TKR Turtle still hoping to cross the finish line

[maryo52]

Need some input, friends!

I'm at 10 months and the knee is still hot and swollen. It's bending fine. There's no pain in using it. However, it gets rather irritated when I drive more than 30 minutes, and after sitting or being in the car for a period of time, it's pretty creaky getting going again.

So I was going to wait and see the ortho at my anniversary to bring up this problem. But I'll see him when I take my friend in for her TKA on Oct 10th and he'll wonder why I'm wearing a compression brace.

I've researched reasons for post-TKA effusion, and none of them seem true of me (metallosis, infection, plastic particles, regional pain syndrome). What do you think?

 

[WaterBaby]

Arthrofibrosis can cause persistent heat, swelling and stiffness in the joint. The process can go on for as long as a year or so. That is what my Ortho has told me. He said that is it self-limiting (meaning it does eventually stop), but has a schedule all it's own, without much rhyme or reason. My arthrofibrosis was going full tilt the first four months after my first TKR before it quieted down significantly in the month before the revision. It now appears to be coming back again but I am hoping not as severely and for a shorter duration. It is incredibly frustrating and demoralizing to me. I sure hope that you do not still have active arthrofibrosis. Keep us up to date when you see your Ortho.

 

[ChefHuber]

My knee is more warm/hot than not. I asked my OS and he isn't concerned. I'm always worried about gout since I have struggled with that for the past few years.

I know that isn't much help, but I have similar sensations. Ice pack feels really good.

 

[Jamie]

Mary....I'll tag Jo and see what she has to say. @Josephine:

My guess is that you're just going to need to give yourself more time. I know that would not be what you WANT to hear, but it is certainly better than having any of the options you found in your internet search.

 

[Josephine]

I would tend to agree with Jamie - much as it grates, sometimes these things can take an age to settle down. However, if it were me, I'd want some reassurance from the surgeon that there's nothing going on to be worried about. Can't hurt to get his eyes on it.

 

[maryo52]

Thanks all. I'm actually not worried. After what I've been through, this is small potatoes, and I'm sick of doctors!

Waterbaby, yeah, my OS did say the synovium would be inflamed for a while due to the arthrofibrosis. However, when I last saw him (April), I think he said it would clear up in a couple of months. So I'm taking it his prediction was off, is all.

 

[maryo52]

Have been busy this week helping my friend through TKA with the same surgeon as me. She had hip replacement a year ago. I got a little maudlin, having various unpleasant memories refreshed. Fortunately my friend is doing so much better than I did.

Anyhow the OS asked me how my swelling was. It has not changed in months. I had contacted him way back in May and he said he tried for a month and a half to get hold of me, didn't leave a message because of HIPPA. I think he was trying my cell, which is turned off most of the time. Oh well.

The swelling goes down somewhat overnight, but as I shower I can feel the tightness develop, it's that fast. My tkr knee is still twice as wide as the normal knee in front. Anticipating that at my annual he'll say the obvious: it's a matter of time and patience. It's not a big problem but when I travel in the car with my knee bent it starts to hurt after a half hour or so. We'll be driving to Florida beginning of January, so that should be interesting!

 

[sunflower]

The swelling goes down somewhat overnight, but as I shower I can feel the tightness develop, it's that fast.

Mary, you have the patience of Job! How frustrating it must be to be bound to a knee that defies normalcy. :rolleyespink: When you ride to FL, perhaps you should pop some ibuprofen, zip yourself in a sleeping bag and zip tie it to the roof rack.

 

[maryo52]

Thanks for the great idea, Sunflower. Though I'd rather have a good supply of percocet for that trick!

 

[flhiker]

Dear "Friends of Turtle",
Despite my lack of replies on this thread, I have been keeping up with you all.
I recommend this website to everyone I meet who is considering knee replacement. This group consistently offers positive encouragement and sound advice to anyone who asks. I've been doing well myself at 9 months post-op, but I'm still reading the posts. I know I'll have to have my other one done in a couple more years, so I want to stay in touch with this string.
Wishing everyone deep bends and little swelling!

 

[Jamie]

Good to hear you're doing well, flhiker......thanks for the update!

 

[maryo52]

Today was my one year anniversary check up. For those who aren't familiar with my saga, I had an aggressive case of arthrofibrosis. The result was that my ROM tended to go in reverse, until the ortho removed the scar tissue arthroscopically. At that point I took over my own PT and achieved full ROM.

Today the ortho remarked that minus 30 cc of fluid in my knee I'd have at least 10 degrees more flexion. More than that, there is a chronic discomfort associated with my effusion. Apparently arthrofibrosis results in thickening of the synovial membrane. I can get it halfway settled down with regular NSAIDs, but when I stop the NSAIDs, the effusion returns full on. The NSAIDs don't bother my GI system but cause insomnia and anxiety.

The effusion makes it so that I have very little strength in that knee when bent. Being long legged (34" inseam), getting up out of chairs and off toilets is hard, and has caused chronic issues with my right shoulder, which does the lifting my leg cannot do. Plus at the end of the day I am absolutely exhausted. Moving my TKA leg takes about 3x more effort than the good leg.

The upshot of today's visit was that blood was drawn to rule out infection, and I'm being referred to a rheumatologist. The ortho said he would do a synovectomy arthroscopically if I was desperate but he's very conservative and doesn't want to risk introducing infection via any procedure, not even drawing off fluid (which would only provide temporary relief anyhow). The last year was pure hell and I'm not in favor of taking any risks whatsoever.

If any of you have any experiences with effusions, I'd love to hear from you. All in all, I got what I wanted -- good ROM and no joint pain. However, this effusion is kind of like driving a car with the brakes on, and it does get painful if bent 90 degrees or more for more than 20-30 minutes.

One last thing. This forum got my through days that were awful and seemingly endless. I am so grateful to all of you for your support, encouragement, and sage advice.

 

[Jamie]

Mary.....I'm glad to hear you are doing okay on your first anniversary. Hon, you have been through so much. I still believe that, with some time, your knee will settle down. Keep that thought!!!

 

[Josephine]

One of our premier troopers for sure! You deserve the gold medal for guts and determination!

 

[maryo52]

Josephine,

How many times did my posts consist of so much hand wringing, and you told me things would be OK? Of course we were both right. I had a gut feeling something was not right, but then you knew that most things get worked out in time.

But that still leaves me with this big effusion and what to do about it. My internet research has turned up very little other than synovectomy, and experimentation with RA drugs on it.

Anyone had experience with chronic knee effusion/synovitis and a little wisdom to share with me?

 

[Josephine]

Well, it would seem logical that since you have had fibromatosis the synovoium might be similarly affected.
Increase synovium = increased synovial fluid (effusion).
That would be where the rheumatologist comes in.

And where it moves outside my area, I'm afraid.
Hope he/she can help.

 

[Bees Knees]

Hi Mary,
Happy One Year anniversary! I am glad you are doing better. It was an intersting and challenging year but we made it! Yahoo!

 

[WaterBaby]

Congratulations on your one year anniversary, Mary! That is a big milestone! You deserve a huge hug and a pat on the back for forging through the ups and downs that you have experienced, that is for sure. I am sorry that you still have the effusion. It is frustrating to have the persistent swelling but really good that it at least does not come with the severe pain.

Because I have RA I see my rheumatologist every 8-10 weeks. I am on a DMARD (methotrexate) and an NSAID (celebrex) to keep the inflammation at bay; the RA is pretty much well controlled on the maximum dosages of meds. The MTX does not seem to be doing much in terms of the swelling and inflammation in my TKR knee, unfortunately, but the Celebrex helps a bit with the pain. When I had my TKR revision in August, my OS did a complete synovectomy. Time will tell if my effusions will eventually go away; I am hopeful that once the arthrofibrosis dies down that the heat and swelling will lessen, as well. My rheumatologist told me at my last visit that in his career he has only seen one other knee with such severe arthrofibrosis and accompanying swelling and inflammation like mine. He tells me to continue to be hopeful and to give it a year OR MORE to settle down. So I am following your lead LOL.

I think its a good idea to see a Rheumatologist to see what he might recommend. And everyone responds differently to the meds so don't be put off when I say that the RA meds have not strongly helped my effusions in my TKR knee. They could work fabulously for you (and I really hope he has some good ideas for you!). Keep us posted.

 

[maryo52]

Thank you Mary Pat.

I can't see this effusion lasting forever. I also have a hard time understanding yours since your synovium was removed. Weird.

Anyhow, I got through the last year being tireless in pursuing "answers," and I'll continue to pursue possibilities for this as well. I wouldn't care but it really does affect me. It would be a bonus to have that knee actually look normal again.

 

[Josephine]

When I had my TKR revision in August, my OS did a complete synovectomy.

Forgive me for being picky when I point out that the synovium is a very large membrane covering the entire inside of the knee joint which goes into all kinds of nooks and crannies and up a sizeable distance of the leg above the patella. It would be next to impossible to do a total synovectomy. He could excise large parts of it, mostly what was visible, but there would always be quite a bit remaining. However, in your situation, excising the largest parts would suffice for the most part.

This is (1) a sagittal section image of the knee joint, (cut down the centre) and (2) a view from the back. The synovial membrane is coloured blue. This shows you the extent of this extremely large membranous organ.

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