Infection a year after a TKR - Need advice and have questions

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Hi all.

I apologize for the length of this post but I am really upset - barely slept last night.  I am hoping that those of you who have gone through this (and those that haven't) can provide some insight and advice.

I have been in alot of pain (with swelling) since my TKR in May of last year and subsequent MUA in August.  Even pain management has not been 100 % effective. While I have always felt the implant moving in my knee for the last couple of months everytime I move it I feel/hear it "thudding" - the only way I can describe it. The pain has also increased and I also developed numbing in the lateral part of the knee and the toes on the outside of my foot.  In addition for the past week or so I have had burning in the joint area and sometimes over my entire knee.

Given the above I made an appointment with a new ortho surgeon because I was not especially happy with my original surgeon.  After examining my knee he felt that the implant was loose but ordered blood work (sed rate and C reactive protein) and a MARS MRI to rule out infection and for a better picture of the implant prior to scheduling revision surgery.  I was able to view my lab results online which indicated the below:

Sed rate 46 mm/h - high ( in range is <OR=30 mm/h

C-reactive protein 11.3 - high (in range is < 8.0 mg/L

So I called the dr. to make an appointment after June 1 for insurance reasons and asked if it was ok to wait this long given the out of range lab results.  I was told that he wanted to see me sooner rather than later.  So I went to see him on May 24th.

At the time of the visit he told me that I had an infection which would require the two stage surgery - the first to implant a cement spacer with antibiotics followed by at least 6 weeks of IV antibiotics via a picc line and the second for the actual revision.  He also told me that he would not aspirate at this time to determine the type of infection because he did not feel it prudent to do so and that this would be done at the time of the surgery at which point the type of infection would be identified and the proper antibiotic prescribed.  He also said that I must have a really good immune system as he was surprised that the infection has not caused sepsis.  I should mention that he had not yet received the results of the MARS MRI which I found really surprising given that I had had it a week and a half before my appointment and while he may not have had the CD of the images the hospital where I had it should have faxed the report. He did not seem too concerned that he did not have this report but did say he needed it prior to surgery.

He did not feel I should wait 6 months for the first surgery but also did not feel it urgent enough to get it done a.s.a.p.  When the surgical coordinator came in to schedule my first surgery I got the first available date of 7/6.  At that time she told me that if the doctor felt the infection was really serious he would have immediately sent me to the ER as he had done with other patients,

I was telling one of my friend about this and she got really angry telling me that the doctor was full of crap.  That while my labs were slightly elevated that this was not indicative of an infection and that if I really had one the results would be in the thousands.  She was basing this on what her lab results were regarding a thyroid condition that while elevated was told by her doctor that they would have had to have been in the hundreds to correlate to this particular condition.  She also said that there was no way my immune system had anything to do with me becoming septic and that there was no danger of that because she went through it with her husband who had a brain aneurysm and after his last surgery developed it and subsequently died when he went into septic shock.  She thought the doctor was using this as a scare tactic and that if he really felt that I had an infection he would not allow me to wait 6 weeks for surgery,  She then said that while she thinks I do have a problem with the implant that she does not think I have an infection or I would be really sick and that the only reason he wanted to do the two stage revision was to make money not caring about what I would have to go though.  Lastly, she said I need to get a second opinion.

I just think that she is projecting her experience with her husband onto my condition which is comparing apples to oranges as her husband's was extremely dire from the start.  I also think she has a general distrust for doctors which is further clouding her judgement,

I know none of us are doctors but I was hoping someone could answer my below questions based upon their experience:

If you have gone through this did your doctor aspirate your joint to confirm that you actually had an infection before scheduling surgery?

If not were you placed on any type of antibiotic before surgery to try to eradicate the infection prior to having the surgery to insert the spacer with antibiotics?.

Did you have the above labs and do you recall how high your results were and whether the results would have been extremely high if in fact an infection was present.

After the first surgery were you mobile with just a spacer in your knee - could you get around with a walker or crutches?

Were you in alot of pain afterwards?

Did you have a picc line for the antibiotics to be administered or did you have a regular IV?

Anything else I should know about the first surgery and then the actual revision surgery?

Laslty, do you think there is ANY validity in what my friend is saying and should I listen to her?

Thank you so much for any input on this,  I really appreciate it!

 

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11 Replies

  • Posted

    Welcome to infection land it sucks!! I maybe wrong its been 3 years since I had my infection although there is a chance I may still have one. The sed rate should be low mine was just checked and it was 2 if I remember correctly what you were shown is correct and I am not going to imply your friend is wrong but if your results are elevated I think when I was first checked when I had the infection my sed rate was in the 60's or 70's cannot remember the other. You do not want this to get worse and it can I have been there. Your lucky no fever or swelling and increased pain I would be very thankful they caught it early. My 4th TKR was July 27 2015 exactly 2 weeks went by and I came down with a slight fever on a Thursday Friday morning my fever was 99 by Monday I was pushing 103 pretty bad shape. If you want to wait go for it I would get it taken care of right away. Yes its a 2 part surgery what you were told is correct. The PICC line stinks and you get a nerf football size container of antibiotics that you administer to yourself 2X a day every day. The spacer is uncomfortable but you can manage walking around the house is okay ( very short walks as in inside ) anything longer you need crutches. Its a long process but well worth it to get rid of the infection. Your friend is right about something being in the thousands but it was not the 2 tests you had done. Its your knee and if you want to wait until things get bad that is your choice I have been thru it once and now its been over 2 years since my 5th TKR May 9 2016 and now based on the swelling the pain getting referred to a specialist who told me 30% of all knee infections are not detected by lab results is concerned I may have one so far the sed rate is great and I forgot the 2nd one now we are waiting to see if any cultures grow some do not appear for 2 weeks and he said even if it looks good there is still a chance for infection. You already are showing signs I would not wait it only gets worse. I have been there.

    Norman

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    • Posted

      Thank you so much for your input. I have read a couple of your discussion posts and know that you have had it tough to say the least . I feel badly for you

      I trust my Dr or did until yesterday when my friend read me the riot act. I know she's looking out for me. Based upon your reply I trust what my doctor said again. After all one who has been there knows far more than one who hasn't.

      I'm not going to wait. His first available is 7/6 when my surgery is scheduled for.

      Thanks again nwf477. I so appreciate the info you provided.

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  • Posted

    I was not trying to be mean or harsh but an infection is no joke. I have been thru it once and I keep my fingers crossed I do not have to go thru it again. Personally I feel if you wait its going to get worse and then its really no fun. The PICC line is horrible well not that bad but bad enough you really have to make sure the line stays clean with the swabs they give you if not and it gets dirty it can cause a clot another fun thing I went thru. I hope you have forearm crutches these are more comfortable then the older type that go under your arm pit. I was told walking in your home is okay ( you can put some weight on the spacer ) but for longer walks crutches. Not trying to scare you just want you to get the idea its not going to be much fun. When you have to add the antibiotic it takes roughly 2 hours for the fluid to be drawn inside and that is each time for 6 weeks. It really sucks having an infection and even though you have to have a spacer and a PICC line for 6 weeks its better to get rid of it now then let is get worse. If you ever have any questions once your surgery is done feel free to ask.
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    • Posted

      You were not being mean or harsh. You were being honest which is what I'm looking for.

      Three questions - did your Dr aspirate your knee prior to surgery to confirm you had an infection?

      And if not we're you put on any antibiotics prior to the surgery?

      We're you in alot of pain from the spacer?

      Thanks again, Norman. I so appreciate your help

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  • Posted

    There are different ways to check for infection mine was easy high fever major pain knee was hot to the touch and very discolored. Looking back my Dr. tried to avoid the spacer at first , when I went in on a Monday he knew I had an infection the next day I was back in the OR he tried cleaning out the infection. It did help but in the end I got the spacer anyway. If you want my opinion since he is going to operate anyway I do not think it matters once he takes the fluid out it will get sent out for results you already know you have an infection brewing. After the 1st surgery I had the PICC Line in for 2 months but I also think he may not have known exactly how to treat an infection properly since the Specialist I am currently seeing has told me what takes place if I have an infection and it goes right along with what your Dr. said. First implant comes out spacer put in and then the dreaded PICC Line wait 6 weeks then get the revision. At least you know both of our Dr.'s say the same thing no matter where we live. Even though this whole infection process stinks you are going to do great they caught it before it developed into what I had. The antibiotics will start after the spacer is put in, these are not the standard but high octane you will be monitored closely.While you have the spacer in its either one nurse or 2 that comes in and checks your blood and checks the PICC Line. It may take sometime but the rates will come down you will be overjoyed when they get rid of the PICC Line. I know your worried but what you wrote at first they already know you have an infection you shared the results by checking the fluid will confirm the results. As far as the Spacer it is uncomfortable and yes its just like when you had your TKR right after surgery of course but as time goes on it gets better. Not that this is a plus but you do not have to worry about therapy your not going to be doing much while you have the spacer I think there are a few things you can do but the spacer is not designed to act as your knee. You can think of the PICC line like an IV for me they went thru a vein in my arm between elbow and shoulder and pushed it till it came close to my heart it was in a major vein. Its aggravating at first but you get use to it. It just stinks waiting for the antibiotic to get in your body for me it averaged almost 2 hour each time once in the morning and once at night.Hope the answers help.

    Norman

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    • Posted

      Thanks again, Norman. All of your insight and telling me what transpired in your case had helped immensely. My mind is more at ease although I am really apprehensive about the whole process- which I guess is totally normal.
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  • Posted

    You have every right to be but at least I have given you forewarning I had to go by what the Dr. said there was no one to inform me what it was going to be like. One thing is for sure you will not be doing a lot and hopefully you will have someone to help on occasion. Like I mentioned before once you have the surgery and your dealing with it and you need to get angry complain vent etc. Feel free there will be times when you think life just sucks I know I did so if things are getting to you let me know I will try and help.

    Norman

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  • Posted

    I am so sorry you are going thru this.... you are in pain, scared and then you get bogus  advice from everyone!! On Feb3,2014 I had a left TKR.  1 1/2 weeks things went well. 8 was doing great. Then my knee got more and more painful....my ROM WAS STILL GOOD BUT THE PAIN WAS NUTS. I told my surgeon on every visit that I was afraid it was infected because of the pain, my knee was so HOT.......but no you sill woman it's not infected.  6 weeks in my ugly bumpy incision broke open and drained. No silly woman you are not infected.Long story short, I went thru PAIN HELL and finally I couldn't touch my foot to the ground....went to the ER, the ERdoc said " what is it about this that he thinks isn't infected" Did the labs you mentioned ( elevated but can't find results). My surgeon tapped it the next day I had pseudomonas ( I got it inthe OR at the time of surgery so I'd been infected 3 months) told the knee out a few days later, put in a spacer and a groin to ankle immobilizer on with no weight bearing on that foot. I was like that for three months with a PICC line and. An infectious disease specialist  with ever 3 hour antibiotics.

    I hope for you that it's not infected although it sounds like it is. I still have a numb leg knee down, neuropathy and ongoing pain.

    If he truly thinks that your knee is infected, July seems pretty long to wait. Ask HIM why that's OK, not the scheduler. Ask him if you will be in an immobilizer. ( he needs told me I woke up that way. Very easy to get depressed thru this....make sure your family knows the signs.

    I needed to get my right one done after my left one.....it's been 4 years and I haven't done it yet!!  And yep it hurts like crazy but so does the one I did do!!!

    Best wishes. Let me know.

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    • Posted

      Dang I hate typos!!  Not "8" was doing great, 8 was great for a week and a half.

      He treated my like a silly woman!!! And I will live my life with constant pain. I have learned to make the the best of it. Best wishes.

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    • Posted

      OMG Jeanne. So sorry you went through what you did. Unbelievable that your surgeon didn't think you had an infecion. What an idiot.

      I agree - I need to ask my surgeon why it's ok to wait til July.

      Hope you feel better and the pain subsides at least so that it's bearable for you.

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