Knee Infection* JSA's OA and RA Journey

[jsa]

I am so sad and am feeling really quite low right now. Like a lot of you here, my story is a long one so I'll try to be brief to give you a better understanding of my situation.

Having RA, OA, CPPD plus a rotated tibia meant I did have 6 operations on the right knee/leg before the following operations:

1. Nov 2019 Right TKR (incl patella button)
2. Feb 2020 Arthroscopy, debridement, biopsy for ?infection - had a loose prosthesis with pain, redness, swelling, positive Gallium scan - however cultures turned out to be negative except for one which they thought must be contamination.
3. April 2020 1st Revision TKR - intra op fractured femur requiring cerclage wire and an immobilising brace plus I had a post op respiratory arrest and was intubated for 5 hrs in recovery. I was also told there was severe arthrofibrosis, something I've had trouble with in other parts of my body. Unfortunately I still had restricted ROM when weight bearing at 6 weeks and noticed I was unable to lift my leg.
4. June 2020 Arthroscopic MUA and repeat cultures - Dr unable to bend/manipulate knee at all - cultures done but put into formalin so no results (I bet when doc was told, the nurse who did it would have been hiding )
5. Oct 2020 Leg still swollen, hot, red and painful. Referred on to revision specialist. New doc did more tests which showed stuffed quad and patella tendons (why I cant lift it), malalignment - a femorotibial mismatch with a 20 degree internal rotation, lots of arthrofibrosis and he (along with my rheumatologist) believes I have a culture-negative infection in the knee joint. I am not so sure.
At this point I am to have a 2nd revision starting in Dec (2 stage this time) but he is researching it further with other 'revision' colleagues and the makers of the prosthesis. At this stage we think it will go like this.... first stage is to pull out existing prosthesis replace with antibiotic spacer, leave the CVC line in for IV antibiotics, immobilise in brace for the quad/patella tendon repairs, then review at 6-12 weeks.
6. About February 2021 - hopefully get to put in a new hinged joint prosthesis so it wont malalign again. He will also cut out all the arthrofibrosis and place me on a CPM to get back some ROM.

I think I'm just looking for some help me to get me through the rest of the journey so I dont feel so alone. Sorry this was so long.....

 

[Pumpkin]

@jsa ,
Welcome to BoneSmart, glad you joined us!
You have been through a lot, sorry you are facing even more surgeries.

You will find or members will find you who have also had complex recoveries. Just click on a revision or infection prefix in the post op hip forum for a list of members with similar challenges.. I am going to tag @PegGar16 who had a very complex recovery to come and talk to you.

Keep us posted on how you are doing.

 

[Jaycey]

@jsa Welcome to BoneSmart! So sorry you are going through all this. A tough journey for sure.

We can't change things but we will certainly be here for you. Stop by anytime - day or night. There is always someone on the board to support you.

Please keep us updated!

 

[jsa]

Thanks Pumpkin and Jaycey, I have been looking at the other threads and yes there are many who have had difficult times, I'm surprised so many because you mostly hear of how great people feel after a TKR. I did see some posts by @PegGar16 and her story sounds very similar. It would be nice to have her come on.

Over the years Ive had tons of operations, three of which I was in hospital for 4-6 months each time so I dont usually have negativity problems as I've always believed that whatever the problem, it will end at some stage.

But this time has been so stressful and it's drawn out pain so I'm finding myself often tearful and wanting to give up on ever walking again normally. Thats silly I know but when Im physically hurting 24/7 its hard to see it objectively.

 

[Jaycey]

I'm surprised so many because you mostly hear of how great people feel after a TKR.

The nature of this board is that you will likely see more members here who are having problems. For every member here there are hundreds who have an uneventful recovery and are off living life again.

I dont usually have negativity problems as I've always believed that whatever the problem, it will end at some stage.

Great attitude but it is very difficult to live in pain. It wears you down.

I wish you didn't have such a long wait for stage 1 of your revision. But I guess every healthcare area stretched to the max these days.

 

[jsa]

Our healthcare isn't too bad because we've had very little covid here but the Dr is the only revision specialist and because the op will be complicated by several procedures at once, he wanted me to be the only one booked for that afternoon. The soonest free day was Dec 16th.
I don't think they are worried about any infection spreading as it's been chronic so far. It's the pain I can't handle. I do have fentanyl patches/palexia but I'm worried about using them too often and then have to be given higher doses during surgery which can cause another respiratory arrest (that has happened a few times afterwards in recovery). So it has to be unbearable before I take anything.

 

[Jaycey]

the Dr is the only revision specialist and because the op will be complicated by several procedures at once, he wanted me to be the only one booked for that afternoon

Ah - so you get the VIP treatment! Sounds like you have the right expert and team to get this revision done.

Can you use a TENS machine for pain?

 

[Celle]

Hello @jsa

Please will you tell us the full dates of your knee surgeries, so we can make a complete signature for you? Knowing the exact date will help us to advise you appropriately in the future.
Thank you.

 

[jsa]

Jaycey ...Lol ... yes - at least I wont be waiting til last on the list

My memories of a tens machine were bad ones... only ever had it once after one of my spinal fusions and instead of it being a relaxing pleasant experience, it felt like little electric shocks zapping me so I swore never again...
I've been told to try hemp oil but I'm too scared of the unknown and my research says to stop it before an operation anyway as you can bleed more.

 

[jsa]

Celle this is my knees history so far:

1973 Osteotomy R Tibia
1974 R/o Loose Hardware R Tibia, Open Exploration Knee Joint
1990 Arthroscopy L Knee, R/o Loose Bodies L Knee
2008 Arthroscopy R Knee
2011 Arthroscopy R Knee, R/o Loose Body R Knee
2016 Partial R/o Patella R Knee
5 Nov 2019 R TKR
1 April 2020 Arthroscopy R Knee, Biopsy, Debridement, Cultures
17 April 2020 Revision TKR R Knee - Cerclage Wire to Fractured Femur
29 July 2020 Arthroscopy R Knee, MUA, Biopsy, Debridement, Cultures

 

[Celle]

Thank you for all those dates. Your poor knee! I'm sorry you've had to go through all of that.

Did the same surgeon do all of those surgeries?
I'm glad you have a revision specialist to do your planned surgery in December.

 

[jsa]

Celle... Yes the same surgeon except the ones before we moved here in 2000. He also did both carpal tunnels and my shoulder rotator cuff tears but I had frozen shoulder due to arthrofibrosis afterwards and I accidentally tore it back off the bone so I had to have revision surgery to anchor it again. It's good now but the other shoulder has tears and calcific tendonitis which has been worsened by putting my weight on the forearm walker (the physios thought crutches would be worse).

Lol.. my ortho doc said I was his 'conundrum' so he referred me to an Associate Professor who studied complex revision surgery at Oxford in the UK. I was told he only takes referrals from other specialists and is super busy so I just have to wait until December.

 

[Jaycey]

@jsa Sounds like you might have had your TENs machine cranked up too high. The pulse should be very gentle - just feel like tapping. New technology now offers wireless as well. I have chronic spinal pain and love my wireless TENs. Here's an article from our Library: TENS machines for pain management.

 

[jsa]

@Jaycey I know lots of people who love the machine so you are probably right, it was certainly uncomfortable to me back then. Both my lumbar and cervical spine need further fusions but they are on hold with the ?infection in my knee. Ive already had a deep wound infection in the spine which resulted in 6 spine ops and 6 mths in hospital and I dont intend going through that again. I just have to hope the myelopathy symptoms don't get worse in the mean time.

Sorry to hear you have spinal pain too, have you had surgery on it or just decided to treat it conservatively? Sounds like maybe I should try the tens again.

 

[Jaycey]

have you had surgery on it or just decided to treat it conservatively?

I had spinal decompression for severe tethering of sciatic nerve plus degenerative discs, spinal stenosis and Spondylolisthesis. The op took away the severe pain on walking but I will always have back pain. I should have fusion but I am not the least bit brave.

Gosh - six spinal ops - you are a real trooper! I found that recovery a major challenge.

If you can afford it do try one of the newer TENs units. I found if I use it for 2-3 days in a row for several hours it really takes the edge off and eases spasms. I can then go for several days without using it.

 

[PegGar16]

Hi @jsa! I just finished reading your thread and see that you have a lot going on. There are some similarities with us. I hope you don't mind but I am going to quote some of your messages and respond otherwise I will be jumping all over the place...lol

I am so sad and am feeling really quite low right now.

You and your body have been through quite a bit of trauma. My doctor told me she would have been worried about me if I was not going through these feelings. We go into the first surgery believing everything is going to be alright and it is .....until something goes wrong...And that happened with a few
of my surgeries. I just kept telling myself that everything is fixable, and sometimes it took a lot of convincing. I did go for for help to deal with everything........you get worn down.

I also had a ruptured patella tendon and could not lift my leg. They tried to fix it a couple of times but ended up with the infection damaging them too much. The quad tendon and patellar were also gone by that time. Now I was a complex or complicated case..LOL

Lol.. my ortho doc said I was his 'conundrum' so he referred me to an Associate Professor who studied complex revision surgery at Oxford in the UK. I was told he only takes referrals from other specialists and is super busy so I just have to wait until December.

That is a great move by your ortho. Many don't like to admit they may need some help. Mine sent me to a specialist at the Mayo Clinic. He was known for taking the "special" cases. It will be worth waiting for December. I had to learn patience with it all....I am not a patient person normally.

 

[jsa]

@Jaycey I'm not sure its being brave having spine surgery, at least in my case, I didnt have much choice in many of them. You sound like it's been quite a problem for you. Decompression isn't that much different to fusion pain and recovery wise, they just stabilise it better in fusion. I agree its best to put any surgery off if the pain and symptoms are manageable. I did have 2 decompressions but they needed fusions later on when the adjacent levels went on me.
If you have questions, just ask...

 

[jsa]

@PegGar16 Hi there..... thanks for the words of encouragement, its good to hear someone who has been through so much still being positive. What happened in the end, can you lift your leg at all? Did he try grafting the tendons? Are you still in pain?
The thing I hate is not being able to bend my knee to get into a car. I have to open the door as wide as it will go. Also I have a lever to automatically push the seat back to give me more room. I saw some suggestions to get in the back seat and lay on it, that might help. I have a permanent disabled hanger for the car so we try to get a designated disabled space as the spots are bigger than normal ones but its not always possible. Anyway, my leg sticks out when Im sitting in a chair so I rarely go out these days because people kick it accidently and that can be torture.
Yes Im glad my ortho referred me on, I found him wonderful but I agree he needs help with this one. The new guy picked up on 2 new problems the ortho hadnt (extensor mechanism and malalignment problems). He confirmed them with tests. The other 2 problems the ortho had already told him about were the arthrofibrosis and the fact I may still have infection there.
Thanks for the reply, I will go and read some more to see where you are at now....

 

[PegGar16]

Good morning! My knee/leg is working well these days. I can even squat down to play with the grandson They reconstructed the extensor mechanism with an allograft when the final knee prosthetic was replaced. It amazes me what can be done these days. They transplanted a patellar tendon, patella and quad tendon all in one piece. The patellar tendon is attached to the tibia and the quad tendon is sewn into the quad muscle. It is not pretty but it functions...LOL. This was done in 2017 and I know there have been advancements made on the reconstruction process.

I understand completely about not being able to bend your leg and spent a lot of time in the back seat of our SUV. Due to the damage from the infection and multiple surgeries they had to do a flap over my knee. With that surgery the spacer was replaced with a static spacer and 2 rods were put in my leg so I could not move it at all. The immobilizer looked like a plastic cast from my toes to upper thigh. This helped in restaurants, always asked for the extra chair to put the leg up (ha!ha!)

The arthrofibrosis I don't have but I know that is tough one.

I hope your new specialist is bringing in a infectious disease doctor. It is really important to get rid of the infection...and lets face it..that is not the OS's specialty.

I know it is a long process but it was worth it for me. I am always here for any questions despite the time difference

 

[jsa]

@PegGar16 Gosh yes we are similar! Thanks for offering to answer my questions.
I'm not sure exactly what he is doing to the quad/patella area or what kind of immobiliser he will use but I know he said I wont be able to weight bear for a 'long time' afterwards. I already have a Donjoy X-Act ROM Knee brace from the other immobilisations but he may have something different in mind, we will see. I know mine wont be the same surgery as yours but I really don't want to go through this again so having someone to talk to would be nice. Oh and thanks for the heads up about asking for a chair, I will.
He told me will definitely be consulting with the Infection Control Doc pre-op. I have an appointment with him 1 week before the op where he said he will have more answers for me if anything changes re the way we will go about the surgery.
ahhhh patience patience.... I just want to fast forward 6 months and go to some sandy beach where I can walk and play with my granddaughter.