Knee Infection* Limb Salvage Surgery Recovery

daddydaygo

new member
Joined
Sep 17, 2023
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18
Age
25
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United States United States
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Hey all,

I stumbled across this forum as I was doing research, and thought this would be a fantastic opportunity to document my recovery. Little background: I’m 25 years ago and was diagnosed with Osteosarcoma (bone cancer in my knee), which resulted in 6 months of intense chemotherapy and a surgery known as limb salvage surgery. It’s essentially a total knee/partial femur replacement. The fundamentals of recovery are very similar to TKA.

My first LSS was January of this year. Recovery was tough as I was going through chemo as well. Pain was really bad which resulted in me being on opioid’s basically around the clock. The first couple weeks, my PT stressed getting my range of motion. I ultimately ended around 120 degrees. It took several weeks to get my quad activation back . I was only 50% weight bearing for 6 weeks to allow the bone to adhere to the implant
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In April, as I progressed with my weight bearing, I noticed pain mid thigh and eventually it became swollen. It started to squeak every step I took. This was just around my 6 week checkup with my OS, and scans ultimately showed the implant had failed.
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The following week I had my first revision to fix the broken hardware. Due to the design of the prothesis, they removed more femur to put in a new “stem” (see pics). Antibiotic beads were placed during this surgery. Pain was definitely better this time around compared to the first. As I was still going through chemotherapy, I was put non-weight bearing for 12 weeks to allow my bone to heal around it. The first couple weeks we focused heavily on ROM, which I ended up peaking at around 115 degrees. After that I did PT 3x a week, working to strengthen all of my leg muscles to prepare to start walking.
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When the 12 weeks passed, scans showed nice bone growth, so I got the go ahead to start progressively weight bearing! After a couple weeks of using crutches/ a walker, I upgraded to a cane. My gait was excellent given I haven’t walked in 6ish months. At PT we continued to work on my gait and strengthen everything.
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Now fast forward to August. I ended up slipping at the pool and immediately knew something was wrong. My leg looked like it was put on sideways. I went to the ER and X-rays looked good (somehow, you’ll see why in a bit). So I tried to enjoy my vacation on crutches not putting any weight on it. When I got home, my OS ordered a CT. Unfortunately, my CT showed a suspected infection and broken hardware. I’ve had a lot of residual chemotherapy symptoms, so maybe the infection symptoms snuck through because everything seemed normal. My OS explained his plan, which involved a 2 step revision and some heavy hitter IV antibiotics.

The following week I had surgery to remove the hardware, take cultures, and put in the static antibiotic spacer (Vancomycin and something else). Cultures came back as Staph ep. Infectious disease put me on 6g of Cefazolin a day. I’ve been on them for around 3 weeks now with no noticeable side effects. In 3 weeks, assuming my bloods reflect the infection is gone, I’ll be having stage 2 of my revision! During the surgery, I’ll likely also be getting a quadplasty as my OS anticipates lots of stiffness/scar tissue. I’ll be updating if anything significant happens between now and then.

I will be documenting this next surgery recovery thoroughly! I have soooo many pictures through my journey, but bombing this post with them seems like a mess so if you’re curious about anything specific feel free to comment!
 
Wow, you've really been through the mill with this! And given chemo's effects on WBCs it's not surprising you'd end up with an infection (sighing and shaking my head in rueful sympathy).
I hope this next surgery is the last one you need so you can fully focus on healing, rehabbing, and getting on with what you want to do.
Thank you for being here with us.
 
Wow! What a journey you've been on. I am sorry for all you've endured and for all you're still facing.
Your situation takes strength and courage. We welcome you to BoneSmart and we're happy you joined us!
Please continue to share your journey and allow us to support and encourage you along the way.

If you will share your surgery dates, identifying each, we will create a signature for you. I will leave our Recovery Guidelines as you may find some of the info beneficial.
Wishing you comfort and all the best as you continue the journey.

KNEE RECOVERY GUIDELINES

As you begin healing, please keep in mind that each recovery is unique. While the BoneSmart philosophy successfully works for many, there will be exceptions. Between the recommendations found here, your surgeon's recovery protocol and any physical therapy you may engage in, the key is to find what works best for you.

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
ice
take your pain meds by prescription schedule (not when pain starts!)​

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.
 
Your journey has been full of trials. I hope that everything turns around and this last procedure lets you take those, much needed, steps forward. Thank you for sharing your story with us. If you need to celebrate or vent, we are here to listen.
 
Welcome to BoneSmart. I’m so glad you found us and decided to post. You have done an excellent job so far of documenting an unusual situation that I think would be of interest to many of our members and I look forward to having you continue your story. Having the photos are great, so don’t worry about posting as many as you think help describe what you’ve gone through.

I admire your positive attitude and I’m sure that has greatly contributed to your ability to get through all this. Things do sound hopeful for this next surgery. You have done a good job of following the instructions from your medical team and that also has helped. Your ROM and ability to walk are the outcome of great doctors and your cooperation
 
Infectious Disease has given the go-ahead on stage 2! Blood markers all indicate the infection is gone! Surgery is next Tuesday. Nervous…. But excited. I feel I’m more prepared than I have ever been!
 
Oh great news!!!!!!
 
Will you please provide the exact January date of your Limb Salvage Surgery as well as the exact date of your Stage One Revision? We'll use this info to complete your signature.

Thanks for joining us. I look forward to following your journey. Best Wishes on the 10th!
@daddydaygo
 
January 30- Limb Salvage Surgery
April 4- Revision
August 29- Stage 1 Revision w/ Static Spacer
October 10- Stage 2

And thank you!
Will you please provide the exact January date of your Limb Salvage Surgery as well as the exact date of your Stage One Revision? We'll use this info to complete your signature.

Thanks for joining us. I look forward to following your journey. Best Wishes on the 10th!
@daddydaygo
 
Will be thinking of you tomorrow as you experience the second stage of your revision, daddydaygo.
Wishing only the best for you. Please let us know how you're doing once you're back home and resting comfortably. Take care!
@daddydaygo
 
Wishing you all the best for your next stage. What a journey you’ve been on. Thinking of you - it’s already the 10th here in Australia so you could imagine it’s all over and done with.
 
Our prayers are with you!
 
Looking forward to your post op post!
 
Surgery went great! It ended up being EIGHT hours because of the amount of scar tissue I had built up in my leg that they had to cut out. They got me to 90 degrees in the OR which is great! The only way is up!

I have nerve block catheters in my sciatic and femoral nerves which are helping so much. I’ve previously opted for the nerve block shots but they only last a couple days compared to the catheters that last as long as I need them. This way I can try to stay away from the opiates as much as I can.

PT came in and we worked on my flexion and extension. We even walked TWO laps outside the room, which is huge! (With a walker of course)

My OS plan is to get a CPM and use that for a couple weeks to help stretch everything out and maybe get some more ROM. (Paired with some active physio as well). I also have a cold machine that doesn’t require ice, just fill it with water and plug it in!

So far, things are falling in place as good as I can hope for.
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What wonderful news! I am very happy for you.
Keep us posted...we're with you for as long as you'll have us. :wink:
Best Wishes and lots of comfort to you, daddydaygo!
@daddydaygo
 
Excellent news!!!!
 
Wow, that's great news. Ever so slowly.
You've got this.
 
Day 2/3 post op: I’ve got my CPM and been in that only going to 90 degrees for 18 hours a day (OS doesn’t want me going past that for a couple weeks at least). When I’m not in that I’m using my icing machine with my heel elevated to allow full lockout of my knee. Unfortunately needing pain medication, but I’d rather do that than suffer.

So far I’m really liking the CPM! I wish I had it for my previous surgeries! I’ll start some active range of motion work with home health soon I imagine.
 

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