PKR JusticeRider’s rehab adventure

[JusticeRider]

Thank you all so much for the encouragement! It’s wonderful to have a little community who totally get it to celebrate progress with! I’m afraid some of my friends might think ‘wow, so, you’re doing good over a year after a surgery, big deal’. But I think you all realize what a long difficult journey this has been. @CatieViv , I’m so happy if my story could be helpful to you! I can’t believe you made it through the whole thing! I will be reading your thread with interest and rooting for you
And as long as I’m seeing major changes as relates to my knee and surgeries, I’m planning to keep posting a monthly update. Healing thoughts and encouragement to all the new and recovering knees out there!!

 

[sistersinhim]

We love to hear your updates, @JusticeRider! Please keep them coming. They are very helpful to others coming up behind you.

 

[dotski]

@JusticeRider your story is no doubt so helpful to many! Appreciate reading it again. I was hoping to ask you a couple questions? Did you ever experience crepitus and/or a velcro-ripping noise in your kneecap joint when extending the knee? And if so did it hurt? And did your OS put in a patella button and/or resurface your kneecap? If you’d rather not answer here, feel free to pm me (I’m not sure how to start a pm). Thanks!

 

[JusticeRider]

Hi @dotski! The crepitus, yes. Pre surgery for many years my knees would crunch, crack, pop, click. My right one still does but the left is quiet now! My right one will crack loudly if I have it bent for a while and then straighten it. And yes, I have a patella button on the left PKR knee. They took the cartilage and a bit of the bone from the patella and put on the plastic button. They did the same to the trochlea (femur groove) and covered it with metal. So no more crunchy stuff!

Oh, you also asked if the crepitus was painful. Yes, sometimes. Usually just uncomfortable or annoying. After the injuries in 2020 though, the crepitus was super painful in the left knee. Absolutely awful. Are you having pain and crunching in your knee? Is this your replaced knee or the non op knee? Did you have your patella resurfaced in your TKR?

 

[dotski]

Thank you for replying! Yes it’s my new knee TKR having crepitus. The patella wasn’t resurfaced as surgeon decided intra-op not to. My other knee sounds the same.
I hope your right knee (and of course left) holds out for a long time for you! Sounds like you can do a lot with both so I’m sure they will.
I’m right with you on the pre-op crepitus and pain - one reason I went through this TKR as arthritis was stopping me from doing the things I loved such as xc skiing and hiking (just when my kids finally started liking hiking mountains…and then I couldn’t do it with them). Leaning so hard on poles was hurting my wrists.

I don’t want to hijack your thread with my woes! But I had asked because much of your story resonates with what I’m going through (inflammation, etc). My operated knee (a bit over 2 months) has now developed some crackling (snap crackle pop ain’t just for Rice Crispies!) around and under my kneecap that is very similar to arthritis crepitus…very different from the clunking and clicking stuff that I have in other parts of my new knee that I assume to be normal. This crepitus when going from bent to straight is pretty unpleasant and knee will hurt and swell more after any exercises that moves it through a fuller ROM (and hence have backed off and am only working in a limited amount of ROM that doesn’t hurt). Long arc quads hurt the most, stairs, etc (so I’m still one at a time or leaning heavily on a railing and cane). I too think I have some autoimmune stuff that makes my tissues overreactive. And I’m naturally worried about arthrofibrosis and trying to figure out when I will be able to go back to work and other practicalities.

So basically I had been hoping that maybe your operated knee had some crepitus at around this time and that it eventually resolved…giving me hope that in time it might improve without needing a scope to free up the adhesions. Hope you are having a great weekend.

 

[JusticeRider]

one reason I went through this TKR as arthritis was stopping me from doing the things I loved such as xc skiing and hiking (just when my kids finally started liking hiking mountains…and then I couldn’t do it with them). Leaning so hard on poles was hurting my wrists.

That is so hard. I don’t know about you, but going for outdoor adventures makes me feel alive! And then just as your kids were ready to join you…ugh. But hopefully by next fall you will be up in those mountains with them!

My operated knee (a bit over 2 months) has now developed some crackling (snap crackle pop ain’t just for Rice Crispies!) around and under my kneecap that is very similar to arthritis crepitus…very different from the clunking and clicking stuff that I have in other parts of my new knee that I assume to be normal

You are so early on, especially if you have a lot of swelling! My knee was so angry at that stage. I could barely do anything. Weird things happen from swelling and from your whole body trying to figure out this brand new part. It’s scary, I know, when it feels like ‘before’ and you think, ‘is it even fixed??’ But things are so mixed up in that early stage.

Also, sometime around 9 months, I developed a weird little pop in my PKR knee. It wasn’t audible at all, I could just feel it as I moved in and out of my full ROM (for that time). It was disturbing, but my PT said it was because I was in an ROM range I hadn’t had for a long time and it was likely a tight tendon sliding across my new knee. It slowly phased out for the most part, although I sometimes feel a really subtle version of it if I’ve been overdoing it OR too sedentary for a while. I decided not to worry about it! Of course it’s not painful and yours is. But for me, at your stage, EVERYTHING was painful.

and knee will hurt and swell more after any exercises that moves it through a fuller ROM (and hence have backed off and am only working in a limited amount of ROM that doesn’t hurt). Long arc quads hurt the most, stairs, etc (so I’m still one at a time or leaning heavily on a railing and cane). I too think I have some autoimmune stuff that makes

Yeah, your knee is talking to you. Maybe don’t do those exercises for a bit until things settle down a little more. I think you’re wise to only move within ROM that doesn’t hurt. Especially if you have a strong inflammatory response, irritating it will be counterproductive. As for stairs, I think it took me till like month 5 or 6 to go up normally and until like 8 months to go down? Don’t worry about stairs yet, just listen to your knee! It will tell you when it’s ready.

Sorry for such a long response, but I just want reassure you. The first few months can be really hard. Take your time, trust your body, and be gentle with yourself. Try to roll with all the weird stuff that may come and go. And when you’re spinning out, people here are the BEST to talk to

 

[EalingGran]

think it took me till like month 5 or 6 to go up normally and until like 8 months to go down? Don’t worry about stairs yet, just listen to your knee! It will tell you when it’s ready.

That was my experience as well. Stairs was one of the last things to normalise for me. Not helped by having so many to deal with...
I still have some fairly dramatic sounding crepitus at times although it is not painful at all unless I go right down on my haunches. I still have my old femoro patellar compartment and my surgeon doesn't worry about noisy crepitus so long as isn't really painful. He says he has it too!

 

[CatieViv]

The first few months can be really hard. Take your time, trust your body, and be gentle with yourself. Try to roll with all the weird stuff that may come and go. And when you’re spinning out, people here are the BEST to talk to

Thanks for the reminder to be gentle on this poor confused body! I totally agree that people here are the best to talk to!

 

[dotski]

@JusticeRider thank you so much for a thoughtful and helpful reply! Again, didn’t want to hijack your thread, so hopefully the questions help others reading through your journey to see little tidbits of other related journeys. Loved hearing of your adventures on the other side now.

 

[JusticeRider]

Planning to leave a monthly update in a few days (16 months!! Whaaaat?) but in a bit of a rough patch at the moment. Daylight savings time change threw my usually well-managed bipolar disorder off the rails and I struggled with some nasty depression for a few weeks. Then my husband and I both got Covid (yuck!) Our first time, so congrats to us haha.

Right around the same time my favorite nephew, who is hypermobile like me, dislocated his knee. He was doing a training exercise on his Navy ship that involved grappling. Kind of like wrestling. Anyway, the much larger guy he was matched with fell hard onto my nephew’s knee from the outside and it dislocated. The ship’s medic had a lot of trouble getting it back in and my (big, grownup) little guy was in so much pain! They finally got it back in and then put it in a brace. They didn’t have him ice or elevate or any other kind of care, not even NSAIDs, just had him walking around in a brace and trying to do normal things. Meanwhile, his knee was incredibly swollen and painful. He didn’t want to say anything because he’s supposed to be a tough soldier and not complain.

Fortunately, they got back to the mainland, because shortly after, he began to have chest pains, shortness of breath, etc. He thought he was having a heart attack. Long story short, he has a pulmonary embolism! He has been in the hospital for a few days now. He seems to be through the worst of it, but we have all been so worried for him!

AND his poor knee is still a swollen painful mess and they still haven’t done anything for it. My sister flew down there, and she has been pushing for them to do an MRI but so far, nothing. They got cranky about being asked to bring him ice. I just feel so bad for him! I know what it’s like to have an extremely painful knee and have everyone around you minimizing it. Add that to having a life threatening blood clot in your lung…I can’t even imagine!

Anyway. Apologies. I know this doesn’t relate to my knee. I went to leave an update but just can’t seem to think about anything else right now. Please send positive thoughts, prayers, good vibes, etc his way if you think of it.

 

[EalingGran]

Don't apologise! That's one heck of a lot going on. It's so hard seeing those we love suffering and their being grown up doesn't help- in fact it makes it harder as there is often less we can do to just make it better.
So sorry you are having a really rough patch too. I know how the dark miserable days can really impact on mood. It can be very grey here too in London if the sun isn't out- and the really short days can easily feel oppressive. I had a friend who tried a light box as it seemed she had a seasonal aspect to her bipolar disorder and she thought it really helped.
Just hope things start to improve for your nephew and you feel better soon. We will soon be at the Winter solstice and after that every day will getter longer and hopefully brighter!! Good luck!

 

[JusticeRider]

Thank you @EalingGran Up coughing now and trying to distract myself! It’s hard having my nephew so far away. Even if I didn’t have Covid I couldn’t just go to the hospital and visit him and give him a hug and see him face to face. It’s so scary to think he almost died. He has a ‘saddle’ embolism, which means it was blocking off the entrance to both lungs. After doing some research, it seems likely that his knee injury may have caused a blood cot in his leg that traveled to his lungs. I can’t help but think that if they had treated his knee differently, this could have been avoided. Perhaps not, but I’m feeling protective. He’s only 24, and a very young 24 at that.

 

[benne68]

HugsOh my goodness, @JusticeRider! So much at once.

Everything affects our knees so feel free ro share whatever you’re dealing with!

Sending hugs!

 

[CatieViv]

Big hugs to you my friend. So sorry to hear that you and your husband have COVID. I know how awful it is. Added to that the worry about your nephew, no wonder you are down. Sending prayers your way. I pray for your nephew and your sister too.

I would love to send you some sunshine but it's snowing! So instead, I send the biggest hugs I can. And a picture of our apple tree in blossom last spring.

 

[sistersinhim]

Oh no, JC, it sounds like everything is hitting you at once. I pray for you and your husband's quick healing from Covid.

Your poor nephew. No wonder you are concerned. This is a very scary situation. I pray for his quick healing. Please let us know.

We at Bonesmart are like a family and we all care when one of our members is going through what your family is going through. We wrap our arms around you.

 

[JusticeRider]

Thanks all for the love and support. It means so much Rough night last night with the coughing but got an update this am from my sister, and nephew is hanging in there, trying to be brave. She’s been trying to advocate for him and no one will give them any answers or run the tests that were recommended. So she’s been on the phone all morning trying to get somewhere. I know lots of people here on BS can sympathize with getting the run around from medical professionals and the ‘system’. I’m so glad she’s there for him and fighting on his behalf. I hope they make some progress asap…he’s still having trouble with his breathing and can’t walk without severe pain in his knee.

 

[djklaugh]

@JusticeRider I am so sorry to hear about the difficulties your nephew is having getting his medical problems treated! Is he at a military hospital? If yes some buzz words/phrases your sister should be using are "he was at sea on deployment when knee injury occurred" and "service connected injury". If she is still getting resistance about getting proper evaluation and treatment she can try insisting on seeing the head of orthopedics for that facility. If he is at a civilian hospital ... they may be having trouble with "who pays for this" if they are trying to get compensation from the military health care system. Sigh it should NOT be this way for any military personnel active duty or veteran, but alas it too often is. My son is retired career Navy and avoids the VA system -- fortunately he has good private insurance now.

And yeah the "stiff upper lip, I'm a tough soldier" bit ... I've seen that too. It is the military mentality. But if that knee injury goes along with inadequate treatment he could be looking a permanent disability.

Sending up prayers for his well being!

 

[mendogal]

Just catching up and OMG what a sad tale. Sending heartfelt virtual hugs to you and yours.

 

[JusticeRider]

Thank you @mendogal, @djklaugh, @sistersinhim, @CatieViv, @benne68, and @EalingGran for your kind words and all here for the support. This truly is a special community. @djklaugh I have passed your tips on to my sister, thank you so much!

 

[Layla]

Oh my goodness, I am just catching up on your thread now. I am so sorry for all you're going through. The depression, you and hubby sick with Covid and the worries concerning your nephew. This is a lot all at once.
Lifting a prayer for healing for all of you. Sending a hug too. Please update when you're able.
@JusticeRider