TKR Suggestions needed for “tight band” feeling

[Stiff knee NC]

@Jockette: perfect! Thanks! And Tks for link to library. I will say that people who have had a successful MARS MRI always seem to be those w/hip (rather than knee) replacement.

 

[Jamie]

The MARS process helps, but getting meaningful images can still be rather tricky when you have an implant. When there is a concern, it's usually good to give it a try.

 

[Stiff knee NC]

Today is my two-year anniversary of my TKR. No lengthy post. It’s been a long, painful, frustrating two years…and I STILL have tightness, basically unchanged from 3 mo post-op.

I’m very grateful for the continued support and encouragement from Bonesmart staff and members.

 

[hhilltop]

I've been away from BoneSmart for a few years - for better or for worse. I'm replying to a message that Pumpkin seems to have sent Stiff knee NC. It's getting close to ten years since my Right TKR put me through a maze of arthrofibrosis issues.
Bionickneegirl, brentsmith, skigirl, Celle, Pumpkin

I've been getting PRP and ozone injections in my left knee trying to stave off another TKR, but my activity is being limited and the combination of covid and limited activity isn't boding well with trying to get weight off and keep my knee moving.

I've seen the list that Josephine submitted before retiring of arthrofibrosis doctors. I know the other knee doesn't need to be riddled with arthrofibrosis issues, too, but... it makes sense to me to go to a surgeon that does know the ins and outs, to better the chances of no repeats. Unfortunately, none of the doctors on the list are in the New England region.

I did a search on arthrofibrosis and your names surfaced. Have any of you had to have a second knee done after AF affected a prior TKR.

For those of you who are recent AF cases, my heart goes out to you. It's not a fun struggle. I started improving with a PT who said we are going to put you on a take it easy treatment, rather than a lot a hefty workout of stretches. I did get back a good ROM eventually, though not as soon as I'd like it to be. It is and has been my stronger knee for sometime.

Cheers.

 

[skigirl]

I am so sorry to hear about your knee. My adhesions seemed to go to sleep after my surgery to remove them. I did do that horrible 8 weeks with no weight bearing activity afterwards with my PT. He kept saying, they may come back, but at least we know that we did everything that we could do.

it really almost drove me up the wall, but my left knee is still stiffer than my right and has less rom, but it is still with me. I hope you find a doctor near to home so that you can see someone.

 

[hhilltop]

@skigirl

Glad to hear your adhesions aren't still bothering you. Who did your surgery to remove your adhesions? Did you need a replacement of your TKR when that was done? I wonder if I shouldn't get adhesions removed at the same time so do both knees.

So good to hear from you. Thanks.

 

[Stiff knee NC]

@skigirl and @hhilltop: I wish there were a way to know for SURE that I have adhesions/scar tissue. My PT thinks I do. My husband is adamant that I NOT get surgery (“you tried surgery, it didn’t help… why would you EVER consider it again”). There are no specialists on the Bonesmart list in my state (NC). Wont do anything til after the holidays (social events in late fall plus the holidays). I see my new OS Thursday to see what non-surgical things he can suggest for tightness/pain relief.

@skigirl: did anyone recommend putting you on the continuous passive motion machine RIGHT after the surgery to remove the adhesions?

 

[skigirl]

No, my PT went to the opposite direction, he wanted less activity for the first 8 weeks. He thought that moving a hot, swollen knee caused adhesions to form. so, very gentle motion of the knee for the first 8 weeks. After that, we began slowly to exercise the knee---and he felt the knee often!! If it got hot, we went immediately to ice. I really think he was on the right wavelength because my knee has done farely well.

I still hear the velcro ripping noise at times and my kneecap is not very movable, but I do not have a stiff, painful knee. A friend at ski school has struggled with the knee through numerous surgeries and has finally given up. she gets relief after a surgery, but eventually it begins to stiffen up.

For me, my kneecap became held down by extensive adhesions. The doc removed the adhesions and put in a slightly bigger spacer. I do know that my knee had some bleeding for the first day after surgery. I have read that bleeding causes adhesions to form.

This is the most difficult situation to deal with after a replacement. I am not sure that extra surgery would help---but I am not an orthopedic surgeon and if you have a relationship with a person you trust, then perhaps you might try it.

I trusted my PT and he did quite a bit of research before my surgery. My doc told me not to exercise a hot, swollen knee. So Scott and I began a painfully slow rehab. At times, I got so frustrated, but Scott always said---the adhesions may form, but at least we will know that we did what we could.

So, I sat around a lot for 8 weeks. I would do things like clam shells or leg lifts and I would fee the temperature of my knee after each move. I did not weight bearing exercises on the left knee for those first 8 weeks. I did do a lot of pool stuff---water aerobics and some spinning on the bike. But, again, always feeling the knee and if heat developed, I would stop immediately.

Let's see the left knee was in 2009 and the adhesion surgery was in2011 or 12. I have not had a problem since---just lately, I have noticed that my knee cap is not moving very easily. My hips are in bad shape from osteo so I am wondering what effect they are having on my knees.

My doctor has recommended that I get both hips replaced. I am nervous, I am in Minneapolis and away from the docs and PT that I trusted, It is almost impossible to get an appt with a PT here---they are so backed up. I sought an appt in July and have one now for september.

This is a tough problem with no easy solution. I am trying to decide about my hips---the idea that I had severe arthritis in my hips totally blindsided me. I knew that they were stiffer but thought I would have a couple of years to find an ortho and think about surgery. I did meet one nice doc but she does posterior and only one hip at a time. I wonder if I shold even think of having both hips done at the same time at age 77? Yet I also read that that is the only way that they can gaurantee that the legs will be the same length.

I guess if I get both done at the same time, I will have two or three weeks of some immobility, but if my legs are the same length, it will be worth it.!!

 

[skigirl]

@hhilltop Sorry, I started rambling about myself, oops! I actually think that you could have both knees done at once for adhesions. I could walk from day one---walked out of the hospital with no crutches. I am not sure I could stand two rehabs that are that slow.

I lived in Whitefish, MT. had Dr. O, but he retired. My PT was Scott Ruta at Whitefish Physical Therapy. Scott owned the therapy gym and really he is a fabulous PT. If nothing else, it might be worth it to call him and see if he has had any luck with the slow method he used for me. 406-862-9378

 

[Stiff knee NC]

@skigirl: Tks for all the info! I’m headed to the pool but will respond later. I DO hope you get clarity on what, if anything, to do regarding your hips…

 

[Stiff knee NC]

@skigirl and @hhilltop: it’s interesting that your doctor/PT both decided on a much gentler course of recovery (checking for warmth or no weight bearing.) It sounds like that’s the best way to recover from that kind of surgery. I just had a doctor tell me that he’d recommend the COM machine after scar “clean up” so that doesn’t quite sound right!

I had aggressive (extremely painful) and frequent (3x/week for 3 mos) PT post-op. I feel like I did everything wrong the first time and would insist on gentle PT the next go round.

Thanks for the name/number of your PT Scott! I’m going to call him before my thurs appt w/my new OS!

 

[skigirl]

Bonesmart has always recommended a no pain approach to pt and I very much agree.

if your body is telling you no with pain I think you have to listen! Those passive motion machines were big for a while but I think the thinking now is that they are basically useless!

 

[Stiff knee NC]

@Jamie: I went to my new OS for my 2 yr check up AND to discuss ongoing tightness and pain. We did talk about surgery. Here’s what he suggested: “patellar resurfacing polyexchange (this I believe is getting the “button” put in) and a possible conversion to a posterior substituting prosthesis” (I’m not sure what this is… something to do w/ligament? This makes me nervous…I think he suggested this because I have occasional pain at the back of my calf).

We discussed surgery in October. I have a dental appt this Thursday… am wondering if I should cancel the dental appt?

I would appreciate your thoughts. Thanks…

 

[Jamie]

Keep the dental appointment. You want to get any dental work done BEFORE your surgery.

The "patellar resurfacing polyexchange" suggests that you might already have a plastic button that he plans to change out, but maybe I'm misunderstanding. I didn't think you had a patellar button.

The "conversion" to a different type of implant is a revision surgery for your knee. I would assume that you may currently have a cruciate retaining implant and he plans to remove the ligaments and use a type of implant that stabilizes the knee when that's done. If you don't understand exactly why he's suggesting this, please make another appointment with him, write out some questions, and get them answered so you know exactly what will be done and why. It's important that you are comfortable with any revision that is done.

Sometimes when a person has continuing problems with a knee, a revision can fix the problem. But, when you don't have a specific diagnosis of what might be wrong in your knee, there is no guarantee. This is why you need to ask a lot of questions and understand his thought process. It's pretty difficult for us to weigh in on the recommendation as to whether it might help you or not. I certainly hope it will.

 

[Stiff knee NC]

@Jamie: Thanks for your response. I WILL keep my dental appt.

You are correct…I don’t have a button. He suggested the button and conversion at the very end of a long office visit. He indicated that he won’t know for sure what he will do until he gets in there and sees what my knee/implant look like. That seems reasonable. But for now I don’t feel like I know enough about what it is and why he wants to do it to agree to it.

I’m getting a three-phase bone scan in two weeks to see if it shows anything. (My first one, done at 9 months post-op, was fine). I will make an appointment with him to go over the results and, more importantly, have him explain the conversion and why he recommends it.

I won’t be having anything done for at least 4-5 months because of a few events and a holiday visit with a family member. I don’t want to be recuperating during all that. The prospect of another nearly half a year feeling the way I do is pretty discouraging…

 

[Jamie]

I understand about your desire to hold off a bit on any surgery. Your plan makes sense and I think you have a handle on what you need to question the surgeon about. It is true that sometimes the doctor can't really tell what might be going on until they are in the knee. This can especially be the case with continued pain where none of the imaging shows anything wrong. That does happen.

Let us know how you get along and we'll be here to help in any way you need as you work toward making your decision.

 

[Stiff knee NC]

@Jamie: THANKS so much!

 

[Stiff knee NC]

@Jamie: A quick note…my new OS wanted me to get a repeat 3-phase bone scan AND bloodwork. I see him Tues. According to his nurse, there is no sign of loosening but the scan shows “degradation” of the bone. Re the bloodwork, my C-reactive protein is 22 (previous was 3)…normal range is 0-10. And Sed rate is 17 (previous was 15)…normal range is 0-40. How would you interpret that….that I have an inflammation? Can it be treated w/medication?

He’s pretty adamant I don’t have a nickel reaction even tho that lymphocyte assay test came back high for nickel.

 

[Jamie]

I'm not really in a position to interpret those test results, but the change in the C-reactive protein levels would be something you should try to get an answer for. I can understand why he might want a repeat of the tests to see if the levels remain the same. I would ask what "degradation" of the bone means in your case. Is it an overall loss of bone density or something related to the area around your implant? If there is bone loss around your implant, that could indicate loosening of the prosthesis.

"Inflammation" isn't treated with medications. You have to get to the bottom of what might be causing inflammation. Is it that you need a patellar button to make your patella track properly? Is the implant infected? Are soft tissues inflamed from too much activity too soon? There are a lot of reasons a person might have "inflammation" going on. You have to find the reason for the inflammation and treat that.

Make a list of your questions and concerns before your appointment so you don't forget anything.

 

[Stiff knee NC]

@Jamie: thanks, as always, for your feedback and question suggestions. I’ve been saying for 2 years that something’s not right in there and I know it sounds odd, but I was actually somewhat relieved that a test showed something. Now to see what that something could be and what he/I can do about it.