TKR Valentines group

[Sasysusie]

Hi all its me Sasysusie. I realize I feel off the mark back in 2013... During my recovery from total knee replacement my dad was diagnosed with brain cancer. My life never was the same from that point on. I abandoned all my support here but needed to deal with things at hand at the moment. I went and lived for 8 months with my mom and dad to help my mom care for dad until he passed. So anyway I disappeared from here rather abruptly.. It makes me sad I had such a great support group here and made some nice friends here.. You all helped me so much.

It been 3 years now and for 2½ of them actually the knee was doing very good. I'm not sure I ever really got all the range of motion I wanted but I had plenty. I could walk good I could do stairs and basically I was happy with all my progress and glad I got the knee replaced!! Then out of nowhere at about 2½ years out from the surgery something went wrong!!

One day out of nowhere I got swelling and I mean big swelling. It started first mostly on the right side of my knee, made the knee actually look deformed. Then the swelling increased to over the entire knee. It seems more of the swelling is right side and over the whole top of the knee. The swelling even will go down into my calf when it gets really bad. The more I'm on it and up and about, the more swelling I get. I can control it to a certain degree by not being on it but come on that is not what I want. I got the replacement so I could be active and live my life like I am, busy and active. This has really impacted me.

There is always heat in my knee. I first went to the Dr and they put me on antibiotics. That really didn't seem to make a big difference. I had an xray and the replacement itself looks to be intact. I also had a CT scan of the knee and nothing showed abnormal in that. Tt's been 5 months and there has been no change.

I use it and the swelling gets so bad and as the swelling gets worse so does the pain!! When the swelling gets so bad I have so much pain and along with that it's so hard to bend my knee then so I walk terribly when it's more swollen. It's been on and on.

I am now scheduled for a 3rd bone scan on the 21st. During the middle of all this I had to make an insurance change which just held everything up even more.. ugh. This last week I had some blood work done that showed elevated levels in my WBC and my RBC... don't know what any of it means. I'm wondering if any others have had a similar experience as this? Help!!

This was one place I knew I could reach out too. Hugs all and sorry I dropped off the face of this site for thee years, circumstances just dictated that!!

hugs
Susie

 

[Jaycey]

Welcome back @Sasysusie ! So sorry to hear the news about your Dad. I totally understand your need to prioritise time with your parents.

I'm going to tag @Josephine to comment on your blood work and this swelling. Does icing and elevating ease any of this swelling?

 

[Pumpkin]

Sasysusie,
Sorry to hear you are having problems. Suggest you get a second opinion about your knee, seek out a surgeon who specializes in revisions, they have the experience to determine what is going on with your knee. You can use the find a clinic button at the top of the page to locate someone in your area. Most of the web sites will list if there is someone who specializes in revisions or complex joint reconstruction.
Hope you find some answers soon,

 

[Josephine]

I have some ideas about this but first I need some details: I'd like to ask you some questions if you don't mind, and it would be very helpful if you would answer each one individually - numbered as I have done - in as much detail as you can then I'll come back as see where you are ....

1. what are your pain levels right now? (remember the 1-10 scale: 1 = no pain and 10 = the worst you can imagine. And don't compare this with the bone-on-bone pain you had before surgery! ) Also don't forget to include other forms of pain such as soreness, burning, stabbing, throbbing, aching, swelling and stiffness

2. are you taking any pain medications? If so, what, how much are you taking (in mg please) and how often?

3. do you ever have a fever?

4. are you icing your knee at all and if so, how often and for how long?

5. are you elevating your leg, how often and for how long?

6. What is your ROM - that's flexion (bend) and extension (straightness)

7. how swollen is your leg?

8. are you doing any exercises? If so, what, how much and how often?

These are examples of how I'd like you to describe them ....

Exercises done at home: 3 sessions a day
Heel slides x10 (reps)
Straight leg raises x10
Steps x10

At PT
Squats x5 (reps) x2 (sets)
Wall slides x5 x2
Clamshells X5 x2


Can you also tell me the exact site of your pain using this chart?
Please note the instructions in the smaller image

 

[Sasysusie]

Hi Josephine,
1. Right now pain level is low I'd say a 3 but the pain level. The pain increases as I'm on it more. As the swelling goes up so does the pain level.
2. No I do not take pain meds. I am on Eliquis a blood thinner I take for Atrial Fib.
3. No fever and blood tests are not showing elevated numbers right now
4.over the last 5 months I've been dealing with this I have done a lot of icing. I would ice for about 20 mins at a time and some days more frequently than other almost always 3 times a day. Lately I have not been icing very much but there really is no difference when I do and do not. Mostly the ice helps the pain.
5. I elevate the leg when it's possible. Actually if you mean elevating the leg above the head. I've not done that. Sitting with it up I do. About 3 times a day. When I can for about an hour at a time. Some days I try to just stay off it if I had a lot of swelling and pain the day before. All depends on my life's schedule.
6. I do not know my numbers. I know I can sit on the floor and completely extend my leg flat. My rom depends on the swelling. When it's very swollen the rom is not good. But at its best I never had it measured. As long as I was walking normal, doing stairs normal I didn't even worry about the ROM.
7. First thing in the morning at say it's above slight but not as big as moderate. After a little use it goes to moderate quickly. On days I'm on my legs all day and busy it gets well above moderate but not quite huge but close. The swelling always starts on the top right, almost like a deforming look. Then the swelling spreads out with use but biggest bulge is always on the upper right
8. I am not doing exercise
9. Front according to the chart is CRF1 bottom end of that. I also get some pain at DRF2 bottom side of that but the big bulge swelling starts at front CRF1

I am now at 3 years out and this has been going on since the end of August 2015.
Thank you

 

[Josephine]

Front according to the chart is CRF1 bottom end of that. I also get some pain at DRF2 bottom side of that but the big bulge swelling starts at front CRF1

Like this?

Those site would suggest
Red: ITB (ilio-tibial band) issues
Green circle: an excess of swelling and maybe even bursitis. Baker's cysts and other knee bursae
Blue: could be a number of structures involved here - Pes Anserine and MPFL pain

1. Right now pain level is low I'd say a 3 but the pain level. The pain increases as I'm on it more. As the swelling goes up so does the pain level.
2. No I do not take pain meds.

If your pain goes above 3, why aren't you at least taking Tylenol (or paracetamol - sorry, I don't know your country!) At that rate, it needs something. So read this article so see how swelling and pain are very interlinked. Pain management: importance of managing pain after a TKR and the pain chart

3. No fever and blood tests are not showing elevated numbers right now

Good.

4.over the last 5 months I've been dealing with this I have done a lot of icing. I would ice for about 20 mins at a time and some days more frequently than other almost always 3 times a day. Lately I have not been icing very much but there really is no difference when I do and do not. Mostly the ice helps the pain.

You actually accomplish little or nothing in 20 minutes and that would probably be the reason it doesn't appear to be doing anything. If you're going to ice, do it for at least 40-60mins and remember that ice isn't only for swelling, it's nature's good pain killer too!

5. I elevate the leg when it's possible. Actually if you mean elevating the leg above the head. I've not done that. Sitting with it up I do. About 3 times a day. When I can for about an hour at a time. Some days I try to just stay off it if I had a lot of swelling and pain the day before. All depends on my life's schedule.

No I didn't necessarily mean 'toes above nose'! But you do seem to have a pretty good pattern here.

6. I do not know my numbers. I know I can sit on the floor and completely extend my leg flat. My ROM depends on the swelling. When it's very swollen the ROM is not good. But at its best I never had it measured. As long as I was walking normal, doing stairs normal I didn't even worry about the ROM.

That's okay. But yes, swelling will influence the ROM. It's bound to.

7. First thing in the morning at say it's above slight but not as big as moderate. After a little use it goes to moderate quickly. On days I'm on my legs all day and busy it gets well above moderate but not quite huge but close. The swelling always starts on the top right, almost like a deforming look. Then the swelling spreads out with use but biggest bulge is always on the upper right

Sounds to me like you might have some lymphedema. Perhaps a lymphatic drainage massage therapist would help you here.

8. I am not doing exercise

I'm very pleased to hear it!

It seems to me you have a pattern of chronic swelling or even lymphedema and that can be pernicious. Apart from the massage therapist I mentioned earlier, you could possible benefit from some medical grade support hose. I do wish I knew which country you are in so I could further advise you.

 

[Sasysusie]

I am in the United States..

I am scheduled for a 3 bone scan on Tuesday coming up. you did pretty much nail the spots.. The red dot is where most of my swelling originates. Can you have a Baker's cyst even with a total knee replacement, ugh!

The blue dot you indicted is not an area I'm having the swelling issues with but I'm having serious pain issues there! My doctor is trying to find out the source for it all hence the 3 bone scan coming on Tuesday. He did do an ultra sound on it yesterday and it looked to him like fluid. But once he tried taking some out for a sample to have analyzed what he got out was blood which makes him go back to an original thought that it might have something to do with the blood thinners I take for Atrial Fib. A very slow leak that has produced a hematoma.

All I know is I'm uncomfortable and the pain on lower inside worries me too. I want to be able to be more active which is why I had the hip replaced and then the knee replaced.
They have talked about me having an A typical rheumatoid arthritis and I wonder if that plays into it all.

You mentioned lymphedema, I am not sure what that is.

Is this common at all? Are there others out there like me with issues like this?

Thank you always for your time with me...

Is this out on the public forum so others that could be dealing with this can chat with me too? It's always nice to know when you're not alone
Thank you
Susie

 

[Josephine]

Can you have a Baker's cyst even with a total knee replacement, ugh!

Yes, it is possible but uncommon. But yours is not a Baker's cyst as that bursa is right at the back of the knee. However, there are several other bursae that could be responsible.

Blood, hmm? That's puzzling.

You mentioned lymphedema, I am not sure what that is.

I did say what it is

It seems to me you have a pattern of chronic swelling or even lymphedema and that can be pernicious.

But here's another definition -
Lymphedema, lymphoedema, or lymphatic obstruction is a chronic (long-term) condition in which excess fluid (lymph) collects in tissues causing edema (swelling). Lymphedema can be very debilitating. In short, lymphedema is edema due to lymphatic fluid; a blockage of the lymphatic system.10 Sep 2014

Is this out on the public forum so others that could be dealing with this can chat with me too?

Indeed it is!

 

[Sasysusie]

well sounds like I do not want to have Lymphedema Hopefully the 3 bone scan shows something. I was doing great until one day 5 months ago now it all turned!! sadness!! I was always complementing myself on how well I walked and did stairs and no pain... that's what I get for bragging!!

 

[Josephine]

Lymphoedema's not that bad and as I said, it can easily be remedied by a good lymphatic draining massage therapist. I got a bout of it earlier this year and had a few visits from a nice young lady who worked minor miracles and now it's pretty much gone. I think she only called about 8 times in all. This kind of condition won't show on a scan though.

 

[Sasysusie]

I am curious how many have had to have a re-replacement. I was just old that is what I need after only 3 years with this knee... ugh... how common is that. Apparently the one I have shifted ... does that really happen or just to me?? would love to hear from some of you
Susie

 

[Pumpkin]

Sorry you may be facing a revision, I had one for flexion instability. Are they saying you implant has become loose?
Suggest you seek a second opinion from a surgeon specializing in revisions, that has no association with your present surgeon. They have the experience to determine what is going on with your knee. You can use the find a surgeon button at the top of the page.
Revisions: what makes them necessary?
If you click on a yellow revision banner on the Knee Replacement Recovery forum a list of members with revisions will pop up.

 

[skigirl]

It is very unusual to be facing a replacement after 3 years. I hope you are not going back to the original surgeon---I would not trust him to do a good job if he made a mistake with the first knee.

Chris gave you good advice---find someone who does a lot of revisions and have them look at your knee.

 

[Dabber]

I had a revision 2 weeks ago, my primary was done in May 2013. My knee was lax and unstable. My clips come out today. Revision surgery isn't news you want to hear but as mentioned, choose your surgeon carefully.


Sent from my iPad using BoneSmart®

 

[Josephine]

No it's not unusual. It does happen to people at varying times from a few months to many years.
It's actually the most common reason for a revision.

 

[Josephine]

@Sasysusie, I merged your threads as per this request One thread for your recovery please?

It is so much easier to be able to help you and give you the advice you need when we are able to easily see when your surgery was, what other issues you may have had, and what has been going on in your recovery just by looking at one thread instead of bouncing back and forth between two or more other threads.

We also have help articles here, you know! In here How To Use This Forum (it's in the "Help & Info" tab across the top of the page).
The article you want is this one How can I find my threads and posts?

 

[Sasysusie]

I see im being cautioned about my surgeon... This TKR was fine for almost 3 years.. I was moving fine, walking with a good strong gait and doing stairs fine, I had no complaints, this all seemed to happen very suddenly. I have been told my replacement shifted, I do not know the reason for that. Is that really the surgeons fault. If it was something he did would I not have had problems long before now?

 

[Josephine]

For 'shifted' read loose. And yes, if the cement bone bone broke down, then the responsibility for that lies with your surgeon who apparently failed to get a good seating when he inserted the bone cement. Even a loosening after 3 years would be that. I'm not saying he was careless but he was ultimately responsible. There's not a knee surgeon living who hasn't had a patient develop a loosening not matter how good he is. But some do get more than usual and those are the ones to be avoided. Given your knee held out for 3 years, I'd say he was just unlucky (and you, of course!).

 

[Sasysusie]

Im trying the find the group of us that all had knee replacement in February... where did they all go
Sasysusie

 

[Celle]

Hi @Sasysusie
You'll notice that I have merged your newest thread with your original recovery thread. This is the second time that your threads have had to be merged. Please don't keep starting new threads.

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.
• Having to merge threads makes extra work for staff.

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. Between the staff, we read all the new posts every day, so s new post in your thread will not be missed.

If you need an urgent response to a question, just tag a member of staff.
How to tag another member; how to answer when someone tags you

Here are the instructions on finding your thread, How can I find my threads and posts? . Many members bookmark their thread, so they can find it when they log on.