Knee Infection* Cakes 2114 - Knee Recovery Thread

[Cakes2114]

I am a complicated situation according to my doctor.

9 knee surgeries mainly for patella dislocations through my early 30’s. At 41 I went to three doctors who all felt I needed a TKR. Had that surgery on 7/11/18. Initially I was flying though physical therapy (I had done it many times before) but I could not get full extension. They did a scope for adhesions 11/2018.

February 2019 I was declining and started limping and had pain. Finally got in with the OS who did the surgery. He initially kept saying this is normal recovery but did a fluid draw which came back in March as a Staph infection. Three weeks of oral antibiotics and then a new culture for 7 days I was infection free!

I started feeling good again and found myself being able to walk and do things again.

I did have allergy testing in June per the suggesting of my General Practitioner. He agreed my knee may feel better but it was still grossly swollen and looked off!

In August 2019 I started having pain again. I ignored it initially (I am a Mom of a 11, 9 and 7 year old) and we are busy! October I hit my point and called the OS. I spoke to the PA and explained my issues with swelling and concerns with pain.

She dismissed me and said there are no more surgeries that can be done and to keep my appointment for January. She then said if the doctor approved she would send in a script for me. Well they sent me Celebrex which I am allergic to and found out a few months after my TKR (guess they never marked it down). I called up and reminded them I was allergic to Celebrex (and reminded them this was found when I was a patient). The PA said she would talk to the doctor. I never got a phone call just a script for Naproxen sent you me. No return call.

By November I was struggling a lot so I spoke to my PT and they suggested HSS in NYC.

Then I fought with the office to get my medical records. They were switching to join a major Orthopedic Group and just would not sent my records. By December I got fed up. I called and demanded my medical records or my lawyer would be contacting the office. Within a week I got all of the written files. I then had to go and get my original MRI from before the TKR from the facility I had it out since the OS office would not release.

I then sent that to HSS to Dr. Bostrom. Again I was missing some information (XRays) so I went to the hospital to get those. I sent those to HSS too.

I finally got a call back from HSS in late December saying that Dr. Bostrom would take me as a patient.

My appointment was in February. They did new xrays, MRI, blood work and took a fluid draw from my knee. Dr. Bostrom said he did feel my knee was not stable and my patella alignment was very off. After three weeks Dr. Bostrom called and said I was complicated. The initial 7 days showed no infection but by day 21 there was something. P acnes infection on top of the joint not being stable.

I was scheduled for a two stage revision of the TKR on March 23, 2020. Needless to say this was cancelled for the Coronavirus.

I am currently struggling more everyday. Nights are miserable and days are difficult. My knee has started to give out and it is extremely stiff.

I am rescheduled for June 18 for the first part of the two stage revision. As the days pass I am getting more and more concerned that surgery may not happen.

I completely understand right now is not the time for an “elective” surgery but if this surgery does not happen in June I am going to lose my mind.

 

[Celle]

Hello @Cakes2114 - and

You've certainly had a bad time with your knee. Which knee is it, by the way?

I'm glad you changed surgeons and decided to go to HSS.

I'm sorry your first stage revision had to be postponed and I really hope that it gets done in June. Your situation is a bit more urgent than a normal elective surgery, because of the danger of lingering infection, so I hope your surgery will be one of the first to be done.

I've moved your post from the June Sunbeams thread, because that thread is really just a list of people having surgery around the same time as you.
This is now your thread for your knee. Here we'll be able to talk about how you are getting on, without disrupting the June Sunbeams thread.

On BoneSmart, each person has her/his own thread, where the main focus is their knee, so please continue to post on this thread from now on. If you can, bookmark it, so you can find it easily.

 

[Jockette]

Welcome to Bonesmart. I’m sorry you’ve had such a difficult time, both physically, and with your original surgeon’s office.

Come here and vent all you want, we understand.

 

[Cakes2114]

Hello @Cakes2114 - and

You've certainly had a bad time with your knee. Which knee is it, by the way?

I'm glad you changed surgeons and decided to go to HSS.

I'm sorry your first stage revision had to be postponed and I really hope that it gets done in June. Your situation is a bit more urgent than a normal elective surgery, because of the danger of lingering infection, so I hope your surgery will be one of the first to be done.

I've moved your post from the June Sunbeams thread, because that thread is really just a list of people having surgery around the same time as you.
This is now your thread for your knee. Here we'll be able to talk about how you are getting on, without disrupting the June Sunbeams thread.

On BoneSmart, each person has her/his own thread, where the main focus is their knee, so please continue to post on this thread from now on. If you can, bookmark it, so you can find it easily.

Thank you for the help! I have been on this site lurking since 7/11/2018 and last night spent two hours reading things.
It is time to come out and get some support

 

[Cakes2114]

I am a complicated situation according to my doctor.

9 knee surgeries mainly for patella dislocations through my early 30’s. At 41 I went to three doctors who all felt I needed a TKR. Had that surgery on 7/11/18. Initially I was flying though physical therapy (I had done it many times before) but I could not get full extension. They did a scope for adhesions 11/2018.

February 2019 I was declining and started limping and had pain. Finally got in with the OS who did the surgery. He initially kept saying this is normal recovery but did a fluid draw which came back in March as a Staph infection. Three weeks of oral antibiotics and then a new culture for 7 days I was infection free!

I started feeling good again and found myself being able to walk and do things again.

I did have allergy testing in June per the suggesting of my General Practitioner. He agreed my knee may feel better but it was still grossly swollen and looked off!

In August 2019 I started having pain again. I ignored it initially (I am a Mom of a 11, 9 and 7 year old) and we are busy! October I hit my point and called the OS. I spoke to the PA and explained my issues with swelling and concerns with pain.

She dismissed me and said there are no more surgeries that can be done and to keep my appointment for January. She then said if the doctor approved she would send in a script for me. Well they sent me Celebrex which I am allergic to and found out a few months after my TKR (guess they never marked it down). I called up and reminded them I was allergic to Celebrex (and reminded them this was found when I was a patient). The PA said she would talk to the doctor. I never got a phone call just a script for Naproxen sent you me. No return call.

By November I was struggling a lot so I spoke to my PT and they suggested HSS in NYC.

Then I fought with the office to get my medical records. They were switching to join a major Orthopedic Group and just would not sent my records. By December I got fed up. I called and demanded my medical records or my lawyer would be contacting the office. Within a week I got all of the written files. I then had to go and get my original MRI from before the TKR from the facility I had it out since the OS office would not release.

I then sent that to HSS to Dr. Bostrom. Again I was missing some information (XRays) so I went to the hospital to get those. I sent those to HSS too.

I finally got a call back from HSS in late December saying that Dr. Bostrom would take me as a patient.

My appointment was in February. They did new xrays, MRI, blood work and took a fluid draw from my knee. Dr. Bostrom said he did feel my knee was not stable and my patella alignment was very off. After three weeks Dr. Bostrom called and said I was complicated. The initial 7 days showed no infection but by day 21 there was something. P acnes infection on top of the joint not being stable.

I was scheduled for a two stage revision of the TKR on March 23, 2020. Needless to say this was cancelled for the Coronavirus.

I am currently struggling more everyday. Nights are miserable and days are difficult. My knee has started to give out and it is extremely stiff.

I am rescheduled for June 18 for the first part of the two stage revision. As the days pass I am getting more and more concerned that surgery may not happen.

I completely understand right now is not the time for an “elective” surgery but if this surgery does not happen in June I am going to lose my mind.

it is my right knee
Always my right knee and it all started from a traumatic basketball injury when I was 16.

I should add I did find out I have a nickel, cobalt and gold metal allergies. I also currently have a Smith and Nephew Legion replacement which has been described as the hypoallergenic knee replacement so I have absolutely no idea what they are going to put in my knee.
Dr. Bostrom said it will be a game day decision. Since HSS keeps all on stock he will make a choice when he goes in.

 

[Celle]

Thank you for replying so quickly.
Fingers, toes and everything else crossed, hoping that your surgery can go ahead in June.

 

[Momma-me]

Oh my!! I am so very sorry!!

So many of us can relate to the frustration and time and pain and more surgeries.... etc It can be, not only physically exhausting but emotionally and physically as well.
You are not alone!

Many virtual hugs to you
xo

 

[Cakes2114]

From what I understand most TKRs are elective including revisions.
I am in a odd situation and not sure what to do.
I am due for a two stage knee revision due to a P Acnes infection. It was supposed to be on March 23rd in NYC at HSS.
Covid-19 hit and it is postponed to June 18th. Issue is my knee is not doing well. Every night there is a ton of pain (it has gotten worse) and more recently my knee is giving out.
I should add no fever just pain increase and knee giving out.
No I honestly do not want to be in NYC now. Any idea of what the doctor would recommend for now with the newest issues? Do I call the doctor because if the giving out? P Acnes is a slow growing infection so I can wait until June but I don’t know if that’s the right thing.

 

[Pumpkin]

@Cakes2114,
You'll notice that I have merged your newest thread with your original recovery thread. For several reasons, we prefer that you only have one recovery thread:

• That way, we have all your information in one place. This makes it easier to go back and review your history before providing advice.
• If you keep starting new threads, you miss the posts and advice others have left for you in the old threads, and some information may be unnecessarily repeated
• Having only one thread will act as a diary of your progress that you can look back on.

So please post any updates, questions or concerns about your recovery here. If you prefer a different thread title, just post what you want and we'll get it changed for you.
If you need an urgent response to a question, just tag a member of staff.

Many members bookmark their thread in their computer browser, so they can find it when they log on.

 

[Pumpkin]

Cakes2114,
Do you have an infection control MD involved in your care? They should be monitoring your infection and giving you appropriate antibiotics to manage your infection, slow growing or not.
We have an article in the library that might interest you:
Acne pathogen implicated in peri-prosthetic infections

Call your surgeon and let them know about the increasing pain and giving way of your knee.

 

[Cakes2114]

Unfortunately the day I was supposed to meet with the infectious disease doctor everything was cancelled (March 17th).

I can definitely call or leave some message because something is off.

 

[Cakes2114]

@Cakes2114,
You'll notice that I have merged your newest thread with your original recovery thread. For several reasons, we prefer that you only have one recovery thread:

• That way, we have all your information in one place. This makes it easier to go back and review your history before providing advice.
• If you keep starting new threads, you miss the posts and advice others have left for you in the old threads, and some information may be unnecessarily repeated
• Having only one thread will act as a diary of your progress that you can look back on.

So please post any updates, questions or concerns about your recovery here. If you prefer a different thread title, just post what you want and we'll get it changed for you.
If you need an urgent response to a question, just tag a member of staff.

Many members bookmark their thread in their computer browser, so they can find it when they log on.

No problem thank you for fixing

 

[Sara61]

Just for your own peace of mind you should definitely call or message them. Sending you virtual hugs Stay safe xx

 

[Pumpkin]

Cakes2114,
Call the ID you were supposed to meet with and ask for a Telehealth appointment. They should have the results of the cultures that were taken, and be able to advise you during these challenging times.

Most if not all insurances will pay for Telehealth appointments.

 

[Jamie]

Pumpkln is right. You need a consultation with infectious disease doctor and I would also recommend that you arrange a telehealth consultation with your surgeon as well. Both should be advised of any changes in your pain levels or functionality. Be sure and ask, but I'm pretty sure these consultations will be covered by insurance because of the pandemic.

 

[Cakes2114]

Thanks everyone! I left a message (HSS you can do non-emergency online messages through the portal).
I did leave it with the OS since he is my only contact now since the ID appointment was cancelled.
If they do not respond tomorrow I will give a call.

 

[Cakes2114]

Well folks I spoke to the doctor office and my first surgery has been moved up to May 4th. I am waiting on details for pre-op and my nerves for going into NYC are getting to me.
I am figuring the HSS would not schedule this if there butt a tremendous risk relating to the coronavirus but still makes me nervous.

 

[Cakes2114]

I found out today I will more than likely be going home with IV antibiotics and a PICC line.
They are probably going to allow for me to use a IV Bulb or Homepump.

Has anyone here use this?
Can you tell me how hard this is? Anythjng specific I should know ahead of time?

PS I am not sure if I should post this here or somewhere else.

 

[Pumpkin]

@Cakes2114
This thread is the best place to post any questions, concerns, or updates about your recovery.

@lovetocookandsew went home with a pain ball similar to what you will be using.
We have had other members wo went home with an IV Bulb or similar, they did very well. If you click on a red infection prefix in the knee recovery forum a list of members with knee infections will come up, you may find someone there with a similar experience.

 

[sistersinhim]

This is your thread and the correct place to put it. Good job! This will give you a little bit of information about a PICC line:

PICC Line

What is a Peripherally Inserted Central Catheter? A PICC is used for the long term delivery of intravenous medication, chemotherapy and fluids. It is often recommended when suitable veins for injections are difficult to access. A PICC is a long thin soft tube that is inserted into a large...

bonesmart.org