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TKR Suggestions needed for “tight band” feeling

@Jamie: Hope you are doing well! I will post a longer message next week on my 18-month date... but just wondered...when people complain of “tightness,” (like I have for 18 months) what are the possible causes that I can talk to doctors about/get tested for? I went to a rheumatologist yesterday to see if I had some overall problem (because I have 2 bad knees, 2 torn rotators, and occasional tennis elbow). He did not think I had an overall problem... and was mystified about my ongoing tightness. He talked at length about getting an MRI—something that my surgeon said would be useless because the metal inside would just show one big bright spot. Is there a certain KIND of MRI machine that would be better for me? I’ve had all kinds of tests and nothing has been conclusive. Tks in advance...
 
Pumpkln is correct. It is possible to have an MRI and sometimes problems can be identified that way.

You mention you have two bad knees, so I'm assuming you still need another TKR on your other knee, right? It's possible, if that knee is causing you problems with your gait, it may be contributing to the issues you're having with your TKR knee. Are you planning to get the second knee done?
 
@Jamie: Thanks for responding! My right knee has had two meniscus surgeries (2010 and 2015). It hurts but it is on and off and nowhere near as bad as my left was/is and, as you can imagine, I’m in no hurry to get a replacement on it. Honestly, my left shoulder is probably what needs done. I could get a cortisone shot but I’ve already had a few and according to my surgeon, they can begin to break down the tissue. I don’t think my right knee is contributing to the problem w/my left...in fact, I think my gait is a lot better now than it was a year ago. It’s just this aggravating tightness, which the nerve ablation seemed to help mask but then I started walking and it’s as obvious as ever.
 
Hi. I am at day 106, ( but who's counting.) I still have tightness in my knee. It's less than it was, but increases as the day goes by. I do find that icing helps. Good luck in your recovery.
 
@TKRsharon: Good luck with your recuperation! I’m at what? nearly 500 days out and STILL dealing with tightness. Nobody can figure out WHAT is causing it. Frustrating! I DO ice it when it’s gets to be really painful. We’ll see what the MRI shows!
 
@Stiff knee NC I'm very curious to hear about your MRI and if it shows anything. Like you, I'm still having a lot of stiffness and it's been over 18 months! I go see my OS in March and was considering bringing up the possibility of an MRI. X-Rays just show that the implant is in good shape and no one can help me figure out how to improve my flexibility. I refuse to believe this is just as good as it will get. I feel like I've tried everything I can think of and no changes! I'm also still dealing with extreme nerve sensitivity and pain, which is another annoying complication. I hope the MRI gives you some answers!
 
@Steelergal: I haven’t made the appointment yet... I just hate spending that big chunk of money for a test I’m not sure will tell me anything (like my pricey bone scan did, as well as the nerve ablation). I will post my results as soon as I get them from the MRI! (Btw my husband is from Pittsburgh!)
 
Well, today is my 18-month anniversary. What a difficult journey.The tightness that has bedeviled me since the beginning persists. I’d thought that the nerve ablation done mid-December was the answer but, once I tried walking for exercise (a little over a mile 2 days/week) it became as noticeable as before.

I want a simple answer to: what is causing my tightness? And what can be done to correct it?

I’ve tried (for those struggling with the same problem): therapeutic massages, taping, acupuncture, PT, compression sleeves (still use these). Have had a bone scan, an expensive blood test that showed a nickel allergy, a skin patch test which showed no nickel allergy but an irritation to venadium, a nerve block and a nerve ablation, in addition to trying various creams (Voltarin, an expensive compounded cream, and Arnicare), and various meds (Gabapentin, Lyrica, Topiramate). Absolutely NOTHING has made any difference.

I was set to get an MRI but it will be a staggering $1,600. I can’t justify spending that on another test that will in all likelihood show nothing.

I will go see a different pain specialist to see if he can recommend something new.

If there’s ANYTHING besides “learn to live with it” (my surgeon’s parting words at the end of my one-year visit) that you can recommend, I’d be grateful to hear about it. Thanks to all my fellow Bonesmarties and, especially, the forum advisors, for your encouragement and advice over the past 18 months. I’m quite sure I couldn’t have gotten this far without your help.

Be well and prayers for all of you as you continue to recover and heal!
 
I didn’t reply the other day because you specifically said other than learn to live with it, and I don’t have any suggestions for you as far as tests or treatments.

There hasn’t been a solution for me, but, over time I have seen improvement, as my whole leg continued to relax and heal. I was miserable at 18 months and as frustrated as you are. By the end of my second year things were better, and I even saw some more improvement in my third year. I finally got to a point where I accepted what I have, and moved on (mostly, though I still have my frustrated times, especially when I read about those with exceptionally great recoveries and no pain. I mean, isn’t that what we all expect the outcome to be?)

It will be 4 years in March since my partial and I’m still not happy with my results. I hope, though, at some point you will see improvement like I‘ve seen, which has helped me get to a point where I can live with it.
 
Jockette said:
I didn’t reply the other day because you specifically said other than learn to live with it, and I don’t have any suggestions for you as far as tests or treatments.

There hasn’t been a solution for me, but, over time I have seen improvement, as my whole leg continued to relax and heal. I was miserable at 18 months and as frustrated as you are. By the end of my second year things were better, and I even saw some more improvement in my third year. I finally got to a point where I accepted what I have, and moved on (mostly, though I still have my frustrated times, especially when I read about those with exceptionally great recoveries and no pain. I mean, isn’t that what we all expect the outcome to be?)

It will be 4 years in March since my partial and I’m still not happy with my results. I hope, though, at some point you will see improvement like I‘ve seen, which has helped me get to a point where I can live with it.
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I, too, have learned just to live with it! Been over 3 years since my RTKR, and while I don't have constant pain, there still is pain. Actually, after having my LTKR in July 2020, both knees feel the same...tightness around the knee, skin sensitivity, etc. Like you, I realize I'm not one of the lucky painless success stories and just need to plan my life accordingly.
 
@Jockette and @Dizzy: thanks for responding. I appreciate your comments, perspective, and encouragement! Have either of you pursued any pain relief (nerve block or ablation or something else) that proved useful?

I’m struggling with accepting that I’m one of the unlucky 20% who aren’t happy with the results... I did EVERYTHING I was told to do and followed my post-op instructions to the letter. I do think overly aggressive PT contributed to my problem...

I will continue to hope and pray for healing for my left replaced knee AND that my right knee stays relatively pain free so I won’t be faced with whether to replace my right knee!
 
I don't know of any tests to be done. The only thing I would have to offer is to keep trying different surgeons for opinions. Sometimes these problems cannot be seen on tests and imaging. If you could find a surgeon who works with arthrofibrosis patients, that might be helpful. I'm sorry....I wish I had the magic cure for you. Sometimes it does resolve with time, lots and lots of time.
 
The only thing I have pursued was 2 second opinions, 8 months apart, in 2 different states, so they wouldn’t know each other. Neither found anything to fix, though they didn’t look very hard. The first at 15 months post op, and the second one just before the 2 year anniversary.

My recovery my whole first year was difficult. My PTs caused me a lot of pain. My surgeon caused me a lot of pain at check ups, trying to get the best ROM he could get, which made me not want anyone else to touch my leg. At all. I wasn’t offered any treatments, and to be honest, I didn’t want any more intrusions into my leg anyway. My husband had the nerve ablation on his lower back which did nothing for him, other than cause him temporary increased pain from the procedure, so I didnt want to try that, not that anyone offered.

As long as I’m wearing shorts, in warm weather, my knee doesn’t hardly bother me, in general. It is still very sensitive to any angle it doesn’t like, like when I lean forward, loading the lower shelf of the dishwasher, making the bed, etc. even while wearing shorts.

Wearing pants is a whole different story. The absolute second I put pants on, it still feels like someone has jammed a pole into the side of my knee, and left it there. It’s not incision sensitivity, it’s deep inside. Right about where my surgeon also did a lateral release during my replacement surgery. I wonder if I might have a damaged nerve. I still have to poof up the quilt in bed so it’s not totally laying on my knee. I still have to sleep with my legs up on my foam wedge, because my knee is still very uncomfortable if I lay on my side. My knee often feels out of place. Thankfully, elevating my legs all night seems to reset it to its happier place.

My knee still aches in cold weather. I keep the temperature of my home way warmer than most people, so I can wear shorts, at least at home, all winter.

So, I try my best to keep my knee happy, and just tolerate it when I can’t. While I’m not happy with my knee, I dread the day I’ll need a revision.

I think I’ll copy this post and put an update in my own thread, I haven’t done that in a while.
 
Stiff knee NC said:
@Jockette and @Dizzy: thanks for responding. I appreciate your comments, perspective, and encouragement! Have either of you pursued any pain relief (nerve block or ablation or something else) that proved useful?

I’m struggling with accepting that I’m one of the unlucky 20% who aren’t happy with the results... I did EVERYTHING I was told to do and followed my post-op instructions to the letter. I do think overly aggressive PT contributed to my problem...

I will continue to hope and pray for healing for my left replaced knee AND that my right knee stays relatively pain free so I won’t be faced with whether to replace my right knee!
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No...I have not tried any pain relief actions. Frankly, I just don't want to "fuss" any more with them. I'm able to function in my daily life in spite of the discomfort. I'm not walking "10,000 steps" nor running any marathons, and that's fine by me. I am able to do the things that are important to me so I am resigned to the fact that this is how it's going to be.
 
@Jamie: saw another doctor for additional suggestions. He focused on: the blood test showing a high nickel allergy (can’t do anything about this unless I get a revision and a ceramic implant). Current implant looks completely fine in multiple x-rays. 2. That tightness is likely from scar tissue (he was concerned that I can’t fully straighten my leg...I’m at about -5... which is definitely worse than a year ago.) Are you aware of ANY non-surgical solutions to scar tissue? We talked about massages and PT, will do both. He ordered repeat labs and a repeat three-phase bone scan to check for inflammation. I will say my knee gets much “tighter” after exercise, which makes me think it’s scar tissue. Will scar tissue “lessen” over time? Would a manipulation break up scar tissue? He ruled out cortisone shots. I’m starting to feel desperate again... Tks in advance for your feedback.
 
I am sorry to hear the blood work showed a nickel allergy - that could be at the root of your issues. This is a really random idea, but if you could find a good homeopathic doctor, they might be able to help partially desensitize you to nickel. We have one out here who was able to find a very arcane allergy one of my daughters developed that allergists and a host of other doctors had not discovered - she learned she could no longer eat pork products (after losing 30 lbs she couldn't afford to lose)! But he was able to help reduce her response to it if accidentally ingested. Truly, I don't know if it can be done, but it might at least be worth a phone call. I am neither a doctor nor do I play one on TV!

And I would try some massage therapy to help with the scar tissue. Good luck!
 
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