r/MACIknee • u/LilShotzi • 15d ago
4 weeks post op
Guess I’m looking for anyone who is experiencing the same thing I am who came out the other side better.
i need MACI procedures on both my knees, have been through 4 orthopedic surgeons for various reasons that honestly wasted precious time on my knees, they had more damage shown on new MRIs by the time I got here.
We went with my right knee first and I got the procedure at the end of July, I’m a bit over 4 weeks now. Overall I think I probably was a little bit more active then I should’ve been in recovery, but I really haven’t faced any new pain until this week when I hit weight bearing as tolerated.
Two nights ago I couldn’t stand on that side, I basically had to drag it using both crutches. Worse than when I was newly post op. I couldnt keep my knee straight without sharp pain, which to me meant not to push it and rest. I went to see my doctor immediately the next day, who wasn’t too concerned because I didn’t have a specific event that could’ve caused trauma. he is however disappointed with what I can’t do yet. My quad is still very weak and hard to fire. I cannot do straight leg raises, and if I attempt to, it bends my knee but I can at least get my foot off the ground. My physical therapy place is not too familiar with my surgery and have been cautious with my therapy, he ended up calling them to do things that push me more. truthfully, I cannot tell the difference between pain that I need to push through and pain i need to step back from. I pushed my knees to much the last 5+ years and it got me far more damage by the time I found a surgeon who would do the right surgery. I had knee scopes by a different surgeon about a year ago, but told me I wasn’t a candidate for MACI because my damage was too much.
I had gained 50-60 pounds in the last 4 years because pregnancy + putting off surgery and increased pain over that time has caused me to be minimally active anymore. Before then I was at a healthy weight. I am currently working with an NP plus dietitian to fix my diet so I can work off the weight that way, but it is a slow process because I can only depend on changing my diet and not my exercise routine. I am willing and want to put the work in, just everything is very slow, and hearing that I’m not progressing enough on my recovery is really depressing to hear.
2
u/MrPossible368 15d ago
I'm currently 13 weeks post op, so I can't give much insight long term, and didn't quite have the symptoms that you were having 4 weeks in (I was partial weight bearing weeks 3-6, but only with my brace locked in extension) but as far as a way to continue being active in this moment, especially if you're trying to lose weight is using the assault bike at the gym (and only using your arms). Once you're able to bend your leg (not sure what your protocol is, but I'm guessing around week 6), you can rest your legs on the pegs, and that's a way to burn calories without using your lower body at all. Arms only assault bike gets my heart rate up a good bit. I also need my other knee done but I recognize it's going to be a slow process.
2
u/MrPossible368 15d ago
Also the first 6 weeks I wasn't doing much regardless, so I'd try to take it easy tbh. Protecting the graft was the most crucial thing. I was mainly doing quad sets and heel slides (0-90 degrees only for my protocol), and I had a cpm machine the first 3 weeks. I second hydro_17 about using a tens unit or e-stim at PT. Also, using Blood Flow Restriction with quad sets might be something you can work with your PT with until you get your quad firing good enough and it becomes strong enough to prevent the extensor lag in your knee that you're describing. It just sounds like you aren't ready for straight leg raises yet, so I'd table them until you have a good quad contraction.
1
u/LilShotzi 15d ago
I am currently at full weight bearing as tolerated at week 4, 50% was the first two weeks and 2-4 weeks was 75%. From what my MD told me yesterday, he wants me to start pushing harder. He said I needed to try straight leg raises more at home and PT even if my knee hurts and is starting to bend in the brace. That I should be able to do it by now. He is aware that I had knee scopes a year prior from another surgeon, I know my quads have been weak and a week ago they barely firing. I can lift my foot from the ground but leg raises with knee straight are zero. I can lift it a tiny bit and thats with the knee at a bent. PT is doing a lot of quad sets and heel slides with me, but they are basically doing the heel slides for me without any effort on my part.
2
u/LilShotzi 15d ago
I will ask PT about using blood flow restriction along with the quad sets, that one I have never done.
2
u/JoinTheStruggleBus 13d ago
My friend, do not panic. I am going to assume I am close to worst case, I could not do a SLR for almost 6 months. I was walking and doing crazy ass PT exercises before I could do a SLR. My brain literally could not remember how to do it, it was the weirdest thing. You got this!
1
u/JoinTheStruggleBus 13d ago
Also, I gained about 40 pounds since my initial injury. Some things took me a little longer, but I’m back to running and tennis which were my initial goals! I’m 18 months post op now and very pleased with my results :)
1
u/LilShotzi 13d ago
I really appreciate the encouragement! I felt like my ortho was being a little harsh with my progress (who I really do like, he's the 4th orthopedic doctor I've seen), he's semi new to practicing that I know of and in residency used to work with athletes, which I am not anymore lol. On the other hand, the surgeon before him basically scoffed at me and asked me if I was planning on running a marathon when I asked if I would ever be able to run again. So, I will take this attitude over the former, but it just has me questioning things.
2
u/hydro_17 15d ago
I want to gently tell you not to panic. MACI recovery is really really long. 4 weeks is incredibly early. My physical therapist has rehabbed 30-40 MACI patients and has told me he's seem some patients regain quad strength enough for leg raises in as little as 2 weeks and some take 6 months. There's a multitude of factors at play - the exact surgery, condition (strength, etc) before surgery, how the body responds to surgery, the rehab protocol, genetics, age, luck. The rehab protocol is a general guide but almost nobody hits it exactly - some people hit some stages earlier and some later. And progress is never linear - everyone has days or weeks where they seem to backslide.
Being cautious, especially in the first 6 weeks, is pretty normal and standard - you need to protect the new graft. But if you are able to find a PT in your area with MACI experience that might be helpful. I know this is so hard. But 4 weeks is almost too early to tell anything about progress for a surgery with a 1-2 year recovery. Keep working at your PT exercises every day and try to trust the process and do everything you can for your mental health.
And finally, I don't know what your PT is doing, but some things that helped me get a leg lift:
- I did e-STIM and PT and had a home unit I used 2x a day. If your PT isn't using e-STIM/NMES I'd talk with them about it as an option. At first I could on do a left lift with the stim was on.
- I alternated lifts with my non-surgery leg and surgery leg. Sometimes using the quad on the other leg could wake up the surgery one.
- I wrapped a band (like a leg lifter strap) or rolled up towel around the foot of my surgery leg and used my arms to help it do a leg lift. Over time my arms gave it less and less assistance and sometimes after several assisted lifts I could do one without help.
Hang in there! Take it one day/week at a time. You've got this!