MUA My new left knee-has Athrofibrosis, what now?

[Layla]

I am sorry you're stressing over this. It is understandable though when we're healing from a joint replacement for the first time, or MUA, and dealing with the uncertainty of what to expect. You are recovering from the controlled trauma of surgery, then the MUA only a month ago, please try to be patient and give it more time.
You will get there!

This may ease your mind in regard to warmth, hopefully so and it will become one less thing to focus on or be troubled by -
Warm feeling around the knee: the operated site may feel hot and the heat may last 3-12 months. As part of the healing process, the operation site requires more blood supply from the body, and it is this extra blood supply which gives rise to the local heat.

So view it as your miraculous body doing just as it should. It's healing! Give yourself the TLC you deserve.
My wish for you is peace of mind and total healing.
@Cinders2023

 

[Cinders2023]

Oh my, you are doing way too much for not even a month out from an MUA.

I wondered if this was too much, but 10-15 minutes of walking didn’t seem like a lot at 4-1/2 months and I am only rocking the bike until I can make a rotation then slowly rotating with no resistance for about 5 minutes. At PT I have gone from 17 to 13 on the seat distance, even though I am bending less this week than last week. Go figure. I decided to forgo the treadmill and just do my walking doing ADL’s for a bit.

Warm feeling around the knee: the operated site may feel hot and the heat may last 3-12 months. As part of the healing process, the operation site requires more blood supply from the body, and it is this extra blood supply which gives rise to the local heat.

This does make me feel a little better. Hard not to panic when I already know I am dealing with adhesions, and that heat in the knee does make that problem worse.

Unfortunately, icing and elevating for hours every day, going on for months, is a terrible thing for your mind to endure. These last few days, depression has been kicking my behind. So sick of this knee being all I can think about every moment I’m awake.

 

[Layla]

These last few days, depression has been kicking my behind

I'm so sorry. That's miserable for sure. Try to stay as busy as you're able and engage with others as a distraction. It does always seem we notice pain less while busy.

While it may not be easy or comfortable to get around just yet, short outings like a lunch / dinner out at an off time, a car ride listening to your favorite music, calling or emailing an old friend or family member may all effectively help with the blues you're experiencing.

Give yourself permission for a week off of worrying, you know....like Scarlett O' Hara's famous line in Gone With The Wind "I can't think about that right now, if I do, I'll go crazy, I'll think about that tomorrow". Allow yourself a worry break for a period of time and when it comes time to to go back to worrying, you may not be interested.

 

[JusticeRider]

I’m so sorry, Cinders. Please try not to think the worst. It took me 5 months to get my swelling under control (mostly!) and I didn’t see any significant improvement in my ROM until then. You’ll need some more time now after the MUA, but I really think it’s all about the swelling, at least it was for me. If you can, try to let go of your short term expectations. Just *be* for a while and surrender to the time it will take (so much time!). For me, it helped to close my eyes and listen to music. One song that helped me so much was You Can’t Rush Your Healing by Trevor Hall. It’s a beautiful song and obviously meaningful in this situation. Another one that I appreciated when things were at their worst was Comfortably Numb by Pink Floyd (edit to say, if you listen to this one, just skip the first 30 seconds. It’s really weird and not soothing at all!). Thinking of you Cinders, and wishing you patience and peace.

 

[JusticeRider]

Also, Be Here Now by Ray LaMontagne

 

[Layla]

Hi Cinders,
It's been two months since the MUA...wondering how you're doing?
We'd like to hear from you and we're always here for support if you feel the need.
I hope you have a good week!
@Cinders2023

 

[Cinders2023]

Hello, it has been a while since I checked in. I am still progressing at a snail’s pace, but still moving forward. I am still swelling a great deal and my OS does seem bewildered as to why. All of the bacterial and fungal tests we did came back negative, and X-rays show the knee is aligned properly, so now we wait to see what time will allow me to do. I can bend to 90 without too much trouble and topped out at 114 So far. We have started working on stairs at PT and I still need to get some strength in my quads. My gait is still pretty wonky, but I can get around inside without my cane now. I use a cane outside just for added stability on uneven ground.

We just took a 3 hour flight over the weekend to attend a wedding up in Seattle. I survived with ice and some saved up pain pills, but I’m glad to be back home. Seattle was difficult to navigate with mobility issue, at least for me. I decided I will not be doing anymore flying until I can get through the airport without needing a wheelchair. Sitting with my foot on the floor for long periods is still difficult, but as soon as I can get my foot elevated relief comes quickly.

my OS told me to continue PT as long as I feel I am getting a benefit from it, and my next visit is in 3 months. I will keep plugging away and hoping someday it doesn’t hurt, it doesn’t swell, and it finally bends!!!

 

[JusticeRider]

Hi Cinders, thanks so much for posting! I’ve wondered how you are doing. I hope your swelling eases and walking and ROM improve as time goes by. Please do keep us updated.
Wishing you the very best

 

[EalingGran]

We have started working on stairs at PT and I still need to get some strength in my quads. My

Even slow progress is good. Two months after MUA is still early I reckon. Once you can build up some quad strength progress will get faster but it is hard in the early days to get the balance right and not overdo things. Good luck!

 

[Tentcamper]

@Cinders2023 wow, did you see what you wrote? Significant progress in 5 weeks? I really hope I can report that in 5 weeks. I'm still really swollen and my ROM is 45. I'd be happy with 60. I think OSs are focused on the numbers and not the patient. Shame on them for making us feel like we will never recover if we don't take drastic measures. I hope your recovery is moving along. Make sure to get a refill on your bottle of 'patience'

 

[Cinders2023]

Significant progress in 5 weeks?

I appreciate the support, but it has actually been 6 months since my TKR and 2-1/2 months since my manipulation. My swelling is still significant and after peaking at a ROM of 114 I am back down to about 94 unaided, 105 with a bit of help. I’m not really surprised, it makes sense I cannot bend with a swollen knee. The frustrating thing is (to quote my friend Jammy) “why oh why oh why“ am I still battling a gigantic swollen knee at 6 months post surgery? No infection, no loose or misalignment of the device. So I wait, I ice around the clock, and I walk, stationary bike, and stretch every day. Even when I rest my knee the swelling is still there. Even just doing ADL’s is hard for me to accomplish without pain.

Am I better off than I was before the manipulation? Yes, I am walking without a cane most of the time now. Am I better than before the surgery? Not yet. But I am trying to be hopeful that I can get there.

 

[Tentcamper]

@Cinders2023 I feel you about the swelling but I take heart in Justice Rider's journey. She also had lots of swelling and has made great progress. Have you considered acupuncture? I did five sessions and my external swelling has decreased to the point that I can almost see my kneecap. All my external swelling is soft rather than hard. I find I can walk easier. Now I have to be patient and let the internal healing happen.

 

[Cinders2023]

Have you considered acupuncture?

This is something I haven’t tried yet, but I’m going to see if I can find someone to do this. I feel like I have tried just about everything else.

 

[Tentcamper]

@Cinders2023 You start feeling like you will never be 'normal ' again. I'm not quite at the point where I regret doing this and hopefully won't get there. I keep looking at hiking and snowshoeing pictures of myself knowing I can't do those without this operation. It reminds me why I did it.

I'm trying lymphatic massage too. I'll let you know how it goes.

 

[Cinders2023]

7 month knee-aversary update. About 2 weeks ago my PT and I decided to take a break. This was his suggestion to take a break until I go back to the OS next month. I guess he felt like we stopped making progress. We were switching focus from ROM to building quad strength over the last 6 sessions. My ROM peaked at 114 and dropped to 105 if I pushed and about 95 on my own. My swelling is slow to resolve, but when measured just above the kneecap is only about 1/2 cm bigger than my non-surgical knee. I’m sure there is still swelling under the kneecap also.

I walk an average of 7,000 steps a day ranging 4000 on rest days and 9000 on busiest days. I am on the recumbent bike 1-1/2 miles a day (10-12 minutes or so). I am taking a break from the ice machine overnight, but icing several times a day when I can and in the evening before bed.

I gave up my cane over the past month, but still walk with a limp. I almost feel like I am dragging the surgical leg around. It is stiff, and feels like I have a weight strapped to my knee. I have been wearing compression hose or knee sleeve to try to keep swelling down, but feel like it makes it harder to bend when I wear them.

I would say looking at what I wrote at my 6 month update, not much has changed. It is still difficult to get in/out of the car, put a sock/shoe on my left foot, get in/out of the bathtub, up/down from the floor. Pretty much every step I take is from uncomfortable to painful. I did not expect to have difficulty with these things that I could easily do before surgery.

I see the OS in person on 9/13 and look forward to discussion of what to do next to figure out what went wrong with me. For anybody who is still reading at this point and had adhesions: when I bend my knee to the stopping point I feel a tight and almost pulling sensation above and below my knee as well as on the medial side of the kneecap. Is this possible adhesions again? It almost feels like something under my kneecap keeps me from bending.

So depressing. Before surgery I had pain, but still some mobility. Now my mobility is terrible and I’m still having pain unless I’m sitting in an elevated, iced position. Not the outcome I had hoped.

 

[Cinders2023]

Yesterday was 8 months from surgery and 4-1/2 months from MUA. I will see my OS in 9 days and I look forward to having him see me in person for the first time since my MUA.

I am pretty much the same as my last 2 updates. No improvement in bending, doing ADL’s, walking, or ability to stand for more than 30 minutes or so. I am still taking Tylenol 2-3 times a day, celebrex twice a day and gabapentin at night for nerve pain. In the evenings my leg will feel twitchy if I’ve been up a lot during the day. It is still painful with every step I take, and I still walk with a limp. The strangest part is that I have a pulling sensation in my thigh and shin when I bend or walk. It feels like I have a 5 lb. weight strapped to my knee when I walk, so my gait it wonky.

Still doing stretches and rotations on the bike, still not getting enough ROM to come down stairs, but I can go up. Hopefully some answers next week, as I have made no progress since I spoke to the OS in June. So lucky I didn’t have a regular job I needed to get back to. There is no way I could have returned to work yet. I am barely getting household/farm chores done on my own. Glad my husband and daughter have stood in the gap these last 8 months!

 

[EalingGran]

I am sorry for your lack of progress. I hope you can get some answers from your surgeon.

 

[JusticeRider]

Cinders, I’m so sorry things have been so difficult. It must be discouraging to be dealing with pain still. It’s good you have help from your husband and daughter to keep things around your home and farm on track. I’m sure they love you very much and are happy to be able to help you right now.

I am glad you’re seeing your surgeon soon. You might want to prepare a list of questions for him to make sure you get to talk about all your concerns. I don’t know about you, but sometimes when I get in there, I forget half of what I wanted to talk about if I don’t write it down. It sounds like you have some legitimate concerns you really need to address with him. I hope you can advocate for yourself and that he will listen.

Please let us know how it goes. I’ll be checking here to see. Wishing you all the best.

 

[Cinders2023]

Had my visit with the OS yesterday and although I didn’t get any definitive answers I did feel validated that he too thinks my knee is not where we had hoped it would be by now. Good news is that my X-rays look good and the implant appears to be aligned and tracking properly.

Swelling is still ongoing and is usually indicating an underlying problem. Although all my labs in April showed no sign on infection, he was still somewhat concerned and offered to do an aspiration yesterday to check again. I opted to do some labs and a CT scan before we go sticking a needle deep in the knee again. He said we could do a bone scan when I’m over 1-1/2 yrs post op, but it was too close to surgery for the results to show a true problem. so that’s an option if I am still having problems down the road.

He referred me to a pain management Dr. for the ongoing pain I am having and to possibly get approval to try acupuncture for the pain and swelling. OS wasn‘t crazy about the acupuncture idea, but I pushed.

Lastly, he set up a telephone visit with a sports injury doc to see if he thought I was a candidate for arthroscopic lysis of adhesions.

He was very sympathetic to my situation and said if I was 76 instead of 56 he’d probably recommend I just see if I could live with what I have. But I don’t think I can. My 76 year old mother is more ambulatory than I am now. He measured me at 10-15 and 100. He acknowledged that my extension was probably affected by my 3 hr car drive. I was getting 0-5 when I stopped PT but noticed lately my extension is more like 5-10 even though I work on it every day.

I do wish that someone could say This is your problem, and This is what we can do to fix it. I am not a fan of the process of elimination game, but at least we are doing some things to see instead of just waiting to see if I’m going to get better.

I know it was a long update, but we went over a lot of things at this check up. I finally see a small light at the end of the tunnel, hope it’s not a train!

 

[Cinders2023]

Getting my CT scan tomorrow! Yay

Radiologist final report on X-rays agreed with the OS : stable hardware and alignment. Well fixed, well aligned, well positioned, and no significant soft tissue abnormality. It looks great for a knee that doesn’t function properly! Go figure.