TKR never ending pain

Posted , 9 users are following.

It has been two years since my surgery and I'm still in excruciating pain. I'm now with a pain doctor. I believe that my knee replacement was botched. I'm terrified to see another so called expert since the original didn't get the job done. Any advice would most welcome. I refuse to go back to the Dr that did my first surgery and don't know where to go from here. I've had several tests done and it shows alot of nerve problems along with severe hamstring damage. Any advice would be well received

I'm a 48 yr old female in the us. Texas. Thank u for at reading this.

P.S. I haven't been able to work or do much around the house. Anytime on my leg is unbearable.

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  • Posted

    You may want to contact a lawyer first and then maybe go to a medical university for a second opinion. Good luck, I am so sorry.
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    • Posted

      Thanks Mark, I have been thinking about going to a new specialist. I'm worried that my knee will get worse and at that point I could lose my leg. I had alot of dead bone in my femur because of my PVNS. Which is a tumor I had for seven years before they found it. Which led to my TKR.
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  • Posted

    Kristen

    I hear your pain, I have been two years in pain, and went to another doctor after first one pretty much blew me off and referred me to chronic pain management.  This one was sports injury doctor (excellent) who worked with another popular Orthosurgeron.  The second dr has done everything in his power to figure out the problem, as it was aligned correctly, but I kept getting big Bakers cysts and it filled with fluid and would push on nerve.  PAINFUL...... big time.   They were baffled that I would have the fluid, and identified it as synovial fluid because they kept aspirating the Bakers cysts, and eventually the front of the knee was getting fluid too. All signs said must be infection but blood work said no infection. After a year of him truly trying to do everything he could think of, while being very mindful of the nightmare and possiblity of infection everytime he stuck a needle in,  the orthosurgeon did a debridement/synovectomy where they go in arthroscopically with camera and tool and scrape all the scar tissue off bones and apparatus, and clean up any little fragments or cement, or other things that could be causing irritation in there. During this procedure, he diagonsed me with rare PVNS disorder.  His assistant gave me diagnosis at follow up visit, but didnt give me any plan of dealing with it, and didnt really even know what it is.  I feel your pain, I am actually 59, and my house is a testament to the pain I have been in cause nothing much gets done.  I just thank God my job does not require me to be on my feet.  I would definitely have someone test for that or go to an expert for follow-up, they may have to redo the TKR, hard saying.  I wish you luck though, it really sucks being in constant pain and not being mobile, able to do simple things you did before...  Nerve problems hurt, can they do a release?  I have heard there is something they can do to get the brain not to recognize the nerve pain, but I dont pretend to be a doctor.  Just wish you well .......

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  • Posted

    Wow. I am so sorry you are in so much pain Kristen.

    Would your family Doctor recommend someone more reputable than the surgeon that you had or is that the one they sent you to.

    I am lucky that I have some friends or friends of friends that have had this procedure done. I listened to the pros and cons of different Surgeons and was lucky enough to get a grip one. Good luck to you. It cannot be good to be going through so much pain. I hope you can find a Doctor that can give you some relief

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  • Posted

    I would ask for a second opinion from a different facility. US insurance companies generally are ameniable to the request. A simple xray will show If the prosthesis is straight and working properly. You can go from there. Having had something go wrong after the surgery isnt common but it sure happens. That's why a lot of revisions. I was never sure my original was done correct. My foot always flew open when I walked which had me in various levels of pain. I don't know where in TX you live but if you are close to a medical school like UT or Baylor contact them. They have a huge staff with every disciplinecat their finger tips and they don't mess around with getting to the bottom of the problem. I switched from a private practice and a local hospital to the University of KS medical center and Hospital and couldn't be happier.
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  • Posted

    Wow, I did not see that you also had PVNS.  From what I hear it is so rare alot of doctors dont know what they are dealing with. I did look online and found some specialists in the states.  That is the wierd thing is most people have a TKR like you, to fix the PVNS, but supposedly I didnt get it until after my TKR, unless first doctor missed it...... I keep getting contacted by lawyers who somehow know I got a replacement, urging me to join class action lawsuit, I hate frivolous lawsuits, and dont know if it is the doctor, the apparatus, or what, but if I end up having to have a revision, I would sure like to make someone else pay for it if it is their fault, I dont care about money, I just want my life back, and I am sure you are the same.  My daughter has a rare issue with a venous malformation in her foot that wraps around main artery, and causes pain.... she is in pain management for that and something was said to her about this nerve block you can get, I guess the problem is you can injure yourself and not know it with the blocked nerve, I dont know, I just know pain is not fun and I feel for people with chronic pain cause it not only hurts but the depression becomes overwhelming..... I truly urge yout to keep pushing for answers, I intend to do the same....

     

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  • Posted

    I also had a 'botched' left TKR done in 2012. I gave it one full year to heal and when I went back to the surgeon, he took xrays and basically just dismissed me saying 'get a second opinion'. That's how they roll, they will never own up to any errors or miscalculations of your components He just washed his hands of me. I did a lot of research and found a wonderful new surgeon for my right knee. Truthfully, any surgeon will not be too anxious to 'fix' any other surgeons botched knee. But my new surgeon did xray the botched knee and it definitely is out of alignment. It gives me more pain than the one I just had done in November. I will have to address the issue of increasing malalignment pain in the future. It will require a revision and being fresh out of surgery for my right knee, I'm not too anxious to go through a revision right now on my left.
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    • Posted

      jemma that exactly how it was for me they only want the sucess patients that come in and them how wonderfull they are can you imagine if a builder built you a house and it didnt come up to standard !!!! he would be sued !! and made to fix it or pay up , not surgeons oh no you sign that op form saying things can go wrong .and hes off the hook!!!! crazy dam gods the lot of them frown
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  • Posted

    Omg I have been so depressed due to lack of bend since sept 2014.  Two physios say so ething wrong and they cant help.  Surgeon says x rays arw fine so ge cant help.  Second surgeon said go back to guy who did it.  Suffering but dont know where next.

    carol Scotland

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    • Posted

      carol any surgeon who tells you go back to the first surgeon is not a very confident surgeon ,he did you a favour go find another and dont be pushed aside  i got that answer saying xray fine ! its only when they open it that most problems can be seen ,usually they wont consider doing it again till a year has passed due to bone healing 
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    • Posted

      I think that people are made to feel that it's their fault somehow that the knee didn't turn out well because that's the surgeon's way of evading responsibility and accountability. And you're right, he's doing a favor by advising to see another surgeon for a second opinion. After messing up your knee who would want to go through it all a second time with the same guy that did the bad surgery anyway?
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    • Posted

      yes no way would i let that guy go in again he broke my tibia it should never have happened . as i said before if i saw him at the top of a flight of stairs id find it hard not to push him down just to let him experience the pain .sounds awful but after 3 yrs of this its been life changing !! and no one accepts responsibility !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
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    • Posted

      THAT is when lawsuit is appropriate, so sorry you have had to deal with so much, no one understands how life changing it can be when you go in thinking you are going to have something "fixed" and come out worse than you went in, and basically crippled!!!!    The dr I went to has an awesome reputation, but it has become like factory work I think, he rushes through and most of the time is successful, but if something goes wrong, he appears to be lost and its "oh well, pain management for you"

       

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    • Posted

      Funny you mention that....my surgeons wife is a pain management specialist and their offices are just around the corner from one another in the same medical center. Pain management docs are generally anesthegiologists who have learned a faster way of making a buck. Most hospitals have found that you use the same person to go into surgery some days and in pain management others they don't burn out quite as fast and the income and overall profit is better. One of the well tenured guys at our local hospital was being used all over the place and was really beginning to feel the burn out. A few months ago he left and went to work for a veterans hospital where he feels he has a life again. Medical malpractice insurance on anesthesialology in general is so expensive in the US they have to practice where the facility pays the premiums. Then the facility owns them and they are victims of the system. Last time i talked to anyone in the med malpractice field they said ins premiums for the field were running around $7000 a month on average and were about the same for oby/gyn's. That's why a lot of small rural hospitals don't even deliver babies or do any complicated surgeries.
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    • Posted

      THAT IS SAD, I dont want to make it sound at ALL like I am pro lawsuits....I worked for a Judge for so many years and saw the BS lawsuits that came in, but when a doctor is totally negligent they should at least have to pay to have their screw up fixed (of course my stance on that adjusted once I was the one experiencing the pain and "disability" I guess.)  Like I said before, I dont care about suing for money, "pain and suffering" or any of that, I just want them to have to fix my knee..... I spent $4,000 OUT OF POCKET last year trying to fix it... and current ortho wont want to fix it cause it wasnt his work and original will never touch it because someone else has "messed with it" so I will likely go out of state if I have to have a revision.  I am still curious how first doctor didnt notice the PVNS either, unless somehow it occurred after surgery?  I have so many unanswered questions..... bottom line is I just want to be able to walk again, without pain....
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    • Posted

      I had cataract surgery Tuesday and they were pushing them through like crazy but it reminded me of an article I read a couple of years ago out of Russia about cataract surgery. The surgeon stands in one spot in the middle of the room and is encircled by roughly 12 gurneys in the form of a wagon wheel. Him and the equiment are stationary and the gurneys rotate on the platform. Sounds as sanitary as a bathroom in a garbage dump. Got to be some mistakes happen in that situation I'm sure but who is there to hear a complaint.

      Everyone told me I'd be out of it 22nd not even remember.....wrong.....the sedative wore off in the 1st few minutes and I remember the convesations and the ice pick in the eye the rest of the way. She stopped digging for a few a quick breather and I told them I needed a second helping of sedative but never got it. That's another reason I want to be out completely when they are screwing around with my leg. They always ask if I'm allergic to anything and my consistent answer is ," yes, pain".

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    • Posted

      Im with you there, I always wonder if I have a low tolerance for pain, because I dont seem to handle it as well as others....but who knows if they are dealing with the same thing (i.e. PVNS diagnosis).  Sure hope you get feeling better, and your wife......
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    • Posted

      Question, do you guys find your pain increases significantly with storms?  I used to think that was old wive's tale, but I cant believe how much worse I feel the pain when a storm is coming....
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    • Posted

      This is more than an old wive's tale, this is a medical fact. I live in the Northeast US and I had intense pain in both knees for three days before the snowstorm came. Once it actually got here, the pain subsided. The barometric pressure of a looming storm causes the fluids in your joints swell up and that puts increased pressure on nerves. Anyone with arthritis of the joints or has had a TKR is now a walking barometer. Put your money on them for an accurate weather report.
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    • Posted

      haha!! here here !!!! no pain during op and please please no pain after oh what a wonderfull dream that would be all we are is lambs to the slaughter .we have to laugh a little or we would go mad
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    • Posted

      yeah, some doctors seem to poo poo this idea and say there is no proof. I had gone without pain meds except for night to sleep for past week, and right before this storm, I hurt so bad, and other weak spots (herniated disks in neck) that dont bother me anymore, hurt as well....... crazy!!!
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    • Posted

      I want to find the 'perfect' surgeon for my next knee surgery. I have some requirements. He must be skilled of course. He must have a sterling reputation and recommendations. And last but certainly not least, he must have also been a patient at one time that has had HIS knee replaced and gone through what he's about to put me through.
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    • Posted

      Exactly, and sometimes, maybe the nurse.  When I recently asked to have my pain meds refilled as I am just needing them at night now, she told me I should be doing better by now, in a condescending manner, like maybe I was drug seeking or something... I replied, really? So you are familiar with PVNS?  She said "what's that?"  Exactly........
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    • Posted

      Absolutely.......100% positive you feel the pain. I usually get the pain 24 to 48 hrs ahead of the actual storm. I'm bothered more by the changing barometric pressure than the actual cold or rain. We've been on a barometric pressure roller coaster the last 2 weeks and I've been miserable with nerve pain in the lower part of the bad leg.
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    • Posted

      I have been told the tumor lies there spreading and not creating any problems until there is trauma. In my case the only concieveable trauma was hitting a bucket of balls at a driving range the night before. However; I visited with a pediatric ortho who had a patient as young as 9 who had a reoccuring case hitting multiple joints causing multiple surgeries. The surgery could have triggered the bleeding but unless the guy had ever seen the tumor before it could have been almost out of the way and almost dormant as well as he just wouldnt have known what it was and may have been hidden by the surgical bleeding and just blended in. My guess there was no reason for a biopsy so it remained undetected. Then after surgery it went crazy. My surgeon has found spots of on an in the bone each time heal operated. They all knew it was still there because there is a little piece in a nerve cluster that is obvious but can't be removed. No doubt, this is not fun and games we are dealing with.
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    • Posted

      You are so informative, it is so nice to talk to someone knowledgeable about this.  I am still anxious to see what this doctor says when I go back the 28th..... THANK YOU
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    • Posted

      Yes and in My next perfect life I am going to marry a gorgeous nymphomaniac who happens to be the daughter of an enormously wealthy industrialist and has given me a key to my own liquor store.......ain't gonna happen in real life
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    • Posted

      We used to have a wooden plaque in the downstairs playroom, (ok, the bar) it read:

      "I have found the perfect woman,

       I shall look no more,

       She'd deaf and dumb and oversexed,

       And owns a liquor store".

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    • Posted

      In my next life, I don't care anything about the liquor, money, or sex. All I want is a genius orthopaedic surgeon to spend my life with.
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    • Posted

      Hey there, re-reading your awesome posts, but I just had a thought, you say this is supposed to lie dormant until some incident or event brings it about?  Strange, because my daughter has had something in her foot, a venous malformation that supposedly lied dormant until she hit puberty, and has been so very painful, she has been to Swedish MEdical Center in Denver twice, SLC twice, and continues to receive chronic pain management treatment.  They go in and scrape stuff off, cause hers is wrapped around a main artery they cant get to it easily, I am wondering if it could be this instead, think I am reaching?????

       

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