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[REVISION TKR] HELP - 16 months out and in pain<

Discussion in 'Knee Replacement Recovery Area' started by Scheherazade, Oct 8, 2015.

  1. KarriB

    KarriB FORUM ADVISOR Forum Advisor

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    You may need to see a revision specialist. They are trained to see problems with implants and are a fresh set of eyes.
     
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  2. Scheherazade

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    The revision specialists recommended are from the same group as my OS - do you think that is a problem? When I asked, my OS said he does revisions.
     
  3. KarriB

    KarriB FORUM ADVISOR Forum Advisor

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    I would see someone else. It's hard to recognize something that may have been your own mistake. I'm not saying your surgeon is bad or not giving you good care, but if they're still stumped as to what's causing a problem I would definitely see a different revision specialist.

    My best friend had a TKR two years before mine. An OS who was "the best around" was her surgeon. She was in great pain, had no ROM, a difficult time with stairs and the OS recommended an MUA at about 2 months. A year later she was still in pain, limping and swollen. When she went back he said there was nothing wrong with her TKR and she'd have to learn to deal with the pain. It happens sometimes. But she went to a different group with a different revision specialist who discovered the post used in her leg was too big for her bone and was loose. I'm not saying this is your case, but that a new set of eyes can sometimes see a problem when others can't.
     
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  4. Celle

    Celle FORUM ADVISOR Forum Advisor

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    I agree with Karri.

    I would look for a revision specialist who is not associated in any way with your current surgeon. The problem with seeing someone in the same group is that the specialist will be influenced by your first surgeon's opinion, no matter how he tries not to be. For example, if your current surgeon conveys by his attitude that he thinks you are making a fuss about nothing, a specialist in the same group may start off with the same impression of you. You don't want that.

    You need someone who will look at your knee with completely fresh eyes and will form his own opinions. While you may need to travel, it will be worth it, to get a completely independent second opinion.
     
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  5. Scheherazade

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    Thank you both so much. I will share what happens next.
     
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  6. Scheherazade

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    Testing of the fluids taken from my knees showed no infection, so that's great, but I never really thought that was the problem. The next step is for me to have a blood test taken and sent to Chicago to see if I am allergic to the components in my replacements. It makes sense to check for an allergy given that I am having a lot of pain and swelling in both knees, but I have a sense that isn't the problem.

    Could it be a lot of scar tissue? I do have the feeling that something is wrapped around my knee cap or in the inside front of my knee. Would that develop after things were going rather well, at the 9 - 10 month mark, and then start getting worse after that? But if it is scar tissue that is the problem, what can be done about it? I'm thrilled to think that I may have a problem that doesn't require surgery to fix and I can't believe scar tissue would be fixed with still more surgery, but...what else?

    I know folks have recommended I see a revision specialist and I absolutely intend to, but I wanted to get the two most serious, obvious things checked out first. Any revision specialist, I imagine, will ask whether I've been checked to make sure there are no infections or allergies.

    But in the meantime, I'm really curious to hear folks' response to the scar tissue question. I know Josephine posted on the tight feeling in the knees which she said was caused by scar tissue, but that was supposed to fade over time and instead mine has gotten much worse.

    Thanks, and sending strong healing wishes to everyone in the early stages of their recovery!!
     
  7. Scheherazade

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    So far I've been able to rule out misplacement or problem with the implants, infection and metal allergies. But the pain remains and I've regressed to where I was in terms of discomfort to where I was before the operation. I have to find a parking place near where I'm going or I just have to skip it, I am in awful pain going up and down stairs, a constant heavy pressure in my knees and esp. in the front of the knees. I do have baker cysts in one knee but not the other, so that isn't the problem.

    I just received the metal allergy test results today so I will see my original OS one more time and if he doesn't have any answers I will then go to a revision specialist. I just don't know what there is left to explain my dramatic decline. I did have an MRI done of both knees by my oncologist (just to move things along) and all she said was it looked like my tendons are really tight, but this isn't her area of expertise. :sad:
     
  8. KarriB

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    A revision specialist is the way to go if you have on going pain and discomfort. They are trained to see problems with replacements in a way other OSs are not.
     
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  9. newlybionic

    newlybionic FORUM ADVISOR Forum Advisor

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    My original OS kept telling me everything was fine with my knee. He did X-rays and sent me for additional testing and pretty much brushed me off. My ROM was decreasing and my pain was worse than before my surgery. I went to a revision specialist an hour away from my home. He took his own set of X-rays and then examined my knee. He could see the problem right away. It was even clear to me on the X-ray. I don't know why the original OS couldn't see the problem unless he didn't bother to look. In my case I needed to have my entire knee redone. While in my knee the new OS also found bits of cement floating around. I have done great since my revision. Not everyone needs to have it redone. It will be worth your time to find out what needs to be done.
     
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  10. Scheherazade

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    Bone scan scheduled for tomorrow morning - praying :beg: it reveals what is causing all the continuing pain and swelling more than a year and a half out from BTKR. One strange factor I don't think I've mentioned is that while every step is painful and the swelling is relentless, my ROM remains fine. :umm:
     
  11. Scheherazade

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    Nuclear med. bone scan ambiguous: "mild bilateral tracer uptake adjacent to the knee prostheses bilaterally." Going for (yet another) test, this one in NYC at the Hospital for Special Surgery. The test is an MRI MARS - which reduces or removes all the variations caused by the metal implants so that the MRI can be properly read. Hoping these new docs will have some answers for me. The OS thought maybe it was aseptic loosening, but the bone scan didn't confirm that. The NYC doctors will only do one knee Mars MRI/day so overnight stay in NY, but if I need revisions that's where I'll have them done, despite the distance. Any thoughts based on the bone scan results (and negative blood tests for infection and for allergies to the metal in the implants) from some of the experts here? Still swollen and painful, now 18 months out.
     
  12. newlybionic

    newlybionic FORUM ADVISOR Forum Advisor

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    The hospital in NYC is probably one of the best in the world. It may be the best place for you to get your answers. I know Philadelphia is a fairly long trip but you've got to go wherever you can to solve your problems. You are in my thoughts and prayers. :console2:
     
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  13. Celle

    Celle FORUM ADVISOR Forum Advisor

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    Let's ask @Josephine what she thinks.
     
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  14. Josephine

    Josephine FORUM ADMIN, NURSE DIRECTOR Administrator

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    Infections invariably give negative results even though the patient has had no antibiotics. And aseptic loosening (aseptic means no sepsis) is the most common course.
     
  15. Scheherazade

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    I know Josephine must be very busy but I don't understand her reply at all. If the tests for infections invariably yield negative results, then what is the point of having the tests? And what is the alternative for determining whether there is an infection? I also don't understand what "aseptic loosening is the most common course" means. Has anyone had anything like the results I had from the nuclear med bone scan? And/Or has anyone here had a MARS MRI?
     
  16. newlybionic

    newlybionic FORUM ADVISOR Forum Advisor

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    Aseptic means without infection. So aseptic loosening means the loosening is caused by something other than infection.
     
  17. Scheherazade

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    Thank you, NewlyBionic. I understand those are the two explanations for loosening, but I don't even know whether my replacements are loosening, given the ambiguous bone scan. Do you have any insight on that? Was your revision due to loosening? As you can probably tell, I am nearly frantic at this point.
     
  18. Wellness in Virginia

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    I had my BTKR in 2014. I am not as knowledgeable as many others on this Forum. I just write to say that I will pray for your healing, dear Scheherazade. Hugs!
     
  19. Scheherazade

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    Thank you so much, WiV!

    The results of the MARS MRI (which corrects for the distortions caused by the metal implants in regular MRIs) from the Hospital of Special Surgeries in NYC shows no loosening of any of the implant parts. It showed extensive shredding of the cartilage around my patellas which were not resurfaced during my BTKR, but the report stated that would not account for the pain I am still experiencing with just about every step I take.

    Next up seems to be replacing the plastic spacers, as nothing else accounts for my pain and swelling. Probably also resurfacing the patellas, just to see if that helps.
     
  20. Celle

    Celle FORUM ADVISOR Forum Advisor

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    I know that, before I had my first knee replacement, I had more pain from my kneecaps than from anywhere else. I had the kneecap resurfaced and that pain went away for ever.
    If the cartilage at the back of your kneecaps is shredded, it does need to be removed and replaced with a plastic button.
     
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