TKR MB's road to recovery - 7th month update

[Wednesday]

We've all been through meltdowns. Mine were mostly at night. The first two to three weeks are the most difficult, but even now, at seven weeks, my good days sometimes alternate. It's different though. In the first few weeks it was good days followed by bad days. Now it's good days followed by not-quite-so-good days. So it does get better.

 

[dtmbf]

Hi - it's me again with more questions. I think it must be progress if things change but it is disconcerting if you don't really know what's happening.

So, 1st, my swelling has decreased quite a bit. But now it feels like my knee is "clunking" when I walk. Not all the time but often enough it makes me stop & take stock of what I am doing. Is this a normal part of healing?

#2 question - I occasionally feel as if there are ants running up & down my incision line - is this part of the nerves waking up? I'm still pretty numb on both sides of the incision.

#3 - if the swelling is decreasing does that meant the knee is more unstable? This started last night - a sharp, fast pain that runs in a straight line down the outside of my knee about 1.5 inches from the incision. It's the kind of pain that makes me cry out. But it doesn't last long, but it's intense. I was wondering if the swelling was supporting some of the knee structures & now tt the swelling is less, then there is less support. Just trying to make sense out of what I'm experiencing.

Otherwise, status is pretty static. PT came again today - 2 days in a row & that will not happen again. But this will be the PT I will have for the next 4 weeks so I wanted to get that relationship going. I was very happy with her. She thinks I'm being way too hard on myself - she told me I was walking beautifully ( I'm on a walker or crutches for 3 more weeks), my strength is very good, my quads are firing strongly, & I'm at 0/95 for extension/flexion. She thinks I'll take off once I get over the hump. That was nice to hear, but when the pain is still consuming you, it's hard to believe. And the pain is never ending - 3 at its best and spikes to 7-8 with activity. And I know I'm not alone based on this forum.

Thanks for any clarity you can help me achieve!

 

[Celle]

Hi @dtmbf MaryBeth

@Josephine is the expert, but here are my less- expert comments:

1. Knee clicks and clunks are normal. They happen because, instead of soft cartilage and other tissue, you now have hard metal and plastic. Most of us get those noises. Some go away and some persist - at over 2 years since my surgery, my knee still clunks occasionally.

2. Yep. That's the nerves. It will lessen.

3. I'm not so sure about this one, but I think that could be the nerves, too. Some people describe them as zingers.

Listen to your PT. Thank goodness for one who advises you not to do too much!

It sounds as if you need more pain medication. 3 up to 7 or 8 is not ideal. Are you taking the medications on a regular schedule, at the prescribed doses? If you are, and your pain is still bad, perhaps you need to get back to your surgeon or your PCP and ask for something that works better for you.

 

[Mamahut]

Hang in there! I had a crazy PT in the hospital, I cried and never saw her again I had a nurse that just let go of me when I was about 6 inches from the bed. I was so happy to get home, I bet your glad to be home too
I live in a 2 story house and the stairs had me worried sick until the day I went up them with very little trouble..lots of heavy breathing but not too bad. Both of my ankles are black and blue??? I thought it was from swelling until I read this thread. Hmmm

 

[dtmbf]

@Celle, yes I am taking my pain meds on schedule & around the clock. I set an alarm to get me up during the night. I'm on 1gm Tylenol every 6 hours. I'm also on Dilaudid 2-6 mg every 3 hours. I have a spreadsheet to keep track of when I take the meds. I take the max dose of 6mg of the Dilaudid except for the 1st middle of the night dose when I take 4mg. I foolishly tried to step down the Dilaudid from 6 to 4mg for 50% of the daily doses 4 days ago & it was not a wise move. In fact it was a totally stupid idea. My pain was a bit out of control & it took me some time to get it back. I'm allergic to Oxycodone, so that's not an option. I have a pretty high pain threshold but I just feel like I've never had a handle on this pain from the moment I woke in recovery. I had constant breakthrough pain while in the hospital on the 6 mg of Dilaudid. I talked to the visiting nurse today & she thinks I need to talk to my OS. She's probably right, but I can just hear him say "I told you a knee was more painful than your hips". My PCP will not get involved in post op pain management. I knew knees were painful, just didn't realize how bad they really were.

I'm sleeping just fine, so that's not a contributing factor. I cut back on all the exercises I was doing based on feedback from an earlier post. I do nothing around the house. My housekeeper is coming more frequently so I'm not tempted to even try to pick up. I cooked a ton of meals prior to surgery, so my husband can just thaw & rewarm. I ice religiously & elevate on 3 pillows. I can't think of anything else I could/should do differently. Is there anything I've missed?

 

[71Beetle]

Hi @dtmbf it sounds like you are coming along well considering you are only 9 days in. Hang in there, keep doing the RIME and you will be fine.

 

[kneeper]

Yes it sounds like you should talk to your OS about the pain. Good idea to have the spreadsheet to keep track of your doses.
I'm assuming you're also icing and elevating a lot?

 

[Josephine]

my knee is "clunking" when I walk

normal - it will either go away or you will become accustomed to it. 5 years on I can make my knee clunk to order!

I occasionally feel as if there are ants running up & down my incision line - is this part of the nerves waking up?

Quite possibly.

I'm still pretty numb on both sides of the incision.

Numb area after TKR: how long will it last?

if the swelling is decreasing does that meant the knee is more unstable?

not necessarily. Read on ....

a sharp, fast pain that runs in a straight line down the outside of my knee about 1.5 inches from the incision. It's the kind of pain that makes me cry out. And the pain is never ending - 3 at its best and spikes to 7-8 with activity
I foolishly tried to step down the Dilaudid from 6 to 4mg for 50% of the daily doses 4 days ago & it was not a wise move. In fact it was a totally stupid idea. My pain was a bit out of control & it took me some time to get it back.

It was a stupid idea! The shame of it is that though you only did it for a day or two, the aftermath can last a lot longer. Two days of cutting back can take a week to catch up on. Don't play with the pain, it always wins!

I'm on 1gm Tylenol every 6 hours. I'm also on Dilaudid 2-6 mg every 3 hours

Is that your prescribed amount? And are you taking 2mg at a time or 6?

She thinks I'm being way too hard on myself

In what way? Come on, tell aunty!

 

[dtmbf]

@Josephine - thanks for all the answers. I may think I know the right answer, but to have answers other than my own is terribly reassuring.

I'm currently taking 6 mg of Dilaudid every 3 hours, except for around the 0200 dose, which I drop to 4 mg. I'm prescribed 2-6mg every 3 hours so I'm within my dose limits.

And beat me with a wet noodle - decreasing my Dilaudid to 4 mg for that 24 hour period was the most incredibly stupid thing I have done in a long time. I was only 1 week post op! In retrospect I think I was listening to too many of my friends, many of whom are nurses, none of whom have ever had a TKR, tell me 6mg of Dilaudid was way too high a dose to be on. It was the dose I needed, and you're right - it took me days to recover from that idiocy and only in the past 24 hours do I feel like I might make it thru the day. I haven't had the awful spikes of pain for about 24 hours.

I'm not quite sure why my PT thinks I'm being too hard on myself. She probably thinks I should be happier about my flexion & extension numbers, or that the stairs aren't a problem, or that she thinks my walk is excellent. I'm not sure. I'm not unhappy - I know I've made some good progress and that if I'm smart there's more progress to be made. I work my rehab like I always have but this is just way harder than I expected. So I moan & groan my way thru our sessions, which is very typical for me. Plus I have a bit of a flat affect for me - and she knew me 1st when she was my husband's PT as he was recovering from a broken hip & femur. So I'm not my usual bubbly self. I'm grateful for what I have achieved so far, but it's gonna be a cold day in hell before I have my right knee replaced. I am forever grateful I found this forum - I would feel very alone without it.

 

[Josephine]

She probably thinks I should be happier about my flexion & extension numbers, or that the stairs aren't a problem, or that she thinks my walk is excellent.

So what is your ROM just now? And are you finding the stairs a problem or feel you aren't walking properly? Are you still using crutches or a cane?

I work my rehab like I always have but this is just way harder than I expected. So I moan & groan my way thru our sessions, which is very typical for me.

Meaning, I suppose that you are 'working hard' at it? You know what I have to say about that!

 

[dtmbf]

@Josephine. I probably stated my progress poorly. My flexion is at 95 and my extension is 0. Stairs are absolutely no problem & Lynn complimented me on my walk - I have the heel toe thing down pat, & I walk deliberately and carefully. Per OS orders, I'm using either a walker or crutches till I go back to see him at 4 weeks post op. Then I can progress to a cane based on PT recommendations.

I am so NOT working hard on my PT. One of my earlier posts reviewed what I was given to do for PT on discharge. I thought, based on feedback from this forum, it was too much and that is indeed what everyone chimed in to tell me. So I pulled it way back - I'm doing the ankle pumps, quad sets, glute sets twice a day, 8 times for each one. I'm doing heel slides, both laying down & sitting in a chair, along with standing hip flexion & knee kickback, the same frequency, but at different times. I didn't want to bang thru my exercises all at once, but rather prefer to spread them throughout the day. I'm also walking inside the house for 5 minutes twice a day. That doesn't include the number of times I walk to get something or for bathroom breaks. My OS doesn't want me to walk on any inclines or on the grass so that pretty much rules out the outside of the house for now. This PT regimen seems to be working OK for me right now. I'm not pushing myself to pain nor does my PT try to either. I can't do straight leg raises by myself yet so those only get done when PT is here to assist. She tells me I'm almost there, but unfortunately when I tried to do them alone, my hip engages & I've had some hip flexor pain on top of the knee pain.

For once in my life I'm behaving myself & really trying to stay true to the collective wisdom on this forum.

 

[Josephine]

Jolly good! I'm very pleased to hear it!

the collective wisdom on this forum.

Now I like that saying! Must remember that!

 

[dtmbf]

It's been a rough couple of weeks - I'm 3 weeks out from surgery - hopefully the worst is over but I keep waiting for something else to happen. And believe it or not, my knee is doing well according to PT. So the good news 1st. I'm at 100 for flexion (assisted - 95 non assisted) and 0 extension. I'm still quite swollen, rock hard in some places around the knee. PT has been massaging trying to break up the logjam of swelling with some success. I can tell when I do too much cuz my knee will stiffen & swell even more. I'm wrapping the leg/knee in 6" ace wraps - the Ted stockings just cut me badly in the back of the knee. My knee will clunk on occasion towards the back of the knee, when I walk. Feels funny but no pain. I've been able to cut back on my pain meds, but not off them entirely - I know it's too soon. I'm still taking Tylenol 4 gms daily, & Dilaudid - usually 4 mg at night and when I get up in the morning & 2 mg every 4-6 hours during the day. Seems to do a good job keeping my pain at the 1-3 level, with spikes to 4-5 after PT. I sit in ice with my legs elevated pretty much all the time. My biggest disappointment has been the cryo cuff. I thought it would be fabulous but I just didn't think it got cold enough. Frozen peas around the knee & a blanket of blue ice for behind the knee is way more effective.

I've had 3 major areas of concern I never expected. First - my ankle on my operated leg has been almost as painful as my knee. It was a lovely shade of purple & burgundy. I still cannot position it comfortably & ice it with the same frequency as the knee

Second issue has been my hip flexor or psoas on my operated leg. I've had both my hips replaced and I was worried , rightly so, that my hips might come into play. So I was having a terrifically difficult time doing some of the knee exercises cuz the flexors would engage & were incredibly painful!!! Even at rest so I was using heat to try to relax them. I seem to have overcome that as my quads have become stronger post op.

Third and most significant issue is constipation. I know it's from the pain meds but I didn't have a problem with these same meds after my BTHR so I was shocked when it became an issue after the knee. And we are not talking your garden variety of constipation. I almost got hospitalized due to the pain, dehydration, rise in BP, etc. It's a little more under control but still something I worry about. My appetite is non existent but I force myself to eat the protein I need for healing. My entire GI system has been affected by this surgery. I woke up in recovery nauseous & was on Zofran & Reglan for days while in the hospital. And it just hasn't gone back to normal yet.

So to end with the knee. I have to believe everyone who tells me how well I'm doing cuz I'm not feeling it. I do see the progress I've made - this week for the 1st time I can do an unassisted short arc and straight leg raise, my pain is definitely less, I'm feeling perkier, and my ability to focus is improved. But as usual I want more and faster - and I know I have no control. It's really one of the first time working harder doesn't get me what I want. And right now, there's no way I'm getting my other knee done till the memory of this one fades!

 

[Jamie]

I know it's rough sometimes in these early days of recovery. It may seem like it's been forever, but really it's less than 4 weeks. There is a lot of time for things to get better. I'm sure that will happen and you'll start to feel more at home with your new knee.

It's probably difficult not to compare this recovery with your hips. But....frankly, knees are worse in terms of pain, swelling and length of time before you start to feel more like yourself. So try to just focus on each day and doing what you need to do to get through it.

Some people find it helpful to keep a journal (or report updates on your recovery thread). If you do this and look back on a weekly or monthly basis, you'll see progress. It can be small steps sometimes, but the movement is forward and puts you closer to getting your life back.

 

[dtmbf]

@Jamie - I did post more routinely after my BTHR and you're right - it was very helpful to look back on how far I had come. Now that I am feeling like I might actually live, I'll be more diligent.

To that end, I must confess I overdid it on Wed. Which was my 3 week anniversary. I was feeling good, my PT session went well, and I was feeling feisty. Big mistake. By bedtime my knee had blown up, and I was miserable. So I went back to the basics yesterday, today PT really worked on trying to move around some of the swelling, and I regained my flexion. It doesn't help that my very good friend had her knee replaced 2 days before me and she's going back to work next week! Her flexion is at 130, no limp, no swelling. I know every recovery is different, but honestly I'm going to be not nice for a minute. I'm in shape, work out daily, and no medical issues. She's overweight, Type 1 diabetes, post stoke, silent MI the month before surgery, and she has no swelling & going back to work! Fortunately we are such good friends that when I'm yapping at her today she understood, 1st commiserated with me then started laughing at me. Oh well, I came to my senses and she's so happy she beat me in our recoveries. So that's my whine for the day. I just want to get rid of some of this swelling - should I be doing anything else?

 

[Jamie]

That is a difficult position you find yourself in.....a friend who fast tracked you in your recovery and you're the healthy fit one! Life is a mystery!!! The best things you can do for swelling are ice (as much as you can - even at night when sleeping), elevation, lymphatic massage (rubbing from below the knee up to mid thigh to push fluid up toward the trunk of your body), keep pain controlled and try not to overdo things when you feel spunky. That's a lot and we all blow it now and then during recovery. But, going back to the basics is just the right thing to do when that happens. You'll be fine. You are actually doing very, very well!!! Remember your surgery was less than an month ago!

 

[dtmbf]

I'm at 4 weeks now after my LTKR and the sky is getting brighter! For the number crunchers (that would be me) I'm at 105 unassisted and 109 assisted for flexion. PT thinks my gains will be slow as I was at 95 unassisted pre op and my soft tissue adapted to that. Slow is OK as long as its steady. Extension has always been at 0 since the 1st week.

My surgical pain is gone & I'm left with the swelling & the tight band feeling. Not to mention the deep numbness that doesn't hurt but feels very weird. I hate to touch it where it's numb. I ice religiously and elevate. It is easier for me to move around, I barely kick my leg out to sit, and I can sit in a chair with my feet on the floor almost normally. I'm still using a walker as ordered till I see my OS next week but I'm not ready for just a cane - think the Canadian crutch is next.

I'm practicing stepping up on the stairs - up,down, up, down on the operated leg but no weight is place on the leg. Im doing it just for the movement. I have trouble clearing the step without swinging the leg out, so even tho I am not ready to do reciprocal steps from the strength perspective, I at least want to get the lift back. My knee has felt wobbly the past 2 days - my swelling has decreased - do you think I feel a bit more unstable cuz all that swelling is no longer supporting and holding in my knee? Clearly my quads need strengthening but it ain't easy - I get pain at the bottom of kneecap and up the medial aspect of my lower knee - I'm thinking the patella tendon is waking up - could that be correct? My patella tracks nicely up & down and has lateral movement also. The bottom of my incision is still very tight - more swelling down there but the top is nice and loose. I haven't done any scar massage, as I'm waiting for my OS appointment next week. But my scar is a work of art - totally straight and in some places you can barely see it even now. You'd think a plastic surgeon did the closure!

I've cut back on my pain meds. Still taking Tylenol 3 gms a day and Dilaudid - usually 4 mg in the morning & evening and 2 mg around 2-3pm and that's keeping my pain at about a 1-2, with some increase immediately after PT. On the days I don't have PT I don't have the higher pain level as I don't do 1 hour of PT at a time. Rather I work in my exercises throughout the day and I think I do more and better at them using this approach. I really want to ramp up my walking but I live on a knoll so anywhere I go is on an incline, which my OS doesn't want me to do. So I have some creative walk patterns thru the house & on the outside deck. But I know I'm lacking stamina cuz I can't walk longer distances. But perhaps that has helped my recovery cuz I can't push myself on that. I haven't cried in a week - major change!

My gut is still not back to normal - and I'm anxious to get off the Dilaudid. I've tried but it was a no go. I still need the dilaudid or my therapy suffers.

All in all, I turned a corner about 5 days ago in terms of the pain & ease of moving. Still a long way to go but I'm getting there.

 

[Jamie]

Great report, Mary Beth.....I know it seems slow but I think you're doing just WONDERFUL!!!

 

[Jozilla]

Great update! Good for you!

 

[dtmbf]

I had my 1st post op visit today with my OS. He was happy with where I was and what I was doing - despite the stiffness I had after a 1 hour car ride to his office. Xrays looked good even to my novice eye. He cleared me for using the cane till there was no limp and I honestly only have a very slight limp if I walk deliberately. Weight bearing as tolerated & wants me to advance the exercises - he wants me on the bike (nothing extreme - he really just wants the rotation which I cannot do right now) and to walk more. He got 125 flexion in the OR but said I would probably only get to about 120 in recovery and I'm at 110 right now with effort. If I understood him correctly he indicated that the fact I had my hips replaced and that the hip & knee share many muscles would have an impact. I have my op report & read he had to release my IT band before closing as it was tight & constricting - again he said something about the hip replacement and the IT band but I hadn't read the Op report till I left so I need to ask him a little more about that at my next visit. He has no clue why my ankle killed so much after surgery, and swore they moved my leg at the calf and not at the ankle, so he thought it was the pooling of blood - which in my case was significant. I can do scar massage & also put Vitamin E on the incision - which is a work of art. He told me I could have an MRI of my knee & hips but that they needed to make some kind of adjustment to accomodate for the hardware.

I have decided, rightly or wrongly, to a trial of just taking 4 gms of Tylenol a day for pain relief, and not the Dilaudid. Yes I have a lot of stiffness & tight band feeling but the side effects of the Dilaudid are almost debilitating at this point. I'm at 5 weeks post op so I thought I would give it a go. If it doesn't work or impacts my PT I will restart. I had cut way back to only Dilaudid 2 mg three times a day, and even in doing that my GI system was an absolute mess. I may be making a mistake but I have to try. I've lost weight, I am constantly nauseous & constipated, have no appetite & have to force myself to eat. And no matter what I try nothing seems to change this course. I'll know in a day or two the wisdom or idiocy of my trial.

So overall I was pleased - he reiterated it would be 3 months at least before I felt like myself and up to a year for full recovery. I can wait.