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Knee Infection* I have been told I have an infection

@KarriB the press and seal worked great! The shower was lovely! Today I woke up dizzy and stomach-crampy. I read that dizziness is a possible side effect of vancomycin, so I'll talk to home nurse tomorrow about it. I am eating yogurt daily and taking a probiotic, so not sure what more I can do for the stomach. I am not taking much pain medicine, and am having regular bowel movements. Maybe the stomach issues are not related to meds?
 
Used a TEN unit post operative. I found it useful in pain management.
 
I’m glad the Press n Seal worked! Are you taking iron? I was on it after both surgeries and once I went off noticed a huge difference.
 
I love my TENS unit. I use it mostly at bedtime, but if my leg starts aching during the day, I hook up to my TENS unit and disrupt those nerve pain signals. I find it to be very relaxing.
 
How are you doing?
Hey if you made it this long, then hang in there, are you in a SNF getting vancomycin?
I'll be looking for you, I been through this infection story, not a pretty one. Same Staph
Bug you have. So I know you must have challenges and some fear and stress,
You will be fine if your reading this. Shrink your world down to little things you can control
Because that's all you can now, it will be less stressful.
Don't do P T..have patience, your in a whole new game.
It will heal and very strong
 
@Steve4kids I am getting my infusion at home, twice a day. My hubby and I are getting pretty good at it. A nurse comes twice a week to do blood draws, and one of those times she also changes the PICC line dressing. I am startng to get some side effects from the Vancomycin, including dizziness, which no one wants to admit is from the medicine, even though dizziness is listed as a side effect. I am trying meclizine today to see if that helps.

Since I had the one stage revision, I am doing therapy, but I have a very good therapist, the best of the 5 (if you count the out-patient and the substitute therapists) I have had.

My biggest concern remains the question "Did my surgeon choose the right approach to do a one-stage revision?" The approach at this orthopedic office is to have the ID doctor assigned after surgery. I really wish that had been different, and that the OS and ID had consulted with each other and with me before surgery.

When I finally met the ID the day after surgery, she was not pleased with the choice of a 1 stage surgery, and she said she was unsure how the OS could be certain that he had eliminated all the bio-film.

While I am very relieved on one level that I don't have to face more surgery in 3 weeks, I am worried that this won't fix the problem long term. Thanks for your support and encouragement.
 
MathProf said:
My biggest concern remains the question "Did my surgeon choose the right approach to do a one-stage revision?" The approach at this orthopedic office is to have the ID doctor assigned after surgery. I really wish that had been different, and that the OS and ID had consulted with each other and with me before surgery. When I finally met the ID the day after surgery, she was not pleased with the choice of a 1 stage surgery, and she said she was unsure how the OS could be certain that he had eliminated all the bio-film.
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I agree that it would probably have been better if the ID doctor had been brought on board before your surgery. However, it's done now and at least you have her for continuing care and advice.

I'm going to ask @Josephine about the biofilm. My impression was that it tends to grow on the implant hardware itself. The problem then is to make sure that there is no lingering infection elsewhere.
 
Well that's great you are home and good that you have a knowledgeable PT.
They did something similar to me. I didn't understand because I was in a haze and went to several doctors.
They hope to get the infection controlled with the one stage revision, I rememberi I was very hopeful and was thinking it would work. It didn't so I had to do the complete revision. So it is a choice and some people have very good results. Not me. It's the patients call. I guess even understanding it better now I would have tried the stage one first. I kept trying to look and get answers from the Doctors but I realize that they do not know.
They have limited options. Maybe it will work out well for you. If it doesn't and you have to get a 2 stage well you tried you had a chance. Not the Dr. fault, they freak out because to a OS you are a very small percentage of their patients and something they have no control over. It is straight forward. In our case we got it and that's it. 3 choices ,
1. Try the first stage and hope it works
If not, do the 2nd stage and hope it works.
2. Go directly to 2nd stage
3. Do nothing and risk losing your leg or dying

You sound like you are doing very well and you are knowledge. I had to learn everything the hard way.
If you have a good helper it makes it so much easier. Fear and stress made everything so much harder for me.
That's why I pop up on this site to try and help someone with it.
My family convinced me to get a TKR. I wanted all the benifits of a new pain free knee. So they feel really bad it turned out like it did.
If the infection isn't controlled well you roll into the 2nd stage. No ones fault we are the special ones.
I really liked the OS I had. He did 8 knee operations on family members, fantastic record and a very good reputation. I remember the flashof horror crossed his face just for a quick moment then he gained control. In 20 years he never had this happen.
The bugs got control again. They will always be there. So I am prescribed antibiotics for life? Sometimes I forget to take them. Unti I read your post. I start thinking I feel a twitch in my knee, get scared and remember to take them.
He didn't do revisions. I researched and found the best. So if you have to get it you have to find the best revision specialist you can. I had mine done At USC. I knew it was different because when the wheeled me into the OR it seemed like a sealed large diving bell. Or a space capsule. Everyone in there had space suits on and a mist falling down to get airborne germs. So if you have to proceed further get the best.
Pain is my big issue, seems like you are doing well. I have had many surgeries in the last 25 years and a very high tolerance to opioids. Bad timing because doctors is scared to write it.
Now my knee is so strong and pain free. All I wanted to do is ride my bike. I am doing that now, sad that I could not stop and ran into a wall and tore my shoulder up, so I'm so far from where I was.
The concern you have about the surgeon well it makes no difference now. If it works he's a hero, if not he's a bad one. No recourse no one to blame except those little staph bugs.
I bet you could give really good advice to help someone, because, you sound so grounded.
Having all these surgeries I gained a new respect for life because I forgot how fleeting it could be.
You are doing so well. I look forward to hearing your successes




.
 
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MathProf said:
she said she was unsure how the OS could be certain that he had eliminated all the bio-film.
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What IS she talking about? Biofilm cannot be eliminated any more than can fungus from rocks in the garden! It's the bacterial contamination that needs to be neutralised by washing out with antiseptic washes such as Betadine and I would imagine that's what your surgeon did. Plus one has to be liberal and plentiful in the irrigation, continuing it for some 15-20 minutes or more.
 
@Josephine - the surgeon didn't do a washout. He removed the original TKR hardware and replaced it with a new set of hardware, all in the same operation. He is convinced he has removed the infection, but the ID doctor says that a 2-stage revision should have been done.
 
Yes, I read that - that's what a one-stage revision is. But he would have done a washout and debridement. That's mandatory.
 
Well as @Steve4kids says, if it doesn't work, then we go from there. Today's update is that last night I had a high-pitched buzzing in my head, which I told my nurse about this morning, so tomorrow I start on daptomycin and I have a refrigerator drawer full of vancomycin which I might try taking to an animal shelter. I called them today and they said the clinic side might be able to use it. I hate to put it in a landfill. Tomorrow is my follow up at OS with his PA. We'll see what is said.
 
If the animal shelter can't use the Vancomycin, take it back to the pharmacy. You won't get a refund, but pharmacists usually have a system for disposing of unwanted drugs.
 
Friday was my 3 week visit with the PA at the OS. Everything looks good. ROM is great, -3 to 115. Not much pain. I am managing with 2 vicodin at bedtime, 1 or 2 first thing in the morning, and tylenol during the day. I really think this has been the easiest rehab I have had - partly because I really do have a great therapist, and partly because I know what I am doing.

On the infection front, we meet the ARNP at the ID today, and she told us more than anyone had. First, she thinks that it is more than likely that I have had the infection since the original surgery or shortly thereafter (which fits with what we have always thought). Secondly the bone loss that resulted in the OS deciding to do a 1 stage surgery is due to the infection (the PA waffled on that on Friday). I will have the PICC line for 2 1/2 more weeks, and then will be moved to an oral antibiotic for at least 3 months, possibly longer, possibly MUCH longer, possibly forever.

My CRP, which in January was at 24.9 (normal is less than 8) this week is down to 3.6. Yeah!!! But ARNP confirmed what we had researched - this needs to be monitored for a long time before we can say is 'cured'. As I think about this it is like my breast cancer diagnosis 9 years ago. Essentially, we don't think it will come back, but it might. And it might come back soon or it might come back later. The longer you go without it coming back the more likely you are it won't. I can live with that. And if it comes back, we will somehow find the strength to deal with it.

Oh, and I have decided I am NOT doing outpatient PT. The PA didn't throw a fit when I said I was thinking about not doing it - he said 'well you know how to rehab a knee.' Yes, yes I do.
 
Everything from that 3-week visit sounds positive and hopeful. :yes!: :yay:
I'm glad for you.
 
One month post op and I walked around the block today! Things feel pretty good, I am only taking Vicodin at bedtime and tylenol the rest of the time. So far, so good.
 
Almost 6 week update - I have been dismissed from at-home physical therapy and no one is making me do out-patient! I really feel good and I think my knee feels better overall than it has in 4 years. The one little setback was that my CRP test from Monday went back up to 8.8 from 3.4 the week before. But today I saw the NP at the ID office and she wasn't worried because my knee looks and feels so good. She said the CRP could have gone up because I have become more active, thus working my new knee more, or my body was tired of the PICC line, or the daptomycin was causing some issues (even though I don't really have any muscle pain elsewhere). So the plan remains to take the PICC line out on Tuesday 7/17, and start oral doxycyline on Wednesday 7/18. Then I'll get another blood test the end of the month and see NP August 6. In the meantime, I plan to keep walking and once the PICC line wound has scabbed up, get into the pool (with my new sun-protecting swim shirt, a hat and SPF 50 sunscreen!) and do some water exercise!
 
That sounds like another positive follow-up visit. Great! :flwrysmile:

It would be wiser to wait until the PICC line scar is completely healed and the scab has gone before you get into a pool. Going in sooner, you could risk introducing infection. Play safe, and wait just a little longer.
 
@newlybionic and @KarriB , I have a couple of questions I wonder if you can answer. When you had your follow-up blood tests, were the doctors monitoring your CRP? And if so, did it fluctuate much? I am trying hard not to stress over changes, but, as my screen name indicates, I am a numbers person and a change from 3.4 to 8.8 is 158% increase! And yes 8.8 is only 0.8 (or 10%) too high, which is minimal. Yes, I think too much about this.
 
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