Knee Infection* Revision #3 Journey

Hi @celynda .... Going from memory; as the brace was no longer needed, nor an appropriate fit, ten years ago I discarded it... from the front knee bend it probably went 10 inches up and ten inches down. The knee cap wasn't covered at all.
It was lightweight but totally rigid hard glossy plastic or fiberglass. It was comfortable and stayed in place nicely.
I'm sharing screenshots of ACL braces similar to the one I had. The degree of maximum bend is prescribed by the doctor and locked in.
Stockinette is a soft fabric knitted in a tube shape and used under casts to protect the skin. I don't know what the orthos and ortho techs call it; as a seamstress I call it by its fabric name! They have big rolls of it in ortho practices and cut off whatever length is needed.
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Sounds like you are doing great considering everything you have been through.
What about isometric quad tightening exercises until you can build up to straight leg raises? I found isometric quad exercises also very good for relieving that tight band feeling a lot of us get after surgery.
Quad sets! Yes!
 
Stockinette is a soft fabric knitted in a tube shape and used under casts to protect the skin. I don't know what the orthos and ortho techs call it; as
I think tubigrip and easygrip are types of stockinette used for this purpose. Try Googling those terms and see if either would suit you.
 
Stockinette is a soft fabric knitted in a tube shape and used under casts to protect the skin. I don't know what the orthos and ortho techs call it; as
I think tubigrip and easygrip are types of stockinette used for this purpose. Try Googling those terms and see if either would suit you.
The linked ones offer compression... What I have in mind doesn't.
 
December 5 update ~ so much has happened since my last update…

TL;DR: Back to driving, another infection; no hope for eradication; feeling hopeless.

DRIVING - I am once again an independent adult driving as needed. I put the seat all the way back to get in/out and then move it into driving position. I’ve driven to/from Roanoke (2 hrs) several times.

KNEE STATUS - my knee buckles two - four times a day. Fortunately, I’ve not fallen. I don’t use the knee immobilizer unless I’m going someplace new. I’m working on getting a locking knee brace. The orthotics place order a semi custom brace and I tested it out yesterday. It didn’t slip and I felt confident and supported. The OS needs to send his notes and ICD code and then insurance should cover it. Hopefully, it will be sorted before the end of the year.

INFECTION - I have two open wounds on the leg. One day in early October, the drainage was bright green which is a clear indication of a Pseudomonas infection. The PCP prescribes Cipro (the only non IV Drug listed to treat this infection.

I have to interrupt the update with another entry in the “Medical Adventures in Rural America.”

My PCP is five minutes from my house. The Wound Care clinic is 60 minutes from the house in another county. The drive is on a two lane road over Droop mountain (3600 ft). The road is very curvy and no fun to drive in bad weather. I get to the Wound Care clinic and the PA says I need to be admitted to the hospital for IV antibiotics.

This really throws a wrench into my plans as I was planning on having the wounds cleaned, then have lunch with a friend and then go home. I agree to go to lunch and be at the ER within two hours for admission. The hospital is 25 beds and very small.

I was in the hospital for 24 hours and received three doses. Once the blood level was stable, I was discharged for a five day regimen of IV antibiotics via a PICC line. The tiny hospital didn’t have the equipment (ultrasound) needed to insert the PICC so I had to drive 1.5 hours back to the hospital near me. The RN put in the PICC line and then everyday for five days, I had to drive the hour to the tiny hospital for the infusion. What fun!!


Now, back to the regularly scheduled update…

The wounds appear to be healing which is good. I change the bandages daily and put Medihoney on them. I see the Wound Care PA every two weeks. The deepest wound was 5 mm deep and is now 3 mm. Progress, right? Well maybe not. See next section…

OS VISIT ~ saw OS on Monday for 3 month check. Accoriding to the XRay, the implant looks good. I’ll see him again in August for a one year check. The OS was concerned about the infection and the still open wounds. In his opinion, I still have an infection in the metal of the knee and will have always infections. He doesn’t think the wounds will ever completely heal as a result. In his opinion, the only way to completely eradicate the infection is to remove the source (the metal in the knee) and the only way to do that is to do an above the knee amputation.

I asked him to put in another infectious disease consult. He will but also said he figures they deny it because there’s no way to medically ”fix” the infection. Oh well.

In Conclusion, I think I am as good as I am going to get. No one is talking about doing anything to improve the situation - just managing status quo.

I really think I need to get in with a good ID program and will investigate something in Charlottesville VA or maybe go back to HSS in New York. Thanks for sticking with me so far.

@Jamie, do you have any ID or OS recommendations at UVA?
 
I don’t have any knowledge of specific infectious disease doctors. Your best bet is to pick a place you prefer to travel to and make an appointment for a consultation or multiple consultations with several doctors. Given what you’ve written here, if you have the ability to go to HSS, that’s where I would go.

I do think your surgeon is correct that antibiotics will probably not eradicate the infection. When it develops on the metal prosthesis, the bacteria can cover itself with a biofilm that shields it from the treatments. When that happens, nothing fixes things other than a revision. Given your revision history, you would want a completely new surgeon and hospital environment. Something is not working as it should. You really don’t want to continue with an active infection and just try to manage it. That is rough on your overall heath.
 
@Jamie, thanks for the quick response. I'll called UVA's ID clinic and they need a provider's referral. I'm going to ask the OS to do the referral. I am also going to ask HSS to set up a referral.

After I wrote the book above :rotfl:, the office note from my visit yesterday was posted (attached). Seeing this in black and white certainly makes it more depressing.

I am not interested in an amputation so will be pursuing other options.
 

Attachments

  • 4Dec2023_ProgressNotes_Adrados.SHORT.pdf
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I'm so sorry.... what disheartening news for you to face. I agree finding a new ID and new revision specialist is probably your best path forward.
 
I agree also. Finding someone completely new is the way to go. This race isn't over yet so don't give up!
 
I am so sorry for all you've gone through. Yet, it seems, through it all, you've remained diligent in getting care and answers.

Coming here to share with others who've also had replacements, is a good thing. Even though we haven't had your exact experience, we can empathize with you and offer moral support, along with whatever help we can offer. Reading your posts and letting you know there are real people here who care is something we can do, even though we can't be physically there for you. We hope your situation can be resolved, or at least bettered, at some point, and maybe a totally new set of eyes and experience is exactly what you need.

A doctor, or doctors, who have nothing to do with your current doctors/s may be the best thing for you right now. Make sure they're not associated with each other at all; if they know one another in any way they may tend to go along with their colleagues just to get along. You want totally independent viewpoints from your previous opinions so that, whatever the answer, you know you're getting a totally different set of opinions and expertise. Even if the answers are the same, you can rest in the fact that you were given opinions free of any connections to past opinions.

I hope you can get some clarity and maybe even some different treatment ideas that will help. I know from my own much more minor issues, compared to what you're dealing with, that even if I don't like the answers, at least I did everything I could to see if there were any new ideas or help available.

Many of us here are thinking of you, sending good wishes and praying for you. I hope that's a help as you navigate through the coming days.
 
Sending hugs and prayers, we’re here for you. :console2: :prayer:
 
It is definitely not the time to talk about amputation. You just need to get to the right people to deal with this successfully. Hang in there….it may take some time to find those doctors. We’ll be here to support you.
 
Adding my hugs to the queue, I agree that your battle isn’t over yet- HSS sounds like a great idea for you.
Sending you my best wishes for some healing and new, capable doctors.
 
Does HSS have special help for out of towners? I’m sure staying somewhat local is more convenient and cost effective, but I think this infection is a special case and really needs an expert, though I’m sure there are extra expenses staying up there near HSS, unless they have some options for you. :console2:
 
It is good to read that you’re not giving up and still seeking options. I wish you the best and hope you’ll stay in touch so we’re able to follow your progress and continue supporting you.
@celynda
 
I wasn’t here for your earlier surgeries but I read your entire thread today and am praying for your healing. Please keep posting because I know there are many here who want to encourage you and help if they can.
 
Large hospitals like the Hospital for Special Surgery usually have nearby hotels for out of town patients. Many times there are reduced rates for people who have treatments and must stay near the hospital for extended periods. They are usually very helpful to folks who are from other areas.
 
You really don’t want to continue with an active infection and just try to manage it. That is rough on your overall heath.
Sending hugs and prayers. Really feel for you. I can't imagine what it must be like having to drive so far in tough conditions to get treatment.
Really agree with Jamie though on the effects of infection and health.
I have a congenital kidney malformation and am very prone to UTIs. I also had strep A septicemia last year
I know how debilitating infection can be and also the effects of strong antibiotics. You need to get a more permanent fix for the infection. I noticed though the doctor's letter said that whilst it is draining the general septicemia risk is low- but that's not a long term solution.
 
EalingGran, Jamie, MSuki, Layla, Jockette, and CricketHip, thanks for all of your support.

Last Tuesday, I sent the report to Dr Chalmers at HSS via the MyChart portal. He responded within hours and said his office would be glad to coordinate an appointment with HSS’s ID group once I am “able.” I wrote back and said I could travel and to please set something up. On Friday, HSS called. On Dec 19 I have appointments with ID and Dr Chalmers. It’s fantastic to have this organized so fast.

On this (and past trips to HSS), I’ll stay at the Helmsley Medical Plaza which is just around the corner from HSS. HSS can provide transportation from the hotel to the doctor‘s office. [for future reference, HSS does have a list of local hotels with HSS rates]

My goal for this trip is to have a plan for treating/eradicating the chronic infections. I don’t know if another revision is in the plans. Icing on the cake would be to have a plan to improve my mobility so maybe I can look forward to walking without the walker.

In hindsight, maybe I should have insisted or tried harder to get to HSS in August when the infection first started.

I’ll post an update once I see the doctors. Thanks a million for all of the support.
 

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