bless you!

    I sent a letter to my hematologist’s RN to discuss with her my next steps - especially whether it’s worth the risk to go off the Eliquis for a month and also take Naproxen for occasional pain while I am off it.
    On the plus side, I do like both my doctors and sincerely think they are trying to help me. I have suggested they discuss what I should do with each other!

    Thanks to @sistersinhim, too!
    To answer some of your questions: I am five months post surgery on January 15, only a few days away. It doesn’t bother me so much that I still have pain, I expect that. What I can’t accept is that for almost ten weeks now I just don’t seem to be making progress toward becoming pain free consistently. Maybe baby steps, but I do not often feel better. I just remember how it felt when I had recovered from total hip replacement and I had a few good days where I knew I was making genuine progress. I don’t feel that way with this surgery. Pain generally stays around a 5-6 now. I haven’t done therapy for at least a month now. I walk around the little I can before the burning pain starts consuming me. My flexion is 125 and extension a 10 at my last therapy session. I can bend okay and straighten okay; the knee is strong. I am just in burning pain when I stand and walk and it just doesn’t seem to be getting better no matter how much I ice or elevate. Yes, it’s better while I am elevating, but the ice warms up and I am still in pain. I cannot yet sleep on my right side. Today, while walking in Costco I had a very sharp quick pain right in the center of my knee cap that almost took me off my feet. I got home and iced and elevated but I can’t “ rest” it too much as then I worry about clots.
    Sorry, just giving into the depression tonight.
     
  11. Kathy0427

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    :banghead:@ebungalow,
    S:bignono:- S-S-Sorry, just saw I had congratulated you on three joint replacements in 17 months, not the actual 19 months you stated.
    Certainly still very impressive! Congrats!
    Kathy
     
  12. ebungalow

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    @Kathy0427

    For sure - let’s stay in touch.

    And believe me, it wasn’t bravery or anything like that with the three joint replacements.

    I’d been a big ol’ baby for so long with these joints. Probably should have done them years ago, but I was so afraid of medical people.

    Several things intervened to help allay that fear. My daughter became a nurse, and I had a serious health scare that happened when my blood got too thin, my BP got too high, and I had two consecutive serious bouts of the flu at the same time. Medical folks saved my life and were so very kind to me.

    It’s weird, because I always feel so generally healthy.

    Anyway, I finally got over myself and decided medical people really weren’t evil :) and got my bod fixed up.

    You bring up a good point about the possibility of different blood thinners affecting recovery in different ways.

    I’ll follow your progress with interest as well.
     
  13. Pumpkln

    Pumpkln FORUM ADVISOR Forum Advisor

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    Kathy0427,
    @Celle may be able to help answer your questions about your blood clots.
    Gabapentin helps some people with the burning pain you describe, you may want to ask your MD.
    All the best,
     
  14. Celle

    Celle FORUM ADVISOR Forum Advisor

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    That persistent hard area is probably because the blood clot calcified. Sometimes that calcium is not re-absorbed again; it sounds as if that has happened to you.

    I can't advise about anticoagulants - that's a job for a doctor who specialises in clotting disorders.

    @Kathy0427 - Have you mentioned your persistent high pain level to your surgeon?
    I'm going to ask @Josephine to advise you - but she is away for a few days.
     
  15. Kathy0427

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    @Celle I used “doctor” and “surgeon” in my above long note pretty consistently to refer to my OS.

    So yes, I did meet three times with my OS during the last five months and complained about pain each time, the last of which was this past Monday. He is the one who took xrays, basically said nothing was wrong. Did not see any evidence of infection. Says the knee is straight and no appearance of any issues on xray. Did not feel need to do other tests at this point.

    Wants me to discontinue Eliquis for a month and use baby aspirin instead. It is my surgeon who told me that his patients using long term blood thinners seem to take a very long time to heal and seem to have more pain. Beyond telling me “ it’s a long hard road for some” and “recovery is very individual” he wants me to stop the Eliquis , take baby aspirin for a month and while I am not taking Eliquis, to take Naproxen. My hematologist is willing to go along with the experimental baby aspirin for a month. I am waiting to hear back from her about whether I am permitted to take Naproxen while off Eliquis as the OS wants me to do.

    The OS also suggested I use cocoa butter to massage my knee. Said to try this for up to two months and I see him again in March. He definitely knows that I am in pain as I cried the entire time in his office. Like I said, I am sinking deeper into depression as I am losing hope I will be able to get this pain solved or stopped.

    Also, the only exercises I am doing is swimming. Feels good while there but back to the constant pain while walking in my knee cap and right in the front.

    OS did mention gabapentin, but my mother and brother were prescribed it and both had to quit it as it made them very “ dopey” and “ loopy” , so basically I would not like to use it if I can avoid it.
    Kathy
     
  16. Celle

    Celle FORUM ADVISOR Forum Advisor

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    Kathy, it sounds as if you've done all the right things. I'm glad your surgeon and your hematologist are both involved in your care.
     
  17. sistersinhim

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    I've not had a hip replacement, but those who have had one plus the knee replacement says they are totally different in recovery. A hip replacement's recovery is a 'walk in the park' compared to the knee's recovery. I don't know what to suggest to you except to try and be patient. It truly takes a year or more to heal from this surgery.
     
  18. Jamie

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    Kathy, I'm glad you are following your hematologist's and surgeon's advice and not listening to your family's warnings. I know I'm stating the obvious, but unless they have medical training, citing things found with internet searches (and ONE study does not make anything a fact!) should not take priority over the advice of your medical team who knows you better than anyone. It is worth a try to see if this 30-day test works.

    During this time, I would suggest that you minimize your exercise and just let your activities of daily living be the movement your knee gets each day. All that is really required in terms of exercise after a knee replacement is gentle movement throughout the day and evening. That can be accomplished by walking around the house from room to room to do things or maybe even some short jaunts outside. Your main goal is to get the pain reduced and then you can work on increasing your strength. It won't hurt to wait a bit for any of that.

    Best of luck to you and please let us know how you're doing.
     
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  19. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    Not having any expertise in pharmacology, I'm afraid I am unable to comment.

    However, I would suggest you don't take your BiL's opinions too much to heart. You never said what speciality he is in but I would certainly discuss his offerings with your surgeon before you take them too much to heart. He doesn't know all your history either which makes a big difference.
     
  20. Kathy0427

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    @sistersinhim, I would agree that hip replacement (at least for me), was a “walk in the park” compared to knee replacement. Thanks for your ongoing advice. Your thread is a source of inspiration to me!

    @Celle, I do plan to go with my doctors’ advice and try the thirty day trial of baby aspirin instead of Eliquis with the aim of lessening inflammation.
    The one remaining question have for my hematologist is: what does she think about the me using also Naproxen for this month while I am on baby aspirin instead of Eliquis?

    @Jamie, thanks for your input, also. I will keep in mind doing the ADL this month instead of PT exercises while I do this “ trial” of baby aspirin. As you and @Josephine point out - much better to go with the advice of my real doctors versus Dr. Internet! If I trust them as I say I do, I need to “ walk the walk”, instead of trusting a brother in law who is trained in biology but is not a doctor. I am sure his heart was in the right place, but I need to make a choice to go with the professionals here.

    @Josephine, BiL is NOT a doctor. Best to listen to the pros. Point taken!

    I’ll let everyone know what my hematologist says about using Naproxen for the one month time period to help lessen the inflammation while I am on baby aspirin. Will let you know how I progress when I start this “trial” after I hear back from her.

    One last thing: my mental outlook has improved quite a bit in the last few days. Although the pain is still there, simply reading the many stories on this forum about people such as me, who have longer term pain, I can see that there are many happy endings and the pain DOES resolve. Most seem to eventually find the source of pain - and it gets corrected - or things eventually settle down in our own individual time frames. All of your stories have renewed my hope and I thank you for them.
    I certainly just need to keep trying to maintain a positive attitude . Your stories are inspirational.
    Thank you.
    Kathy
     
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