PKR PKR Part Deux: now I’ve got a matching set!<

[MCC]

Would you guys change my thread title to: hello PKR, goodbye patellar luxation!

Thanks!

 

[MCC]

This insomnia is slowly destroying me! Well, that’s a bit dramatic, but I’ve always been a great sleeper and I’m really struggling post surgery. The knee aches and pains aren’t too bad, they wake me up a couple of times per night, so I get up, walk a bit, but then absolutely can’t fall back asleep until 7am. I’m averaging about 3-4 hours per night and getting some napping in during the day, but I think better sleep would help everything. Has anybody experimented with melatonin? Any other tricks? I realize there’s probably nothing but time that will help, but it’s 3:30 am, I’m so tired, and I just needed to vent. I miss sleeping!

 

[sistersinhim]

I lot of people get help from melatonin. Some take 2 Tylenol PMs, but you have to be sure to add all the Tylenol you're taking during the day. My PCP gave me a prescription for a sleep aid for a while, once I was off of the pain meds. Also, there are over the counter sleep aids that can help some. I keep them on hand just in case I have another of those sleep disturbed nights.

 

[Celle]

This insomnia is slowly destroying me! Well, that’s a bit dramatic, but I’ve always been a great sleeper and I’m really struggling post surgery. The knee aches and pains aren’t too bad, they wake me up a couple of times per night, so I get up, walk a bit, but then absolutely can’t fall back asleep until 7am. I’m averaging about 3-4 hours per night and getting some napping in during the day, but I think better sleep would help everything. Has anybody experimented with melatonin? Any other tricks? I realize there’s probably nothing but time that will help, but it’s 3:30 am, I’m so tired, and I just needed to vent. I miss sleeping!

Sleeping will come back, but it might take some time.

It's completely normal to have sleep disturbance after this surgery. Remember this article?
Sleep deprivation is pretty much inevitable - but what causes it?
That's hard if you're used to sleeping for about 8 hours straight, but you're getting 3-4 hours at a stretch and that's quite good. It's also good that you do eventually fall back to sleep again, even if the timing isn't very convenient.

Try not to worry about it. It will eventually sort itself out. Until then, take daytime naps as well. Sleep where you can, when you can, and how you can. Melatonin may help, but don't worry if it doesn't. Somehow, the more you worry about into sleeping properly, the longer it seems to take before you sleep normally again.

Above all, don't lie awake, clock-watching. I moved into the spare bedroom, so I didn't disturb my husband. There, I watched a lot of boring TV during the night. I would often find I had drifted off to sleep with the TV still going.

 

[MCC]

Thanks @Celle! I missed that article but have seen a lot of other folks noting the same sleep issues in their threads. I’ve been trying to keep up a positive attitude, but had a moment of terrible whinging last night. It’s a roller coaster, isn’t it?

I did remember a guided meditation I used pre-op, and put that on last night. Boy did that help a lot! And my OS approved letting me sleep without the bulky, hinged brace I’ve been wearing nonstop since surgery, so I think that will help a lot.

So glad to have found this group! It’s so nice to be able to share experiences, commiserate, and learn. Thank you!

 

[Celle]

I'm glad the meditation tape helped and I'm also glad you are allowed to sleep without the brace now. That must help to make you more comfortable.

 

[SusieShoes]

I can't imagine sleeping with a brace that way. It must feel so much more natural now when you're in bed. That alone might help with your sleep.

Lots of people -- most, even -- who get TKR have trouble sleeping for the first weeks or months. It took about five months before I slept normally again.

 

[MCC]

Thanks @SusieShoes, @sistersinhim, and @Celle! I am happy to report that sleeping without the brace last night was a whole new world of wonderment and delight. I slept 5 hours in a row! Oddly I feel almost more tired now that I’ve gotten a bit more nighttime sleep. It’s a perfect day for a little snooze on my roof under some shade. amazing how exhausting healing is!

Thinking about scars, I’ve got two pretty sizable ones now that are offset a by an inch. They look great overall, but my PT mentioned silicon tape would help minimize the scars. Have any of you tried it? Any specific brands you’d recommend? There are so many different ones on amazon and some are quite pricey.

Thanks!

 

[Celle]

I wouldn't spend any money yet on things to "minimize" scars. Given time, those scars will fade naturally to a pale, silvery colour, and they will be much less noticeable.
Give Mother Nature time to work her miracle.

Have a look at these photos and see what time can do:

 

[MCC]

@Celle that’s pretty incredible! Bodies are absolute amazing. You’re right, no big rush. Really, I’m pretty happy with where they are even now, 5 weeks out. The tibial incision is a little irritated where the brace rubs, but overall, they’re not too bad!

 

[Celle]

Can you put something between your tibial scar and the brace, so that it doesn't rub and irritate the scar?

 

[MCC]

Yeah, generally I wear a sterile gauze and ace bandage when the brace is on, but it slips so much that to keep it up I have to tighten the strap in that area a bit. The OS has me out of the brace at home now, so that’ll help a lot. Otherwise he said there’s no way to really avoid mild irritation at that site. Thankfully the irritated parts don’t hurt at all and still appear to be healing nicely. That red part was the site of a scab that just fell off.

 

[MCC]

I slept better again last night, but had a few more aches and my knee feels much more swollen than it did on Monday. The PAC had me discontinue my brace and drop down to one crutch at home, so I’ve been asking much more of my knee in the last two days, even doing what little activity I am. Right now I get up to walk around every 60-90 min, but I have a very long one level apartment, so a walk from the couch to my front door is 60 yards round trip. I do that walk round trip probably 15-20 times per day. Then I go up to the roof deck and walk another 45 yards round trip and I do that 6-7 times per day. That doesn’t include trips to the bathroom, making myself food, and light cleaning like laundry and tidying my bed area (I’m in the front room right now, so my partner can actually sleep...he’s a much lighter sleeper than I am!).

Does that sound like way too much activity? Obviously I need to cut down now that I’m down some walking aids, but that’s been my baseline since I came home. It hasn’t seemed like much, but I bet that’s why my swelling is still so present.

 

[Jockette]

It does sound like a lot! I would cut it way back.

I have a long, one story house. When I moved in one of my new community friends, who had the same layout, said to walk from one end to the other you had to pack a sandwich!

 

[MCC]

Haha that’s how I feel! I remember when we first moved in, I was coming from a 400 sq ft apartment to this 1700 sq ft behomth and couldn’t believe how long it took me to do a good thorough vacuuming. Ha ha

I’ll cut it back and see how that goes. I keep hoping one day the swelling will just reduce and I’ll see a kneecap again. While that day is clearly not today, my 5 week kneeiversary, I know it’ll happen!

How are you feeling @Jockette? Hopefully gabapentin side effects are getting better?

 

[Jockette]

How are you feeling @Jockette? Hopefully gabapentin side effects are getting better?

They are not better yet, thanks for asking.

I haven’t had any improvement in my knee or foot yet either. But I’ve had my foot problem for 5 years, and the nerve issue around my knee has been intense, so I think good results may take a while and happen gradually.

 

[MCC]

@Jockette my fingers are crossed it helps!

I have a question for you all about swelling. I have almost no deep aches or pains anymore and am only taking Tylenol once to twice daily and diclofenac twice daily (my PAC just prescribed to help with swelling). The swelling improved to a moderate stage pretty steadily up until week 3-4, but so far since then, I see no improvement and my flexion is stuck at 70-75 as a result. I’m sleeping much better and icing and elevating a lot of the day, but am up making food, doing laundry, etc fairly frequently. I’m just not seeing a lot of improvement unless I’m resting 90% of the day. I’m at 5 weeks on the nose today...anybody else had moderate swelling that persists like this? It’s so hard to be down that much when the pain is so much better! I know rest is probably the only answer, but would love to hear whether anybody else’s swelling plateaued and when I should be worried about persistent swelling. There’s a photo in a comment from 6/19/18. Thanks!

 

[Jockette]

I definitely had moderate swelling still at 5 weeks. I remember that specifically because that was Easter last year and I’d gone to a restaurant fir dinner and stood too long because of a mix up with our reservation and even once I was able to sit, I wasn’t able to get my leg up high enough. It was bad by the time I got home and still was the next day. My PT took pity on me the next day and kept the session short and pretty much just did some massage. I hadn’t seen this PT before and l liked how she customized the session. (I saw 5 different PTs in the group over the weeks I was there. )

 

[SusieShoes]

I’m at 5 weeks on the nose today...anybody else had moderate swelling that persists like this?

Well, there you have it. You are only 5 weeks out from major surgery that is nowhere close to being healed. Almost everyone has moderate swelling at 5 weeks.

It takes two months just for bone to heal -- and that's the fastest, not necessarily your bones -- and soft tissues might take months longer before they're finished all the intricate repair work going on. Which is why you are going to have some swelling yet, at least for a couple months and likely longer.

But the swelling will continue to decrease. It'll get better and better. It's just that the space inside the knee is really tight and so any swelling causes some pain/stiffness/discomfort and less bend.

As time goes on you will have more and more good days and better days, and some worse days also when one thing or another annoys your knee and the swelling increases. It'll be a bit of back and forth for a while until time works its magic and the knee becomes trouble-free.

Good to hear Tylenol is working for your pain! Strong painkillers can really mess with the head and energy levels.

 

[MCC]

Well, I ended up going on my trip to Oregon. It was supposed to be a 4 hour drive and it ended up being 7.5 thanks to traffic. Holy swelling, Batman!!!!! I ended up staying at the hotel during wine tasting day, but got to hang with friends in the afternoon, evening, and the next morning. The drive back wasn’t bad, though I’ve been very happy to take things very easy since and things are improving a bit. I will say it was a good emotional boost to get a change of scenery and see some dear friends!

I’m still stuck at 70 degrees flexion due to swelling and last night had a bizarre 15 minutes of bad shooting pains on the medial aspect of my knee that I haven’t had in a couple weeks (apparently where they cut the retinaculum) that resolved with a little walk. They woke me up from a dead sleep and apparently I was vocal enough about them I woke up my partner in the other room. ‍️ this is the back and forth, I suppose!

I am starting to get the blues a bit. Recovery is lonely! I’ve got projects and stuff to do, but I’m really missing being out and about. And I still have some fogginess/trouble with concentration. That part has been a real surprise! I’m trying to keep positive, but I really can’t imagine I’ll be driving or able to do much more than 3-4 blocks and then icing and elevating in the next month. My surgeon thought I’d be driving in 2 months, but I’m learning surgeons are a skosh optimistic about timelines...

Of course I’m hoping I suddenly get off this plateau, but it feels like I’ve been here a couple of weeks already. Thankfully my PT and OS agree, no reason to push my knee at all. I’m hypermobile, so stability and strength are more important than aiming for flexion beyond what my knee wants right now.

Anyway, I’ll keep working on being patient and positive! Have a great day everyone!