Knee Infection* 4 surgeries, 2 revisions, 1 staph epi infection

[KarriB]

You’re right, they left the hardware in. I am still taking 100mg of doxycycline and see my ID annually for blood work etc.

How much weight are you allowed to put on the spacer?

 

[poptarts]

I wish I had words of wisdom for your extremely difficult situation but all I can say is never give up, there is always hope. If you do not mind, I will pray for you.

“It always seems impossible until it’s done.” ―Nelson Mandela

 

[laralealu]

You’re right, they left the hardware in. I am still taking 100mg of doxycycline and see my ID annually for blood work etc.

How much weight are you allowed to put on the spacer?

Full weight bearing with the immobilizer. I was using a walker, but I’m transitioning to a cane. What do you think of that, too soon? Is it normal to remain on a maintenance dose of anti-b’s for so long?

 

[laralealu]

I wish I had words of wisdom for your extremely difficult situation but all I can say is never give up, there is always hope. If you do not mind, I will pray for you.

“It always seems impossible until it’s done.” ―Nelson Mandela

Thank you!

 

[KarriB]

My ID seems to think it’s ok. I went to 200mg after the IV and oral protocol, then at about a year she cut it to 100mg. I’m sure it’s not the ideal situation, but so far my labs come back normal on kidney and liver function.

If your OS is ok with transitioning to a cane with full weight and you’re comfortable with it go for it, but the moment there’s pain put the brakes on.

 

[laralealu]

Big news since Friday... I’m done with the immobilizer, hurray! And I started PT at home today. Knocking on wood, things are going well. I’m so grateful for all the support. But I’m nervous, and trying to take things slowly. My fall happened when I was a bit overconfident and stopped focusing. ROM at 100, wow.

 

[skigirl]

How frustrating to be dealing with this instead of moving on!! It sounds like you have a really great team---you are fortunate there!! I am glad that Karri is here to help you with this situation.

 

[sistersinhim]

100 bend after being in an immobilizer is fantastic!

 

[KarriB]

That’s great news! You’re absolutely right, take it slow and easy.

 

[PegGar16]

Hi @laralealu. I am also a staph epi and 2 stage revision person ...There is hope!!! I was just reading through your thread and hopefully add my experiences with what you are going through.

one resident blurted out that I might never achieve a good ROM again

I have great ROM and please don't think that you can't.

I went almost one year with 2 different spacers. The first one I was able to bend and put weight on. There was also the PICC line and Vanco. The PICC line actually makes it so much easier especially with all the blood draws that they have to do with monitoring everything. I found that I was a lot more mobil being able to tuck the Vanco ball in a pocket or even the bra with baggy shirt....I was not stuck in the house because of it.

I know what you mean about so many surgeries in such a short amount of time..it is good that they are trying to save the soft tissue I know it seems like a long time but it will be worth it to have everything go right.

Patience was the hardest thing for me to overcome.

P.S...I also had my mother in-house for quite a while. We were both ready for her to go home...LOL

 

[laralealu]

Hi Bone Smart Friends,

It has been awhile since my last post (and a couple more surgeries). In June 2020 I had the stage 2 surgery for post-infection and was optimistic that my knee issues were behind me. I was walking 1-2 miles a day, life was good. In January 2021 I was swinging my legs off the bed when I felt a “snapping sensation” on the inside of my knee.

I experienced really acute pain and my gait deteriorated over the course of a couple days. I saw my OS, xrays we’re fine so he ordered PT. That wasn’t very productive since I was in so much pain and guarded like crazy. I battled with insurance for a couple months and finally had a mri.

MRI summary…
Magnetic resonance imaging of the right knee demonstrates:
1. Status post right total knee arthroplasty revision with linear trace of fluid at the metal bone interface of the lateral femoral and medial tibial plateau components, likely postsurgically related.
2. Heterogeneity of the medial collateral ligament with attenuation of the proximal fibers and associated edema suggestive of acute to subacute strain.

My OS hasn't been very supportive. He recommended a brace. He doesn’t want to do any injections because of my infection history. i am overweight and he blames that for the issue. I can’t understand my loss of mobility And lack of improvement from the strain in 10 months. I can’t walk without a cane, and even then it’s very painful.

I had a CT scan today so we should find out if there are any prosthesis issues.

i’m researching options and looking for suggestions. I welcome any insights and recommendations. My mood is deteriorating and my world has become very small. I’m in the nyc area and have worked with the surgeons at HSS and Mount Sinai. I appreciate your help.

thank you, Lara

 

[Starsfan22]

Bless you laralealu! I've read your posts with interest as I am about to have stage two surgery, Monday. I hope they can find what is causing your current problems. With so much pain it seems crazy that they have no clue what is causing it. Good luck and keep posting, I'm looking forward to hear good news from you.

 

[Pumpkin]

@laralealu ,
Sorry to hear you are having continuing problems with your knee.

HSS has a committee that review difficult cases such as yours, has that committee gone over your challenging case? If not you may want to ask for a review.

For your medial collateral ligament strain, you can use ice and elevation to help with the inflammation.
Have you had a nuclear bone scan?

Good luck in your search for answers.

 

[PegGar16]

Hi @laralealu
How were the CT results?

 

[laralealu]

Hi @PegGar16,

Thank you for following up, the catscan really didn’t yield much info…

IMPRESSION: CT of the right knee demonstrates:

Status post right total knee arthroplasty. Hardware appears intact.
No periprosthetic fracture. (Yay, great news!)
Large suprapatellar effusion.

The suprapatellar swelling is pretty dramatic, it’s a pocket about 3-4” long, 2” wide, and 1” or so deep. I was talking to my PM&R doc on Friday about how this swelling could possibly be inhibiting my quad. I can flex to about 115 degrees but when I try to extend I can’t move past 35 degrees or so while seated. (my extension is 1-2 degrees while lying down.) So getting that pocket drained might be in order. the knee was aspirated this summer and the cultures came back negative for infection.

any thoughts or feelings about that idea?

again, thanks for checking in.

much appreciated, Lara

 

[laralealu]

@laralealu ,
Sorry to hear you are having continuing problems with your knee.

HSS has a committee that review difficult cases such as yours, has that committee gone over your challenging case? If not you may want to ask for a review.

For your medial collateral ligament strain, you can use ice and elevation to help with the inflammation.
Have you had a nuclear bone scan?

Good luck in your search for answers.
[/QUOT

Hi @Pumpkin,

Thanks you for your advice, I’m reaching out to HSS this week, I really seems like their joint team is well suited for my issues and they already have half my records!

and I will follow up on the nuclear bone scan, i wasn’t familiar with that test.

and I’m always icing, my machine rarely gets a break!

Thanks again, I really appreciate your help,
Lara

 

[Catalien45]

Hi, just doing some catchup, & saw your post. You have really been through it! I hope they are able to pin down the problem & find a solution.

I had my TKR Oct 6, & was doing well, even able to do short walks outside with my husband, & during my 5th week, my incision became infected. Long story short, I wound up going to emergency ( 14 hours, hospitals here are swamped!), & spending 6 days in the hospital.....tests, cultures, then recovery from surgery. My surgeon did a thorough cleanout & replaced my liner. This time it was general anasthesia - yuk! It really threw me for a loop, but I’m home about 2 1/2 weeks now, & improving just a little bit each day. I’m also on a PICC line for that 6 weeks of IV antibiotics, seeing ID Dr weekly, bloodwork weekly, then oral antibiotics. It all happened so Fast! But I don’t think I have totally lost all ground I had gained. I’m feeling better & stronger each day, which is encouraging.

I also find that I tire very easily, like you mentioned. I think it is the toll that multiple surgeries have on our bodies. One of the nurses reminded me of that, and, the fact that due to the infection, all the tissue was inflamed. And you have had more surgeries than I have. My heart goes out to you! I’m a very active person, it sounds like you are also. It’s hard to be so inactive, but this time around, I’m working hard on listening to my body & not overdo. I just don’t have the energy..... and, as one of the facilitators on this site pointed out, all the body’s energy is going into healing, not much left for much else. I know it will continue to improve, just taking longer than I like ( I notice I’m in a lot of good company on this forum ☺️). So I’m enjoying any little milestones....getting to walk with my husband, albeit short walks; looking forward to our grandson to spend a weekend,( but not ready for a while)... but he & his Mom helped Grandpa set up & decorate our tree. So I keep reminding myself, baby steps, slow & easy......

Btw, I just re-read some of your posts, & saw 100 ROM... wow! That sounds pretty darn good after all you have been through. And it sounds like you have a good team, that’s good. I will be pulling for you, along with a lot of other folks. I’ll be trying to check for your posts, & hoping to see some good news. Do take care....

 

[laralealu]

Hi @Catalien45,
thanks for your note. I’m happy to hear you are at home and recovering well. The iv antibiotics are tough, I was always so sleepy and dehydrated...so I hope you get lots of rest and drink lots of water. I’ll keep up the good fight, like you I look forward to the simple things like a walk with my husband and my dog, even grocery shopping!
take care, Lara

 

[Crowwood]

I am reading all this with interest and am grateful that you share it all. I am now three weeks into the first stage of the two part revision and finding the brace a necessary nuisance, particularly at night when i cannot seem to get it comfortable to sleep well. I am receiving a gram of teicoplanin intravenously every day which has reduced my CRP to 5 now but I find really it tiring and most afternoons I end up having a doze. I am trying to walk a little on my crutches every day as much as anything to get out of the house and that is ok but the spacer makes a lot of noise clunking and clicking as i move, which is a bit alarming but others on the forum reassure me is ok. Today it seems a very long way indeed to getting finished....its hard to stay positive

 

[Starsfan22]

I took brace off as soon as I was home from spacer replacement. OS said it was fine as long as I felt stable when walking with walker. So freeing! Time to finish will go quickly. Once off antibiotics you will feel better. Apparently being on a heavy dose of antiobiotics is hard on your body. The noise from the spacer gets better and as you realize it doesn't hurt or impinge on movement you'll ignore it. Read my post, it seems we're on the same journey. I'm six weeks out from the knee replacement and doing very well. This is hard but you'll get there. Ask me or others questions, we're here to answer if we can and support you always.