Knee Infection* My dilemma.
- Thread starter Chrissyann
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Chrissyann
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Im sorry to say it was not a good result. My surgeon has referred me to the specialist infection team and says he’s not part of my care plan now. The infection team meet once a month, it seems the doctors striking is causing delays, a couldn’t care less approach in my book. So I’m back in the same boat. Apparently my infection is a low grade one, I’ve had it for 13 months and it doesn’t seem to have done much harm, that’s what I was told. When he did the arthroscopy he said that the bone looked fine and the damage is minimal in a low grade rumbling infection. I raised the antibiotic option he said it might make the swelling go down but wouldn’t help the pain relief. He mentioned the association of teeth and infection. I do have two root canals, I’m not sure if they are responsible, there is no one to ask. The dentists are not even aware the two are related. I have asked pals to call the infection team to see they’ve heard of me, if I’m even on a list. It’s what I expected really, a shambles.
Thank you all for caring, it means a lot to me.
Thank you all for caring, it means a lot to me.
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I really think it is time for a formal complaint to the Chief Executive of the Trust. You are suffering and this has not been dealt with over a long period.
My understanding from what I have read on BoneSmart about infected joints is that you need the Orthopaedic and Infection teams working together to sort out antibiotic treatment and then query surgical treatment.
I would be demanding proper treatment and possibly a second opinion.
My understanding from what I have read on BoneSmart about infected joints is that you need the Orthopaedic and Infection teams working together to sort out antibiotic treatment and then query surgical treatment.
I would be demanding proper treatment and possibly a second opinion.
I agree with EalingGran. Don’t give up!!! Please continue to fight for the care you deserve. Make a formal complaint. You might also try looking at seeing someone in a different city. No matter what, we’re here to lean on, even though we cannot do anything directly. We care about you!
LaJudes
junior member
Oh my goodness, l just read your whole story. Haven't checked this forum for a while. I too had a similar experience, being treated on and off with antibiotics, had a wound clean out, numerous aspirations etc, went on for over a year. Pain stiffness, swelling and a hot knee with low grade temp. They finally did an MRI, showed extensive infection with a sinus tract. l was sent the same day to a specialist who admitted me to his hospital that same day, and removed the knee replacement the next day! I was there for 8 days, sent home with a pic line and IV meds for 6 weeks. Then I month later had the new knee replacement put in by this same specialist hospital 4 days that time. l have been fine since though it was a long haul. You have my sincere sympathy for what you are going through. I am very concerned about the big delays for you. Please look into my story on this site.
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Hi Chrissyann,
Stopping by to send a hug
and see how you're doing and whether you've had any updates on appointment dates etc? This has to be so maddening. Please know we're here for support always.
@Chrissyann
Stopping by to send a hug
and see how you're doing and whether you've had any updates on appointment dates etc? This has to be so maddening. Please know we're here for support always.@Chrissyann
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Chrissyann
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Hello Layla, I had an appointment yesterday. I met the team from the bone and infection team, 8 of them in total. I don’t know what to say, it didn’t go as I expected it. I’m speechless! It appears that I’m well and the infection is low grade and it might be worth doing nothing for the time being. So I’m left with confusion as to what to do. I’m meeting with the consultant sometime in the future. My blood tests were elevated as expected. That’s it, of course I’m upset, I have to carry on and suffer.
thank you so much for caring.
thank you so much for caring.
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Thanks for your response, Chrissyann. I am so sorry for the confusion and uncertainty you're feeling after yesterdays appointment. Meeting with eight medical professionals without any clear directive or plan other than "wait" has to be very frustrating. I am going to take this behind the scenes here and see if there's anything else we can offer for advice, so please check back. I'd like to encourage you to stop by anytime, we're always here to listen and support in any way we're able. Big hugs, Chrissyann.
@Chrissyann
@Chrissyann
@Chrissyann ….please go back up and read the post from @EalingGran recommending that you file a formal complaint. She is in the UK and can give you some guidance in getting that done. Don’t quit fighting for the care you deserve. Also, try and get your GP to assist you in any way possible. You DO deserve to have an active infection treated so that it doesn’t become a bigger problem.
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You have a right to a second opinion under the NHS.
I would also be pursuing the formal complaint route if I was in chronic pain and being told that nothing could be done for a proven infection.
Sometimes doing nothing is the best treatment- but I would want to be convinced that this was a considered decision and my own feelings and symptoms were being fully taken into account.
I would also be pursuing the formal complaint route if I was in chronic pain and being told that nothing could be done for a proven infection.
Sometimes doing nothing is the best treatment- but I would want to be convinced that this was a considered decision and my own feelings and symptoms were being fully taken into account.
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Chrissyann
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Thank you all, it’s appreciated. It was a strange discussion, I was asked if I had understood that amputation is a complication of revision surgery. Obviously I’d read that. The infection team were suggesting that infections are almost impossible to eliminate. I didn’t expect that kind of reception. I’m seeing my surgeon again, one day? I’m a bit worried about my blood tests, it was quite elevated, due to infection. Oh dear, I will look into kind words, Earling gran. Thank you.
That is a most alarming discussion for them to have with you. On the one hand they are saying "wait and see" and on the other they mention amputation? With no real treatment plan in between? This just doesn't make sense to me.
Please don't make any rash decisions about something as serious as amputation until you have thoroughly exhausted all treatment options. Insist that the team tells you the "why" behind anything they recommend or even talk about. We have LOTS of revisions done for BoneSmarties and in the more than 15 years I've been working with joint replacement patients, I've seen only a few people with amputations. And they were all done BEFORE they found BoneSmart and learned to work for other options.
People do recover from infections. Even when the bacteria is persistent, there are treatments that allow you to live with it by taking antibiotics on an extended basis and being watchful.
It almost sounds like they are trying to scare you away from having a revision.
Please don't make any rash decisions about something as serious as amputation until you have thoroughly exhausted all treatment options. Insist that the team tells you the "why" behind anything they recommend or even talk about. We have LOTS of revisions done for BoneSmarties and in the more than 15 years I've been working with joint replacement patients, I've seen only a few people with amputations. And they were all done BEFORE they found BoneSmart and learned to work for other options.
People do recover from infections. Even when the bacteria is persistent, there are treatments that allow you to live with it by taking antibiotics on an extended basis and being watchful.
It almost sounds like they are trying to scare you away from having a revision.
