TKR Rockgirl4's Recovery---already full of surprises.

[Rockgirl4]

@Woodpusher I'm supposed to be doing the leg extensions while sitting in the chair too, but I simply can'tget my leg to work that way. I can do a straight-leg raise while laying on the couch, along with a short-arc quad. Those actually are easy for me....but the leg extension just will NOT work yet. I didn't force it.

As for the ACI, yes it was covered by Anthem Blue Cross & Blue Shield at the time. It was a long process to get it approved. The insurance specialist at the surgeon's office worked on it for weeks, but there were no denials. I think the total came to ~$75,000. It IS surgical, and is a 2-part procedure---which is part of the cost. Surgery #1 is an arthroscopy where you have cartilage cells harvested from a non weight-bearing part of your knee (from the back of the knee---I just can't remember which part exactly). Then you just heal like any other arthroscopy/ clean-out. Surgery #2 is usually 7-8 wks later and is a full arthrotomy. I had a 6 inch incision. He moved the kneecap out of the way and put 36 million of my new chondrocyte cells into a hole on my medial femoral condyle that was 2.25 inches long by .75 inches wide. He used all 36 million cells. This was a problem though. He said the lateral tibial condyle didn't need transplanted because "it cleaned up just fine during the harvest surgery from where he debrided it." X-rays showed last summer that the lateral condyles were overlapping, with the top completely collapsed onto the bottom. My TKR surgeon politely said I was sold a song and a dance---most likely the ACI surgeon just ran out of cells and didn't plan ahead correctly. So even IF the ACI had filled in well on the medial side, it didn't fix the other half of my knee. ...and people wonder why I can barely speak of that man ever again!!!

I forgot to mention the recovery from the ACI arthrotomy was brutal. So far, this TKR recovery is right on par with that---maybe a little better this time around because I knew what to expect with a 6-inch incision. Thankfully no immobilizer though. I was in a straight-leg brace for 8 wks after ACI. Not even a toe touch was allowed so the cells could harden and fill in. I'll take this TKR over THAT any day.

Lastly,now I know ACI is only successful when someone is young enough that their cells can actually regenerate. My TKR surgeon says not to bother unless you're <30 yrs old. Even that is no guarantee, and some body parts do better than others. I know someone who had it done on their patella with zero success. She felt like she was sold a line of junk too. :(

 

[Rockgirl4]

Tonight has been full of anxiety. I can be high-strung at times, but my mind is already going to bad places regarding bending, scarring, and trying not to screw this up. I don't WANT to think about the swelling yet and worry if I'm elevating enough (as it hurts more to elevate than I expected). Yet, I find myself questioning everything, as if I can ward off the worst if I just stay sharp. I might drive myself nuts at this rate.

I am not adding in any more exercises or bending. I know I'm doing my part, which ALSO means not doing too much. Unfortunately the devil on the one shoulder is toying with the angel on the other.

 

[Woodpusher]

Tonight has been full of anxiety. I can be high-strung at times, but my mind is already going to bad places regarding bending, scarring, and trying not to screw this up. I don't WANT to think about the swelling yet and worry if I'm elevating enough (as it hurts more to elevate than I expected). Yet, I find myself questioning everything, as if I can ward off the worst if I just stay sharp. I might drive myself nuts at this rate.

I am not adding in any more exercises or bending. I know I'm doing my part, which ALSO means not doing too much. Unfortunately the devil on the one shoulder is toying with the angel on the other.

Hang in there. We're probably getting mixed messages on the amount of work we should be doing. The physical therapist who came to my house seems knowledgeable and reliable. She's looking for increased range of motion from me and had stated numerical targets. I think I'm going to err on the side of working the exercises. But To each their own.

Oh, and the 1st surgeon ran out of cells even though he harvested 36 million?

 

[Irish471]

@Rockgirl4 , wow, that ADI surgery sounded brutal. My surgeon tried a microfracture on my left knee and the recovery is identical to what you describe. It worked, but I still developed scar tissue and it crunches when I bend it. Eventually it will need replacing, too.

The first 2 weeks are the toughest. Follow your gut instincts. It sounds like you are. I couldn't do straight leg lifts and short arc quads, etc, that the home PT tried to get me to do. Alarm bells went off in my head when I saw what he wanted out of me. I kept thinking this is too much, too soon to even attempt doing those things. and I had a complication I wasn't even aware of at the time. Good thing I didn't push it! The exercises caused me extreme pain. I did the stretching for extension and worked on the flexion (not to the pain of pain, just discomfort), but for the most part, I passed on the other stuff. I asked the surgeon how much I should be working at things and he said no more than one hour per day. The rest of the time is for icing and elevating. You're injured. You need to rest and think of healing thoughts right now

 

[Rockgirl4]

@Woodpusher I didn't explain things too well in my haze of Percocet last night. We don't know exactly how many cells the surgeon harvested for the ACI, but he had to measure the hole as precisely as possible, then send off my harvested cells to be cultured and grown in a specialized solution over 5 wks. That's how it ended up beign 36 million. They supposedly grow enough to fill the hole, with a bit left over, just in case.....

Knowing he needed ALL 36 million cells that were grown/cultured makes us think he never thought the lateral condyle needed transplanted---only the medial condyle---so he didn't plan for it. I remember asking him why the lateral side wasn't transplanted immediately after I saw the surgery report. He blew it off and said it "just wasn't that bad after all." I had a really bad feeling about it for the next year, but what can you do, right??!! I just hoped and prayed for the best. Now knowing how quickly everything went south, I truly believe he didn't plan well enough ahead and just screwed up.

@Irish471 I've had 2 Microfractures also, and though the non weight-bearing did get old after awhile, at least they didn't hurt much. This TKR is the same pain as the ACI arthrotomy, so I'm glad I had an idea of what to expect. Today just isn't a good day, which reminds me of how many people who have said TKR recovery is in no way linear. I think I expected to see/feel daily progress, and that's NOT happening.

 

[lisabl]

@Rockgirl4 when you are really stressing out, or can't sleep in the middle of the night I can really recommend hypnotherapy. I listen to :
Pain Relief for Knee Pain: Hypnosis & Meditation By: Erick Brown
from Audible which really helps me.

 

[Woodpusher]

What a rigmarole, sounds like a knee replacement is more straightforward than this ACI.

I'm feeling pretty good now about my PKR, though not claiming victory after 4 days.

 

[Rockgirl4]

So today is Post-op Day 5. Things keep getting worse, not better. Can someone tell me if this is normal or worrisome???

I slept in small chunks last night and watched the clock, waiting on time for pain pills. This was the first night the 2 Oxy didn't knock down the pain at all. By morning , my back was bothering me as well. I'm sure the anxiety of "how long will this go on?" wasn't helping.

When I get up from the couch to put my leg down, it's as if all the blood is rushing into into the knee and is excruciating for 15-20 seconds. I don't think I could walk without the walker if I tried. I'm not even trying though. The knee isn't as red or angry looking, though still terribly swollen. The fracture blisters got bigger yesterday but have now stabilized. No rupturing yet.

Part of me is scared that I'm going the wrong direction. The other part is thinking I'm still in the "I just want to die" stage that many experience.

 

[Woodpusher]

So today is Post-op Day 5. Things keep getting worse, not better. Can someone tell me if this is normal or worrisome???

I slept in small chunks last night and watched the clock, waiting on time for pain pills. This was the first night the 2 Oxy didn't knock down the pain at all. By morning , my back was bothering me as well. I'm sure the anxiety of "how long will this go on?" wasn't helping.

When I get up from the couch to put my leg down, it's as if all the blood is rushing into into the knee and is excruciating for 15-20 seconds. I don't think I could walk without the walker if I tried. I'm not even trying though. The knee isn't as red or angry looking, though still terribly swollen. The fracture blisters got bigger yesterday but have now stabilized. No rupturing yet.

Part of me is scared that I'm going the wrong direction. The other part is thinking I'm still in the "I just want to die" stage that many experience.

All I know it's that when the pain gets to a certain level, I can't get it down with Oxy. So I try to plan ahead.

Hang in there sister, you're in my thoughts and my song.

 

[9 of 11]

Nap, ice, elevate and know that as absolutely miserable as these early weeks and days are, things do get better. This is time to be selfish, sleep when you can, I dare say most of us get the bulk of our sleep the first few weeks napping in the day. Try different places to rest, I found my family room couch the perfect nest, some love their recliner, some a real bed. Keep in front of the pain curve, I am as guilty as many who let pain tell me when to medicate and by that time, it’s hard to get a head. I am sorry, this is so much more than most of us bargain for.

 

[Celle]

Part of me is scared that I'm going the wrong direction. The other part is thinking I'm still in the "I just want to die" stage that many experience.

You've got it!
Everything you're feeling is normal at only 5 days post-op. It is going to get better, so hang in there. Take things quietly. Rest, ice, elevate, medicate on time. The only exercise you need is walking to and from the bathroom.

If the Oxy continues to not give you sufficient pain relief, can you call your surgeon or PCP and ask for a change of medication?

 

[Jockette]

When I get up from the couch to put my leg down, it's as if all the blood is rushing into into the knee and is excruciating for 15-20 seconds.

Oh I remember this very clearly. It was like liquid fire going down my leg. It was awful.

 

[winemama]

Hang in there, the first 2 are hell, but take it slow, listen to your body. I don’t care if I’m in the middle of a conversation, when I feel like I need to take a nap, I get up and go I tell everyone “I’m out”see you late. do what they’re saying in this blog you’ll be fine

 

[Rockgirl4]

@Woodpusher I'll take that song as a prayer and think good thoughts!!

@9 of 11 I think the "not knowing" is what's so hard----not knowing if this is the worst of it or whether tomorrow is going to bring more surprises. Thanks for letting me know it IS normal and I'm not alone.

@Celle I can call the exchange, but the Dr's office made it clear last week that due to the holiday tomorrow, the earliest we can pick up a prescription is Tuesday morning. I AM planning on calling tomorrow to see what they will tell me. I took a muscle relaxer this morning to see if it would help me sleep through some of this, and it did. This afternoon isn't nearly as "hopeless" feeling. My old surgeon had me a take a much stronger one (Valium) after every surgery, so I wasn't too concerned taking this milder one as an experiment right now. My leg has been twitching some, and those quick movements are not helping. My husband said he will drive the one hour up there and get whatever I need Tuesday--whatever it takes. The mailed refill should arrive Tuesday, but if they will give me something stronger, we'll take it.

I also know I'm anxious about the PT coming back Tuesday. Knowing I'll stand my ground, I'm expecting her to be a bully. I don't like knowing this battle is coming, as it just adds more stress. Our closest friends also wanted to stop by tomorrow for a quick visit just to say hi, but I don't know if I'm up for it yet.

I think my husband totally understands what I meant when I said this recovery was going to be very different. I didn't want to shower yesterday or today, and I don't know if I want to have company tomorrow. THAT is how miserable I feel.

Thanks to everyone for reading this and listening. I really thought I was prepared for this. I wasn't!!!!

 

[Rockgirl4]

@Jockette YES!!!!! That's the perfect description. It takes my breath away every time.

 

[Jockette]

You don’t have to have the PT come on Tuesday, or any other day, it’s totally your decision. You’re right, you don’t need a battle, or the stress anticipating one, you need rest this early in recovery. You don’t even really want to see your friends tomorrow, and you won’t be battling with them! Cancel if you’re not up to it.

Next replacement I have, I won’t be dealing with any PTs, and I’ll recover just fine, without the set backs I suffered from them this time around.

 

[Celle]

I also know I'm anxious about the PT coming back Tuesday. Knowing I'll stand my ground, I'm expecting her to be a bully. I don't like knowing this battle is coming, as it just adds more stress. Our closest friends also wanted to stop by tomorrow for a quick visit just to say hi, but I don't know if I'm up for it yet.

I think my husband totally understands what I meant when I said this recovery was going to be very different. I didn't want to shower yesterday or today, and I don't know if I want to have company tomorrow. THAT is how miserable I feel.

I agree with Jockette. You can phone and tell teh PT not to come.

Or, if she comes and won't listen to you or bully you, tell her to leave and not come back. Can you ask you husband to be there, to back you up?
Saying no to therapy - am I allowed to?

You're not ready for visitors yet, so ask them to come a week or two later, when you'll be able to appreciate them more.

 

[9 of 11]

It’s okay to exercise self care, in this case, that means no visitors to entertain and to have the people who are paid to care for you respect your wishes. Even though I do PT, I assure you I canceled plenty of sessions when I felt yucky

 

[Irish471]

@Rockgirl4 , everything you described is normal. What are your dosages for pain meds? I had oxycontin (10mg) that I took every 12 hours and oxycodone (5mg) that I could take every 4 hours. I added 1000 mg extra strength tylenol 4times per day. I don’t think visitors are a good idea either. I had one who came after 1.5 weeks and she dropped off flowers and took my mom out for the day so she could take a caregiver break for a few hours. If you cannot avoid it, forewarn them that you can only tolerate 30 minutes and definitely no more than 1 hour. But I say postpone. Hang in there! It will get better, I promise!!!

 

[Rockgirl4]

So it's been an interesting evening....I had a friend message me through Facebook. Her husband had my surgeon do his TKR back in February. After an update and lots of tears, she talked me into calling the Dr's exchange. I'm glad I did...

The Dr's verdict: stop all exercises/activity of ANY kind. Do nothing but get up for the bathroom. Ice and elevate continuously. If I thought I was being lazy, it's now time to be even MORE lazy.

His thinking is I am having a severe inflammatory response to all increased activity since leaving the hospital Wednesday. Every session of sitting in the chair, bending the knee, is adding to the inflammation. I explained how little I was doing, and he said even that's too much mechanical activity for the joint, so stop ALL of it for 36-48 hrs. He thinks this will allow me to get the pain under control so the Oxycodone actually works. Between the severe fracture blisters, the severe swelling, and the amount of scar tissue he cut out (proving a past inflammatory response), I'm just an example of how out of control the inflammatory response can get----and apparently this IS seen more in women my age (middle age, 40's-50's). Hardly ever see it in men.

We're canceling the PT Tuesday for sure. He told me to go back to trying the slow bend in a chair on Tuesday night if I feel a lot better. He thinks I'll have turned a big corner by then anyway as that would be Day 8.

Thanks to all who held my hand this afternoon and talked me down. He said I cold take the random muscle relaxer if I absolutely needed it to get some sleep tonight, just not to make it a habit. We'll see how the night goes.