Asking for advice

Posted , 12 users are following.

This may seem odd coming from me I have been thru a lot of  what most of your are experiencing with a TKR. I can suggest many different things from what to expect after the OR till you leave the hospital, what to expect from when you get home I know you will have at home care to monitor blood and at home PT. I understand how after 2 months you get so frustrated it drives you nuts and even after 6months and further down the road I get it. I have been thru it I know first hand it really sucks. I try and offer help since I have been thru this too many times but I am not perfect. Some of you get depressed after less then a year or maybe farther down the road Well here I am I think it flat out sucks that I have had all these knee surgeries I hate it when my knee hurts its one thing if you have never been thru this  but how do I ask for help when I am flat out miserable. I have had a bad weekend today my pain is pushing the 7 mark on the 1 to 10 scale for pain. Who is going to say something that I have not tried . If I thought goiung to the ER would help I would be on my way but  having done that in the past its pointless having a knee problem is not rated very high as far as priorities go. I hope no one has to go thru what I am dealing with I really hate it. 

Sorry for the rant in case your bored and you read this, I am very frustrated.

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  • Posted

    I understand. The thing that helped me is to realize that tomorrow is another day. Be nice to yourself and do something fun. It does get better and you develop a lot of patience. Hang in there.
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  • Posted

    Hi

    I really understand where you are coming from. I am in so much pain. I had a pkr five weeks ago. I feel sick with pain and no sleep. It is so depressing. My days seem too long and my nights are spent in total pain. I am trying so hard to get with it. But It does indeed suck. Wishing you better and hoping all will be good.

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  • Posted

    I appreciate your thoughts and really I also understand the word patience but put yourself in my shoes and for some of the not so nice people I do not feel sorry for myself I hurt. I can understand 2 or 3 surgeries which means you might have a couple of scopes prior to a partial or even a TKR that I get however 17 surgeries 5 of them were TKR's all on the same knee. I have been on pain meds for maybe 4-5 years straight there might have been a break but its like every 2 - 3 years something goes wrong.  Patience yes I understand but patience only goes so far and as it stands I am reaching my limit. Maybe tomorrow will be better this just really sucks and I hate it. How do you account for pain when you have done nothing or the weather changes its easy to say I did too much but for example today I walked around an Elementary School ( 6/10ths of a mile ) that is it. Sorry for all this I should be upbeat and say it will get better just be patient YEAH RIGHT!! I think its time to call it quits for today its early 4pm but I think laying in bed with ice might be my best option. Once again sorry.

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    • Posted

      You never have to be sorry. You are in pain and we all understand. By telling us your story you are truly helping someone who is suffering. I am praying that you will find relief. 
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  • Posted

    I totally get it. While we all may be in different stages of the journey....it seems all bad. Pain is pain. And bad pain is bad pain!  I get that patience is key but that’s even hard when in constant pain. I had a period of better times but setbacks are hard to swallow too. Apparently they should be expected but they are still hard. For me, pain meds help the pain but don’t do much for my mood or attitude. No wins here. Hope you feel better soon and brighter days are in your very near future!
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  • Posted

    I wish I had an answer for you. Pain just sucks and doing all the right things and still having intense pain is so much worse. So vent, cry or whatever helps some. While nobody has been you we all understand pain. Prayers you will find relief.
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  • Posted

    I'm so sorry you've had to go through this.  Pain that becomes a way of life is just s***.  I had a TKR left leg in February 2014.  It was infected in the OR and I went thru pain hell for 3 months before the surgeon acknowledged that my hot, open draining would was covering an infected joint. Took it out.....a 3 1/2 month hell with IV antibiotics, groin to ankle immobilizer and no weight bearing and no knee.  Infection gone, new knee in and I should be golden, right? Nope, constant pain in replaced knee even 4 years later, my right knee is now TERRIBLE and both hips need to be replaced.

    So , what have I learned? I did everything right (as I'm sure you did) and now go thru life with pain worse than I started with.  I'm sick of people providing veiled comments about what I must have done wrong, or what they did better. I'm pretty sure it's a crap shoot and you and I ended up with crap.

    Keep going my friend.  I fully believe that someday there will be light at the end of the tunnel.....we just have to get to the tunnel. At this point you must have a raging case of PTSD to go along with your knee nightmare. Getting that treated helped me enormously.

    Don't give up. Keep searching for what can help you out of this mess. I'm thinking of you.

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    • Posted

      I had an infection a TKR stinks but an infection I must say is much worse. Yesterday was just in a foul mood.Pain and I do not get along. I went to bed read for awhile and slept. When my knee is throbbing and it was suggested to someone else putting a pillow between your knees helps. I have already imagined what this new surgery is going to be like and that is bugging me as well its not the TKR part its reconstructing the tibia so they can fit the implant.. I am also fairly sure in my mind it's worse then it really is but I was told already this was going to be complicated YUCK.

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  • Posted

    sorry to hear what you are going thru, everyone is going thru the same, maybe there are some that are going well, i am 3 months in now, my knee has gone down quite a lot, still swollen, in myself feel ok, but my knee still gives me griefe. wake up in the night after getting about 2 hours sleep, meds not really helping. may have to get stronger ones, what can i say, stay positive, dont over do your exercises, massaging my leg gives me some relife. be patient, have you tried sleeping on your side with a pillow between your legs, plenty of icing, and elevation. good luck.
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  • Posted

    Once again sorry for the rant. Thanks for the replies as well. Its one thing when you go thru a TKR once or maybe twice ( both knees ) but in my situation 5 ???? I have asked repeatedly am I doing something wrong and the answr is no. I am keeping my fingers crossed that when I see the Specialist May 15th I will get some answers also pretty sure I am not going to like what he has to say. My hope is once it's all said and done I will feel better.

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  • Posted

    Hi,

    i can relate.  Had TKR 9/16.  Worst recovery experience of my life.  Other knee like yours on the scale.  Afraid of another botched experience.  Everyone else I know (seriously) sailed thru.  No pain, PT successful.  Said they were so happy they had it done.

    So tired of being in pain.  Most of the time I want to be in bed.  Am on Percocet for back, thank goodness bc I’d have no relief.  

    No, no one really understands how your knee can hurt that bad and cause you to walk funny.  

    Ortho discharged me 6 months post op the day after I slammed myself onto hardwood floor on both knees.

    got new ortho who would not touch TKR knee.  Sent me to back dr bc they thought that was reason for knee pain.  Back dr.  Wanted to send me to PT for arthritis in back.

    i give up!

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    • Posted

      It really annoying when your in lots of pain the surgeon you really liked retires and refers you to another surgeon. the new surgeon does not bother to do anything x-rays labs nothing after 18 months I had enough switch surgeons. I explained the issues he examined my knee wanted lab work done and a bone scan. Lab results great, bone scan lousy now I am waiting to see another Dr. who treats bone and cancer patients for bone loss. Its going to be fun.
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  • Posted

    I am so sorry you are feeling so blue but I COMPLETELY understand. I'm 7 months post and have had numerous surgeries on the knee prior to the surgery. No one understands the pain we go through, the frustration, the anxiety, the depression. My husband and family just blow me off and I've taught myself not to even bother complaining. If they ask how I'm doing the answer is always "fine".

    I'm known as "the broken one" because my knee has caused the rest of my body to become all twisted and now I have back pain, ankle pain, neck pain, the list goes on. It SUCKS!!! If you ever need to vent again I'm here for you because I get it.

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  • Posted

    Well overall better then the past few days but to e a good day on the pain scale is a 5.5 a horrible day like right after surgery is an 8-or 9 I do not believe in 10's only because to me if your in that much pain your dying. So anyway tried to relax but daughter wanted to go to the store no an eventful day for the majority of the day nothing that would cause it to start hurting  more. I did find out all the pain I am having is resulting from the improper alignment and the loosening of the components. I was hoping the pain would not be as intense but I was wrong. Now the fun begins waiting to see the new Dr. and dealing with increased pain as time goes by. This may seem morbid but there are times I get so frustrated I almost wish they would cut it off but my luck I would have phantom pain and how do you treat something that isn't there.

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    • Posted

      Lol, you're not being morbid at all. I have actually dreamed of my right leg not being there and being pain free only to wake up and feel the damn thing and feel the pain I wake up every morning with. It makes you start your day in a foul ass mood and no matter what you do you you just can't get out of it. I have a 14 year old son who has pretty much grown up with a mom whose been in and out of hospitals and is always in constant pain. Vacations have been ruined, family get togethers canceled, and sex with my husband almost obsolete due to the pain. It makes for a miserable life. I hope you find some relief soon because this is no way to have to live.

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    • Posted

      Speaking of vacation since the new Dr. is also on vacation I figured it would be a good time to go. I see him on the 15th. He will not be back to the 11th. I love where we go on vacation 1000Islands of NewYork. Its beautiful up there. Anyway it is a 11 hour drive and yes we make stops I can only keep my knee bent for so long. The problem I love to fish and out cottage is on higher ground then where the water is so I will have to go up and down not going to be fun. So as much as I love it there this time is not going to be but so much fun. If I do not go I am afraid that depending on when I have the surgery how long I will be in the hospital and the recovery time no idea? Ask me about TKR I have it down pat this clueless since they are going to have to reconstruct the tibia due to the bone loss from all the other TKR's I have had now there is nothing left to mount the implant on. I hate not knowing it drives me nuts. You have a husband at least you have an adult to talk to. I have been divorced since 04 no girl friends. Friends yes but nothing other then that. I so sick of this garbage totally hate it.

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    • Posted

      God, the not knowing is scary. Sometimes I think it would be better to just remove the damn leg and replace it with a bionic one. I just came back from a dermatologist appointment to have skin cancer cut out of me(yup, one more thing to add to my book if sorrows) and was in more pain of having to lay down in one position for a length of time then the actual surgery to remove the cancer. The doctor asked why I was so uncomfortable and when I showed him my knee he was shocked. He couldn't understand how my knee surgeon could think my knee looked ok. I believe that these surgeons are just concerned that the mechanics of the knee work properly and tough s**t if you're not happy and still in pain.

      Have you ever been advised to see a different specialist like a rhumatologist? Just asking because my pain management doctor (who is more concerned about my knee then the surgeon who did the TKR) mentioned that there might be something else going on in my body that is causing all the pain and not letting my body heal. All of my surgeries have had complications (and I've had a lot, not just my knee). I never heal by the book if I ever heal 100% at all. My pain management doctor is thinking it may be some type of auto immune affecting my bones and scar tissue. Sometimes I think you have to look outside the box to find answers, especially if you don't fit the norm of how a patient should recover.

      I'm sorry you don't have someone closer to lean on but honestly, although I'm married, I still feel alone in this because unless they've been through the pain, anxiety, anger, and guilt we go through, they will never be able to understand. I envy the people I read on these posts that are recovering by the book and doing faboulous after only a few months. I hate to admit this but I feel some comfort knowing I'm not the only one going through this hell of never feeling good. I know it's a crappy thing to say but it helps me feel that I'm not going insane and that this pain isn't just in my head. Oh, and trust me, I've had A LOT of people telling me it's all in my head, even my own mom.

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    • Posted

      The Specialist that I am going to see from what I have been told is 1 of 3 in the U.S. that does the kind of surgery I am going to need. So I think I am okay there but what is getting to me I know pain lived with it for quite a while but the way my knee feel right now it really sucks. I like you read all the posts and the funny part for me I remember when I had those same questions and if you really read them everybody is pretty much asking the same thing just wording it differently. I read a post a woman was 6 weeks post op she went back to work knowing she had to do a lot of walking and then asked was it normal for her knee to hurt so bad?? DUH!!! She also asked if she would be able to play golf and walk 3-4 miles soon.Some people are just amazing.I am not an expert at TKR's but I have had 5 also many partials scopes etc and I do not have a chart written up like Chico on what I should do when but what I know is the same as him its just I have it in my head.What is getting to me the Dr. that referred me to the specialist said this is going to be a major surgery and I asked a TKR is a major surgery, he replied you do not understand this is going to be complicated and it will take some time in the OR and he emphasized it is going to hurt ( more then once ) so now you get a feel for why I am nervous I know a little but not a lot and add lots of pain to all of this life is just frickin GREAT 

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    • Posted

      That is nerve wracking. Is there any way you can find other patients (if there are any) that have undergone the same procedure that you can talk to? Maybe the surgeon doing your surgery can refer you to someone that can explain the recovery, somene who has experienced it? I know it's a long shot but it's worth a try. I can't even begin to imagine going through a TKR numerous times. Why did they have to do so many? Was it the surgeons error or your body not accepting the replacement?

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    • Posted

      I had to go back to work at 6 weeks bc I had no choice.  It was rough but I managed and did really well, but didn’t encourage and extra trips anywhere. Some of us have no choice when it comes to work....now golf?!? That’s another story for sure!
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    • Posted

      The Dr. that referred me said he could do the surgery, it is complicated not only because I am going to need a special implant but fixing the Tibia when you look at your x-ray or any for that matter where the bottom of the implant sits ( not referring to the long thin part that they have to drill into your tibia ) that part is gone and besides that since this was my 5th TKR the rod goes halfway down my leg between knee and ankle its all got to come out. So first he has to fix the bone issue ?? then he has to do the implant. I would rather have a TKR many times over then this YUCK!! When I see him on the 15th I am going to ask what the procedure is called what is involved and probably get good a drunk afterwards!!! I have no idea why some people do really well my mother is 21 yrs older then me and she has had both of her knees done and she walks better then me. Now I am back to using a cane. Now I need dark sunglasses messed up clothes a stupid sign with a tin cup asking for handouts. I do not wish anyone has to go thru what I have been thru and still going thru. 
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    • Posted

      Before I went in for my surgery my doctor warned me that my recovery will be tougher then the norm. One of the things he said was because I am younger (just turned 46) that my recovery will go slower then an older person and the fact that I had so many surgeries on the leg prior, the healing process would be longer and more painful. I doubted him at the the time but now I completely agree. You would think the older you are the longer and harder recovery would be. Also, tkr is apparently the hardest surgery to bounce back from. My co worker just got her second hip done (one right after the other) and she is about 20 years older then me and she is already walking up and down stairs as if nothing happened. Meanwhile I'm still taking one step at a time and shuffling around like an old granny.

      Yuck! Your surgery sounds awful!! I really hope your surgeon gives you as much information as possible on what to expect. I'm assuming you are on pain meds right now? Are they going to increase them? Just asking because my surgeon was hesitant to increase mine after surgery but luckily my pain management doctor understands what pain can do to you and bumped them up but now I have to start cutting down and life is miserable.

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