Is everyone happy with TKR results except me????

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I had a TKR of my right knee in 2014 (early in the year). I did well for about a week and a half. Then pain increased, my ability to walk decreased. My wound opened began draining at about 5 weeks post op. I did exactly what my surgeon suggested ( no wound culture, no tap, no antibiotics, worked hard to febrile a get the wound closed. Constant, unimaginable pain.....exponentially more than initial post op period. I told him repeatedly I felt that it was infected, that I felt I was having too much pain. Day 85 post op I could not touch my foot to the ground without excruciating pain. Labs showed likely joint infection and tap of knee confirmed it.

1 week later joint removed and antibiotic spacer placed.....worst day of my life from a pain standpoint. Went home with a PICC line and 8 weeks of IVantibiotics, Groin to knee immobilized ....I lost 55 pounds, my eyelashes and lots of my hair. A new knee was placed after 12 weeks and went as planed. I'm left with neuropathy in right leg, ongoing knee pain as well as pain from the neuropathy. I hear people say " I tease arched my surgeon so I didn't have problems"...so did I. "I did antibiotic showers and had antibiotics after so I didn't get infected" so did I. I did exactly what my surgeon told me and did my PT so I didn't have any problems"....so did I. I'm left with pain and made to feel like it's my fault. My other knee is just as bad....is anyone pain free after this? My right leg is ruined....terrified to "fix ". my left. I did my best; why can't people accept that I didn't cause this?

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  • Posted

    Hi Jeannenp, 

    I am so sorry this has happened to you. I am helping a very young man on another group Hip that has lost his his hip due to infection 6 months post op.

    it is highly likely you got this low grade infection from the surgery itself.why are people saying its your fault ?

    as far as the neuropathy have you been prescribed gabapenitn/ Neurontin, or Lyrica they help with nerve pain.

    i also know a lady that has a low grade infection in her knee, and she has been put off surgery to remove her knee until end of March, I told her that was unacceptable and if she got sick she would be really unwell she also has Rheumatoid arthritis. I told her to get another opinion it's not like she has anything else to do until  March as she can barely walk...

    her surgeon is too old I know who he is, but some people just don't want to know. 

    I hope you can get some relief soon.x

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    • Posted

      My infection was acquired in the OR. This was confirmed by my surgeon; it was pseudomonas and another pt acquired it the same day, same surgery, same surgeon. I was symptomatic a week after the surgery.

      I am treated by a neurologist and have been treated with gabopentin and Lyrica without improvement. She has said that at this point my situation is unlikely to change.

      I am comfortable that his was not my fault. It is upsetting the way people respond to my plight.....like "buck up sweetie , what a wimp".

      I appreciate your response. At this point, I just live with it!

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  • Posted

    You poor, poor thing.  How awful for you, of course it's not your fault.  Alas, there's alway a risk of infection and we are told about it before surgery but this doesn't mean that we're suppose to accept it if it happens.  I was lucky by all accounts.  I had a bilateral tkr at the beginning of October.  All went well so it seems, although, I did have a high temperature for around 8 days while in hospital.  They feared one of the knees was infected but it was my chest, two collapsed lungs, sigh.  A month after the op, I got a rash that started at the knee and went up to my thigh, then started on the other leg.  The surgeon at my checkup feared an infection and I had to go back 2 weeks later.  Rash was still there but he wasn't concerned.  I treated it myself. Thankfully, all gone now.

    As I've  said before, different things happen with different surgeons and different countries.  It shouldn't be happening these days.  If operating theatres were cleaned like they're supposed to and prosthesis were sterile, infections as bad as yours shouldn't happen.  When it does happen, like with you, they should go out of their way to fix it.

    I really feel for you.  You must feel so miserable, especially with Christmas so near.  There but for the grace of God .........I hope things improve for you soon.  Don't pay attention to people that don't support you.  You need caring, positive friends and family around you.  You will get through this.  

    Please know im sending love and positive thoughts your way.  

    Sue xxx

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  • Posted

    You poor thing, I know how you feel with regard to other peoples reaction to pain.  It is invisible, if they can't see it, it can't be. Even when you use a cane, they can't see you.

    My left TKR is over 11 years old and I have not been out of pain for over 10 years , but the one thing that eventually helped me cope were Guanethidine Blocks.  You have to have a light sedative beforehand, a tourniquet is put around your raised thigh and the block is injected into your foot. It washes the nerves with an anaesthetic and calms them down; for a few days/week after you may experienced more pain than ever but, that wears off and you should experience diminished pain, if you are lucky it should last 3 to 6 months but you must have quite a few on a regular basis in order for it to work long term. The reason for the sedative; as the Guanethidine fluid enters your foot and works it way up your leg, you feel as if you are on fire inside your leg. Once done you rest until the sedative has worn off and you are discharged from the Day Surgery, You are supposed to have someone with you for 24 hours (you just sleep) and take it easy for a week or two after. This is not an alternative to the meds ou are already on, it is as well as.  Worth a shot!  Pain is never your fault, it is if you don't do anything about it, so kick up a stink.

    The downside is NICE, you need a strong willed pain mananagement consultant on your side to say you NEED this treatment (apparently it is so expensive they are loathe to permit its use).  Hope this helps

     

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  • Posted

    Omg you poor thing! Horrific!! Of course it's NOT your fault!! How could it be!! They warn you before surgery there's a chance of infection😱But u pray it won't be you! You're just really unlucky it got you!

    No one really really tells you of all the pitfalls with joint replacements. Bit of a minefield I'd say.

    I had my right knee 2.1/2 years ago, all was pretty fine( to a point) I've always known I've got it, if you know what I mean, the little "click" the weight of it, etc.

    7 weeks ago I had a full hip replacement on my left side( opposite to knee) All great until my knee, from taking the strain off of the other side, just started playing up big time! Well actually Hamstring,which has caused my knee to go into full spasm and pain and instead of walking walking walking for the hip the last 6 weeks I've been virtually laid up unable to walk! The pain and swelling are awful! I'm on pain meds, pain patch, pain machine, I've , Physio, ultrasound and soon a cortisone injection. Now it seems to improve for a few days then go again!

    My life is on hold! My hip needs strengthening and my knee now is weak! My knee bend is worse at the mo than day after knee op. Ironic!!

    Thinking of you. Xx

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  • Posted

    You and I are in the same club with a few differences in the initiation ceremony. Mine started with a revision in Jan 2013. The following day I fell and caused a torque or twist break to the femur. A hip to knee plate was inserted with 8 screws. This was supposed to be a lifetime marriage but 5 months later after a very good mend to The bone and rehab to the knee the plate started irritating the skin an was removed at the 9 month Mark. 28 days later the high fever, Nassau and heavy drainage started. An emergency surgery to clean and flush the leg then 8 weeks of twice a day infusion antibiotics then 900mg of clindimicin daily. Somewhere around the 8 month period and after passing out from low blood pressure and a bladder infection the epi staph (infection from the skin or hair folical) came back an this time the knee was reopened and prosthsis removed, cleaned, flushed and immobilized and the antibiotic infusion repeated for 8 weeks. After 16 weeks of immobilization and toe touch weight bearing the new hardware was inserted and immobilized for another 4 weeks. Then the PT was reintroduced to get ROM which after 3 months hit 110/0. I am now working on strengthening and looking at another 8 to 12 weeks of hard work. Surgeon says due to my 11 surgeries and radiation (my problems all started with a rare tumor , pvns) I will have residual pain to some degree the rest of my life. I will be 79 in Feb so its not like I've got another 20-25 yrs of this crap facing me. We have a nephew that is an infectious disease doc at a west coast teaching university. His diagnosis of the staph is this: everyone has enough staph on their body to kill them but 97% of the population has an immune system strong and effective enough to fight it off. People like you and me aren't do lucky and all the scrubbing and disinfection pre op isnt going to give us a free pass on the toll road of infection free surgeries. Blaming the drs, the hospitals and surgery theaters is just an excercise in futility. When I had my 1st tkr in 2004 I was told the 2 biggest fears were blood clots and infections.

    As far as giving up on the leg as a lost cause I suggest you think about starting over in PT and take a very slow, methodical approach to rehabbing. Do the excercises, icing, elevation, rest, heavy hydration and lots of rest. You may never be an athlete again but at least you'll have some use of the leg and a better mental state. I have one additional concern that motivates me. My wife of 57 years is in a declining health situation with advanced Parkinson's disease and can no longer drive or do much around the house. She tried valiantly to keep on going but can only do the very basics of cooking and housekeeping. We have a lady come in every couple of weeks to do deep cleaning but the cooking, laundry and all the running is on me. I push myself to the point of exhaustion many days but still know I must do the basics to continue my rehabbing as I don't dare let myself go. You have a tough journey but do not give up.

    As far as others and their mindset........you aren't going to change that. Narrow minded ignorance is just that. You have too much work to do to accept their problems. I had to tell a couple of my so called friends to go screw themselves. I had far to many problems to try and solve theirs. A couple quit coming around. So be it, I'm better off without them.

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    • Posted

      ..........As I've said, in a couple of my "inputs", it depends on the surgeon and country your in.  I wouldn't doubt your nephew knows what he's talking about when it comes to staph infections but I've also worked at a hospital theatre for over 10yrs.  I've seen surgeons time and time again, leave theatre, in their cover all gown, go to the shop and back in to theatre.  There are sick people at hospitals I'm sure you'll agree.  Germs everywhere.  The touch buttons in lifts, rails on stairs and doctors do the same.  There is disinfection hand cream everywhere but I've seen hundreds not both to use and as for actual hand washing, phew!

      About 4yrs ago, I got a cracked heel.  The skin on my heel was so dry, I was always on my feet, always had stockings and closed in shoes but I got the dreaded " golden staph". It was a black hole that hurt so much and smelt terrible.  I was put on antibiotics but looked after the wound myself.  Eventually got rid of it, scary stuff.  My leg was already weakened by post thrombotic syndrome and ulcers I get from time to time.  I thought I'd lose my leg for sure but it's still there, new knee, no clot, no infection.  I thank God it went so well.  

      Life is is a lottery.  Some of us fend better than others but no one is more deserving. We are all equal there.  I used the public system.  Didn't cost me a single dollar for two new knees.  I can't complain.  I feel very lucky when I read how some, like poor Jeanne and yourself suffer.  I'm 59 by the way.  I had to wait 3 yrs because they reckoned I wasn't old enough. 

      I love over this forum.  It's so good that we can advice and support each other.  Thank you all.

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    • Posted

      My 1st tkr one of the nurse's had taken off the dressing to change it and accidentally dropped ti on the floor and then picked it up and started rubbing my leg checking for heat. My wife happened to be sitting there and chewed her out for not at least washing her hands before and after. All she got was a shoulder shrug. She then told the surgeon and wrote a letter to the director of nursing. All of which was answered with a mild apology and a couple of excuses. What they didn't know the asst to the hospital admin was a friend of mine. When she called him things started changing and apologizes were more sincere
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  • Posted

    In some weird way these discussions help me. I felt like a "failure" since it felt like just me. I'm lucky to have full ROM.... I'll get past this pain . I'm young(60), my husband and my sweet grand baby need me. I told my grand baby who is 4 and wanted to do puzzles that I had trouble getting on the floor. He said " I'll show you how, just so this." Out of the mouth of babes.

    Nice to have people that can relate. My deepest gratitude.

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    • Posted

      Welcome to the young (**) club. One tip to get up/down of the ground; sit on the edge of a comfy seat/sofa and slide to the ground, the way up is to twist slightly and use said chair/sofa to haul yourself up again.  You'll certainly win brownie points with your grand baby.
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  • Posted

    I'm not happy with my first knee replacement done in 2012. Although I didn't go through infection like you have, I was still made to feel that it was my fault that my new knee didn't feel right. I did everything I could and I wasn't progressing. There was so much pain. I had to have my knee manipulated under anesthesia to break up scar tissue. Three years have passed and I had the other one replaced 7 weeks ago, different procedure, different surgeorn, different type of prosthetic. It's still painful but it's working well and I know that the pain will subside.

    People that have had very successful replacements without post-op complications just seem to look at us as though we're unusual and perhaps we just didn't work hard enough at rehab. It's major surgery on a weight-bearing joint and not everyone heals the same. There are so many variables that effect outcomes, and I wish I had been prepared to expect disappointment before my first surgery. Of course, we all want to think positive, but it doesn't always happen that way.

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    • Posted

      Yes, we are unusual.  We are the odd ones out.  Wear it like a badge.  Who wants to be the norm!!!

      Pain is no joke, but we do have to live with it. To be upset with our outcome is depressing and debilitating so, think of yourself as a minority.  Minorities have more rights than those who are ok (except for those who know how to milk the system, don't get me started on that subject!!!!).  We can get away with bad moods, we can insist on getting that last seat on the bus, we can get ferried around airports terminals  (if we wish to), we can park our cars practicably anywhere.  We are also more tolerant.  I would love to have no pain, that is not possible, so I have learned to live with it, not allow it to get me down (well most of the time).  There will come a time when chronic pain, like the common cold, will be defeated. 

      So until then, here's to the "I'm in pain and I don't care" club.

      Merry Christmas, Seasons Greetings, health and happiness in 2016 to my fellow in-pain people; mines a gin & tonic please, no ice xx

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