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[KNEE INFECTION] Three surgeries to clean out infection

Maisybo

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I'm new here & thought I'd post about my dilemma in hopes of getting some advice or information.

I had right TKR August 2014. I have lymphedema in both legs but my ortho didn't think it would be a problem.

Each year since my TKR, my knee has gotten warm, red, painful & swollen, requiring surgery to clean out.. The 1st & 2nd times the surgeries were minor; not much pain, & doctor/ortho surgeon said "no evidence of infection in the hardware". I had to do Vancomycin & Zosin IV for 6 weeks after surgery & PT, & after 2nd surgery, infectious disease doctor had me take oral Bactrim 1600 mg daily for a year.

Yet, just as my year of oral antibiotics came to an end, in September of 2017 my knee was red & swollen yet again...I also have Crohn's Disease, & take Entocort orally for that.

My surgeon drew some of the pus-like fluid from my knee to culture it, & nothing grew on the culture. He said it was because I'd been on Bactrim for a year. So my ortho had to take me to surgery a 3rd time to debride my knee. This time he put antibiotic beads in there. When I woke up in recovery I was in agony. I was sure he had taken out the implant because of the amount of pain I had, but he hadn't. The anesthesiologist had to do a nerve block in recovery for me to have some relief because the morphine wasn't helping at all...it was horrible.

My ortho said there was no biofilm on the implant so it was not infected, so didn't need to be removed, but if my knee developed another abscess, he would have to go in & remove the implant, put in spacers for 6 weeks, & then do another TKR. I had 6 weeks of Vancomycin IV afterward & PT.(Medicare is my insurance at this point & wouldn't pay for Zosin, too; for the previous surgeries I had private insurance).

About 6 weeks ago after I did an hour on my compression pants lymphedema pump machine, I noticed yellowish fluid running down my leg. So I pressed a little on my knee, & a whole bunch of it started pouring out. It didn't look like pus, it's a watery consistency, & I'm taking 1600 mg of oral Bactrim daily again, per infectious disease doctor. It drained for about a day from a tiny opening at the bottom of the incision from my September surgery, & then started draining again yesterday.

I don't know how my ortho can tell if these abscesses are being caused by the lymphedema in my legs or by infected hardware?

I just had 16 decayed teeth extracted 2 weeks ago; my ortho & infectious disease doc said the decay could have caused the knee abscesses & to have the decayed teeth removed asap, & Dec 4 was as soon as I could afford it.

I DO NOT want to have this implant removed & another placed if this is from the lymphedema!! It will just keep happening if that's what's causing it, right? I'm emotionally drained from all this going on for 4 years, & it seems there may be no end...

I'm seeing an ortho who specializes in implant complications within the next few weeks for a 2nd opinion, but since my knee is draining again, wondering if I just need to go to my regular ortho... I know he will say implant has to come out...

Has anyone else gone through this or anything similar?

I feel like I'm going to have a breakdown over all this! I'm disabled & live alone & have some support from my sister, but not much.

I would really appreciate any advice or comments you can offer; I appreciate your input & I know this was a long post; sorry.
 

SusieShoes

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Hi @Maisybo, and :welome: to BoneSmart. We glad you found us and will do our best to help and support you. You’ve been through quite a lot. I’m going to tag @KarriB, who has dealt with infection in her knee, and also our Nurse Director, @Josephine. She has a great deal of experience in orthopedics and can advise you.

Here are the guidelines we give to all new members. The links are to short articles that explain the BoneSmart approach to gentle recovery. Also take a look at our Library, which has collected even more information on all aspects of knee replacement.

And of course share with us, vent if you want to, or ask questions. We’re here to help.

Knee Recovery: The Guidelines

1. Don’t worry: Your body will heal all by itself. Relax, let it, don't try and hurry it, don’t worry about any symptoms now, they are almost certainly temporary
2. Control discomfort:
rest
elevate
ice
take your pain meds by prescription schedule (not when pain starts!)
don't overwork.
3. Do what you want to do BUT
a. If it hurts, don't do it and don't allow anyone - especially a physical therapist - to do it to you
b. If your leg swells more or gets stiffer in the 24 hours after doing it, don't do it again.​
4. PT or exercise can be useful BUT take note of these
5. At week 4 and after you should follow this

The Recovery articles:
The importance of managing pain after a TKR and the pain chart
Swollen and stiff knee: what causes it?

Energy drain for TKRs

Elevation is the key

Ice to control pain and swelling

Heel slides and how to do them properly

Chart representation of TKR recovery

Healing: how long does it take?

Post op blues is a reality - be prepared for it
Sleep deprivation is pretty much inevitable - but what causes it?

There are also some cautionary articles here
Myth busting: no pain, no gain
Myth busting: the "window of opportunity" in TKR
Myth busting: on getting addicted to pain meds


We try to keep the forum a positive and safe place for our members to talk about their questions or concerns and to report successes with their joint replacement surgery. While members may create as many threads as they like in a majority of BoneSmart's forums, we ask that each member have only one recovery thread. This policy makes it easier to go back and review history before providing advice.
 

Josephine

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Maisybo, what a sorry tale you have! Would you tell me the dates of all your surgeries so I can put them in your signature? I use that information a lot when responding to members. Thank you
My surgeon drew some of the pus-like fluid from my knee to culture it, & nothing grew on the culture.
That's not at all uncommon. It doesn't mean you don't have any organisms in there, just that the abx have masked them.
This time he put antibiotic beads in there.
Jolly good move!
My ortho said there was no biofilm on the implant so it was not infected
Sorry to dispute with your surgeon but this happens to be something I know quite a lot about. Biofilm is microscopic so can never be seen with the naked eye!
I noticed yellowish fluid running down my leg. So I pressed a little on my knee, & a whole bunch of it started pouring out. It didn't look like pus, it's a watery consistency, & I'm taking 1600 mg of oral Bactrim daily again
The Bactrim is co-incidental. It's pus and it's infected okay.
I don't know how my ortho can tell if these abscesses are being caused by the lymphedema in my legs or by infected hardware?
Only by experience which he appears to be lacking in. I think you need to go to a joint replacement infection specialist.
I just had 16 decayed teeth extracted 2 weeks ago; my ortho & infectious disease doc said the decay could have caused the knee abscesses
Absolutely not! Research has shown that the bugs in peri-prosthetic infection and dental infections are not the same. The surgeon I know who has made a very detailed study of this, including developing a DNA sequencer that is able to differentiate between bugs that might be of the same generic family (staph aureous, strep, etc.) can in fact have totally different genetic identities.
I DO NOT want to have this implant removed
I;m sad to have to tell you this, Maisy, but I don't think you have a choice. You need to have a two staged revision which is 1. take out the implants and insert temporary bone cement spacers impregnated with gentamicin and 2. about 3-6 months later, when the blood tests have all settled to normal, have a new knee inserted. I know this sounds horrific but it needs to be done if you're to get any chance of being without infection.

Do ask questions if you want to. I'm always here.
 
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Maisybo

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Josephine,
The Infectious Disease doc also said biofilm can't be seen with the naked eye & that my ortho doc should've removed the implant this time; the 3rd go-round.
My fear is that even with a new replacement, these episodes of infection will continue because of the lymphedema...I'm having my records reviewed by an ortho who is a specialist in joint replacement complications; I'm waiting to hear from him to tell me if he'll accept me as a patient.
I have so many health issues with the Crohn's, & all these infections on top of that has been too much for me.
I know I don't have a choice if I have to have the implant replaced...my left knee is bone on bone & needs to be replaced too, but the right knee has been such a nightmare I can't even think about it now.
I will try to get the dates for the surgeries to you -- just the knee surgeries, I'm assuming?
Thank you for your reply.
 

KarriB

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Oh, Maisybo, you’ve been through a nightmare! I had pus running down my leg (like a large stream) about a month after TKR. My friend drove me to the ortho office, but it was Thanksgiving Eve and only the back/spine doc was in the office. However, he took one look at the seeping and closed incision before sending me to the hospital. I had emergency surgery that night with a revision specialist who did a washout/spacer exchange. I was put on an IV antibiotic until the culture grew. At first, until the cultures grew, I had a whole team of infectious disease drs. It took 4-5 days for all the cultures to grow. Once the infection was identified a PICC line was placed in my arm and I began IV antibiotics as well as oral Rifampin for 6 weeks(I’m allergic to penicillin).

Right after surgery the specialist told me he didn’t want me bending my knee for two weeks because the soft tissue was so compromised by the infection and the subsequent surgery. So I was put in an immobilizer for two weeks. When the staples were removed the seeping began again, so the immbolizer stayed on for a total of 4 weeks, that’s how long it took for the seeping to stop completely. The antibiotics took a toll on my body because I stopped producing white cells for a while and had to go off all antibiotics for two weeks until white cell production started again and I was put on 200mg of doxycycline. Now 4 years later I still take a maintenance antibiotic 100mg doxycycline a day and see my ID annually. It’s not ideal, but my labs come back good so we just continue on. As Jo said, I’m not sure how you’ll get out of the spacer going in because this has been an ongoing problem for you and probably the best way to get rid of the infection for good.

Jo mentioned the antibiotics/Bactrim may have masked the infection. Although this didn’t happen to me, I do know someone that this happened with, just coincidentally with Bactrim.
 

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steverup

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Right after surgery the specialist told me he didn’t want me bending my knee for two weeks because the soft tissue was so compromised by the infection and the subsequent surgery. So I was put in an immobilizer for two weeks. When the staples were removed the seeping began again, so the immbolizer stayed on for a total of 4 weeks,.
How did being in the immobilizer for 4 weeks after surgery affect your new knee recovery? I ask because I’m in one now after 7 weeks post-op and will need to stay in it for several more weeks.


Sent from my iPhone using Tapatalk
 

PegGar16

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Hi @Maisybo! I tried to do the conservative route and ended up having it removed 3 months later. Once you stop taking the antibiotics it doesn't take long to show up if it is still infected. I know nothing about lymphedema but the drainage would have me at the Doctor's office or ER.
 
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Maisybo

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Thanks to everyone for your replies. My real name is Dana; when I signed up on the site it said not to use my real name...

I didn't list all my issues besides my TKR.

Crohn's
Degenerative Disc Disease
Lymphedema in legs (caused by severed lymph nodes during bowel resection for Crohn's)
Partial traumatic amputation of left foot at age 4; missing 1st, 2nd & 3rd toes & 1/2 my foot; causes serious balance issues
Severe osteoarthritis in remaining foot & left knee & right foot & ankle
Chronic pain from all of the above
Sleep apnea

One reason I'm so terrified to have a revision is because my pain was not adequately controlled post operatively with my original TKR, even though I told all doctors, etc that I'm on a chronic pain regimen beforehand, they didn't keep me on my regular pain medication schedule afterwards because my ortho wouldn't write an rx for my meds. He said the strongest medication he writes rx for is Norco, & I take Oxycodone & at that time, Opana ER.

I know there will be pain, but I was wailing & crying for 3 days; my pain level was a 10 & never went any lower; they finally had an anesthesiologist come & give me something that's usually only given in the OR & I got a little relief.

A day after my TKR my blood glucose went up to 297 & the nurse had to give me a shot of insulin & I'm not diabetic; they said it happens after surgery sometimes. I'm scared of a repeat of this.

They promised me the Pain Management Team would be monitoring my condition post-op but I never saw anyone from that Team.

I have gone to the ER here in my small town in the past when I had these abscesses & since I didn't have my TKR there, none of the orthos will do any kind of surgery on me.

My ortho doc is in Houston, 150 miles from where I live now; I used to live in Houston but don't now.

I don't really want to go to my original ortho now because I feel I need to see the revision specialist who's reviewing my records. He's 75 miles away from where I live.

I don't know if I need to go to the ER in my town now with this current drainage. They're probably not going to do anything; will probably just send me to my original ortho or wait until Monday & call the revision ortho doc & see if he will see me immediately (I've never seen him) because I'm infected again or just call my original ortho now & see what he recommends I do?

I know any advice isn't from doctors on here, but I would appreciate your thoughts, advice, comments, etc.

I feel very scared & don't know what to do.
My knee is aching slightly, & still draining.

Thanks to all,
Dana in East TX :sos::sos:
 

Steve4kids

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Hi Dana, I’m sorry your having such a rough time. Dealing with pain and pain management is so very frustrating. It is very hard to get proper pain management now because the Drs are under so much pressure to write less potent medications than they used to. If you have been under PM before it is even harder because you probably have a very high tolerance.

I was in the same dilemma your having and I tried to make arrangements with pain Dr and told my surgeons, every doctor I had contact with, that I needed to have proper pain medications. Well they didn’t care. So I would advise you to find a doctor that will give you proper medications for your situation. Do it diligently, don’t stop trying to find a good Pain doctor. Do that first, because once your in recovery it will be harder.

Yes it’s a hard road what you are going through. The hardware out, the spacers, debridements, hardware back no doubt about it. Your poor knee has been chopped , hacked, bruised , just beat up.

But. You are not alone and you will get through this. You will. Your body is amazing. Those bugs have to be killed. I have been through what you are now and just reading your post brought back memories, of hopelessness, fear, and pain. I never thought I would smile or feel the sunshine again. I did . I feel so much better now. You will too.
It seems so far away and my words might seem not helping you feel better right now. This will pass.

My advice to you.
Get second opinions, get three, get four. Check and find the best doctor that’s experienced in TKR revision, find one that does that only, cleaning up things the other OS’s can’t do.
Revision specialist, find the best and make a appointment ASAP
Find a pain doctor that will give you what you need, talk to other people, check the internet.
It’s important that you have some choices and options.
Demand pain control, it’s your right. But you have to push for it nowadays. Search now before you're down.
Also take meds as prescribed, so it’s important to get the proper amount. You don’t want to take more than you're supposed to because you will run out.
Build more tolerance then you really will hurt more.
You will get through this, others have had it much worse. You got to think like that and be grateful those bugs haven’t killed you.
Keep writing on this site, you won’t feel alone. Lots of good people here and the feedback will really help and you can help others too.
 
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Maisybo

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Dates:

TKR right knee - 08/18/14
Type of knee - Conformis
Surgery to clean out 1st abscess - 09/15; IV Vancomycin & Zosin for 6 weeks
Surgery to clean out 2nd abscess 08/16; IV Vancomycin & Zosin for 6 weeks; 1 year oral Bactrim 1800 mg daily
Surgery to clean out 3rd abscess; antibiotic beads placed during surgery - 09/15/17; IV Vancomycin for 6 weeks; 1 year oral Bactrim 1800 mg daily prescribed

Maisybo/Dana
 
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Maisybo

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Steve4kids,
You're right; my pain meds tolerance is very high; the doctors never want to give me more than whatever the "standard" dose is.
I have a pain management doctor, but she isn't on staff at any of the hospitals I've been in, so my surgeon & the hospital wouldn't let her treat me for pain at the hospital.
She has already halved my dosage because of some DEA ruling in 2016.
We had finally figured out a dosage that really helped me; I was able to sleep for at least 4-5 hours a night, but since she halved my dose, I barely sleep; I'm awake for 24-48 hours at a time regularly, but my doctor says her hands are tied about my dosage amount.
Thank you for your encouraging words; I feel so scared & alone & need all the support I can get.

Dana
 

Steve4kids

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You will get thru this.
It is scary and yeah feeling alone is so much apart of this. The good feelings will come back and you will gain from this and appreciate life more. Just know this will pass.
 

Celle

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One reason I'm so terrified to have a revision is because my pain was not adequately controlled post operatively with my original TKR, even though I told all doctors, etc that I'm on a chronic pain regimen beforehand, they didn't keep me on my regular pain medication schedule afterwards because my ortho wouldn't write an rx for my meds. He said the strongest medication he writes rx for is Norco, & I take Oxycodone & at that time, Opana ER.
Josephine has said it and I'm going to second what she said - the only way to cure your knee of infection is to have the infected hardware removed, then go through a period where you have an antibiotic-impregnated spacer in your knee, together with a course of intravenous antibiotics. When the infection is clear, you will have new hardware inserted.

You have to do this. You can't keep on having recurrent infections.

I know you're concerned about pain relief, but a different team of specialists will be able to control your pain better.
I don't know if I need to go to the ER in my town now with this current drainage. They're probably not going to do anything; will probably just send me to my original ortho or wait until Monday & call the revision ortho doc & see if he will see me immediately (I've never seen him) because I'm infected again or just call my original ortho now & see what he recommends I do?
You should certainly do something. I suggest going to the ER and asking for a referral to the revision specialist. You need a surgeon who specializes in problem knees and who has experience with infected knees.
You should also have an Infectious Disease doctor on board.

TKR right knee - 08/18/14
Type of knee - Conformis
Surgery to clean out 1st abscess - 09/15; IV Vancomycin & Zosin for 6 weeks
Surgery to clean out 2nd abscess 08/16; IV Vancomycin & Zosin for 6 weeks; 1 year oral Bactrim 1800 mg daily
Surgery to clean out 3rd abscess; antibiotic beads placed during surgery - 09/15/17; IV Vancomycin for 6 weeks; 1 year oral Bactrim 1800 mg daily prescribed
Thank you for these dates, but a couple of them are confusing. I'm not sure if "09/15" is September 2015 or if you mean September 15th. Similarly, "08/16 " is also confusing.

I think you mean September 2015 and August 2016, but I'd like to be sure, before putting them in a signature for you.
If you could clarify those dagtes for me, I'll go ahead and make your signature. Thank you. :flwrysmile:
 

KarriB

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Getting another revision specialist on board is the way to go and be brutally honest with him or her about ALL your concerns. Make some calls on Monday and some on line research today if possible to find a few docs. You can try our Find a Clinic tap at the top.
 
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Maisybo

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Celle,
Yes, the dates are September 2015 & August 2016; I can't remember the exact days.
Thank you,
Dana
 

Jamie

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Maisybo....I see that you are in a rather small town. I strongly you to contact this doctor in Dallas. He specializes in difficult cases like yours and is known both in the US and the UK for his knowledge of biofilm infections. He's the person Jo was referring to in her post. He's the best in the country for your situation and he's not that far away from you. Please give his office a call Monday morning and let us know what happens. You need to see him.

Dr. Gerhard Maale, Plano, Texas (Dallas/Fort Worth area)
 

pdx

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Dana, so sorry you are going through all this. One suggestion: Could your pain MD write a "consult note" to the orthopedics people (including the revision specialist) about the regimen you are one, confirming dosages, etc? This sounds like it will need some sorting out!
In the meantime, I hope you can jump on the infection issue as quickly as possible.
 
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Maisybo

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Jamie,
I went to Dr Maale's website & it appears he doesn't accept Medicare; it's not included in the list of insurance providers on his website.
Medicare is my sole insurance coverage.
He sounds like a great doctor & I wish I could see him.
Thank you for your suggestion.
Dana
 

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