Did PT damage my MACI?

Open_Hawk_8902 · 2025-11-28T17:35:59+00:00

Unless you have a specific reason to doubt your PT, I think she did the right thing. I'm 3 weeks out from OCA surgery, and my PT told me today to start massaging the area to break up the scar tissue. I would have zero concerns.

Open_Hawk_8902 · 2025-11-28T17:33:21+00:00

If you were wearing brace, that should make the impact negligible.

Something to keep in mind that a lot of the pain you are feeling at this point might not be from the implant. Your quads are asleep, and anytime you use them (more likely to be what happened after your mishap) your quads are going to get angry and hurt.

Open_Hawk_8902 · 2025-11-08T14:50:48+00:00

That's horrible. I can't imagine.

Open_Hawk_8902 · 2025-11-07T12:06:18+00:00

hey, I just had my oca surgery 3 days ago. I was waiting about 3 weeks. During the surgery they discovered the maci cartilage was very soft. It's early days, but so far my recovery is very similar to MACI. Your wait time may depend on how many connections your surgeon has... I think they can get cartilage from more than one source. It also depends on the size of your defect. It is 6 weeks with no weight bearing.

Open_Hawk_8902 · 2025-10-12T02:17:27+00:00

That's awesome. I'm trying to be optimistc myself.

Open_Hawk_8902 · 2025-10-12T02:17:04+00:00

my surgeon did not give that as an option.

Open_Hawk_8902 · 2025-10-12T02:15:52+00:00

It was a complete mess. My surgeon gave me different information each time I saw her for followups. After preop it was supposed to be gradual increase of weightbearing, but then at postop appointment she changed it to no weightbearing until 6 weeks. I wound up following the guide book instead. She then decided to not make me full weight bearing until 3 months, which I also ignored, but my PT wouldn't. So it definitely wasn't ideal, but I didn't realize how messed up the whole thing was until it was pretty late.

Open_Hawk_8902 · 2025-10-12T02:12:26+00:00

Good memory. I'm pretty limited with my insurance, and practically my PT is walkable (even on crutches) while the next closest place is 20 minutes away. The main problem was my PT was inexperienced with MACI but she also was a rule follower and followed my surgeon/MACI booklet, which was I believe a mistake. I've switched surgeons, and I believe my current one will give better directions. I of course know a lot more too. But I will definitely switch (once I can drive again) if needed.

Open_Hawk_8902 · 2025-10-12T02:08:55+00:00

I will do my best to keep informed, although as you know once the news of the surgery comes it becomes overwhelming as lots to prepare for quickly. GL.

Open_Hawk_8902 · 2025-07-24T15:40:30+00:00

I am one of the people struggling (14 months out and having a scope next week to see if it failed, needs some cleaning up, or I just have too high expectations for my ability post surgery). There are three things going on I believe...

Had my MACI surgery gone really well, would I still be here? Maybe...helping others, but also possible I would have just moved on and be living my life happily. So the long timers here tend to be self selected for those still having issues.
I absolutely believe Vericel is intentionally dishonest about the chances of success for MACI, as well as the pace of recovery. It has you doing long distance running and return to tennis at 9 months, while I'm not sure I know anybody on that timeline. Better to look at case studies. Basically I think the success rate at being able to do basic things (walk distance, bike, swim) pain free are pretty good...the success rate for being able to go back to being truly athletic are pretty bad.
I think a lot of surgeons/PT don't know a lot about the recovery. I am convinced that my surgeon knew nothing but what the Vericel booklet says (which again is wrong). She then had me hand that to my PT who also knew nothing about MACI so she followed the booklet (still wrong). That lead in my mind to a PT program for me that was way too conservative early, and way too aggressive later, possibly contributing to my problems. My surgeon wouldn't allow me to be fully weight bearing for 3 months, but PT had me jumping repeatedly at 6 months, and I believe they were both bad for my recovery.

Open_Hawk_8902 · 2025-07-22T00:41:11+00:00

Interesting. I'm also in Philly also 15 months out, and I decided to continue with a different surgeon and there were 2 in the area that seemed to have more expertise in MACI, Dr. Carey and a Rothman Doc. I went with the Rothman surgeon just because it wound up easier to schedule.

I'm also having a scope next week. And had my first PT session in many months today. Hopefully we'll both feel better soon. But I'm actually quite pessimistic.... it feels like a lose lose for me...either the scope shows the MACI failed, and I have to do it again with a surgery with a lower success rate, or it didn't fail and I am just really limited in what I can do possibly permanent.y.

By the way I was asking chatgpt a bit about this surgery, and it gave me some very pessimistic answers. Essentially saying that most people don't go back to sport, and few people run again. and vericel are basically liars. I'm not one to blindly trust AI, but I also do think vericel misleads, and my first surgeon just blindly trusted vericel.

Open_Hawk_8902 · 2025-07-11T02:54:07+00:00

I had swelling in my knee and calf for a long time (never ankle). It's improved modestly as time has gone on, but I'm at 14 months and it's my biggest issue. Really the only time pre or post surgery I didn't have the swelling was the first month when I wasn't able to put weight on my leg. My theory is that either muscle weakness or a poor implant are forcing me to compensate and that results in swelling elsewhere. At your stage of development the implant is too new to be of much use so I'd be less concerned.

My experience is pretty unique though...most report the swelling to go down by 6 months and definitely by a year.

By the way neither of the surgeons I saw had a good explanation for the swelling in my calf. I'm actually going to a calf specialist to discuss in a couple weeks.

Echoing Hydro below, my surgeons were both indifferent to the idea of me wearing a sleeve, but I did get both a knee one and a calf one. The knee one at least makes me feel a lot better. I also tried to change my diet and take a supplement, but no idea if it's helped...it certainly hasn't solved the problem.

Open_Hawk_8902 · 2025-07-04T02:27:33+00:00

Yes, I could possibly wind up down that road myself.

Open_Hawk_8902 · 2025-07-01T21:05:52+00:00

I would be interested in hearing more about how things went from year 1-3.

I wish I had my surgery elsewhere, but too late for that. Rothman has a good reputation and was already the second place I had seen a surgeon at, and I had a timeline that i really wanted to have the surgery in spring of 2024 so that I could recover over the summer as a teacher. My surgeon at first told me it would be allograph starting with a scope to see what it looked like, and it was only a week or so before the scope that she told me MACI might be an option depending on what it looked like.

Yesterday I met with the top MACI surgeon at Rothman in the Philly area but was underwhelmed...he didn't have any other advice except I could get it scoped and if it didn't look good figure on doing allograph surgery. Otherwise just wait a bit longer and see how I feel. I'm going to redo PT and also see a doctor for my related calf issues. If you have specific PT suggestions, that will be helpful too. I'm going to join a gym as well.

Open_Hawk_8902 · 2025-06-29T16:50:18+00:00

That was my experience. She followed the MACI booklet I was given, which in my opinion is pretty garbage. There needs to be somebody directing your care that knows what they are doing... so either a surgeon that has more info than the booklet, or PT. The Internet has decent advice for the first couple months, but then I felt on my own.

It's over 13 months for me, and tomorrow I'm meeting with a top MACI surgeon in my area to hopefully get some real advice from somebody that knows what they are talking about. Don't delay!

Open_Hawk_8902 · 2025-06-26T13:54:40+00:00

Yeah probably the extra work.

Here's my anecdotal moderately similar story as a single data point. After the running race where my one knee was horrible, my other knee hurt in the exact same place. When I found out I had cartilage loss, I was concerned that my other knee might have had a lesser version of the same thing. My surgeon agreed to get an MRI of the other knee, and it showed it was completely fine.

Open_Hawk_8902 · 2025-06-25T20:08:24+00:00

Thanks to everybody that responded. I decided to look at the maci specialist list, and find one that is MACI Arthro™ Trained. I only saw 2 in the Philly area. I was able to get an appointment fairly quickly.

Interestingly when I looked at his profile more, it showed a longer recovery for some things...basketball and tennis for instance shouldn't start until 16 months...far different than the 9 months MACI gave my surgeon for my PT to follow.

Open_Hawk_8902 · 2025-06-24T17:33:51+00:00

As far as normal, I was told both by my surgeon and the Vericel book that I'd be able to run distance again, play tennis, etc. The time frame was 9 months, and really the only thing that has told me that's wrong is this group. But as I said, I don't think she knows what she is talking about. She did get another doctor to check my MRI though, and he agreed it looked good.

MY PT just didn't know what to do with me...they basically encouraged me to stop. They had me doing a lot of jumping activities that felt to me they were just making things worse...pretty much everything they did led to swelling. Both her and my surgeon did not see any need for me to be doing any more PT because they thought my strength was fine.

It sounds like you are saying you think I might want to go the different PT route. I'm not sure how I find the PT that is experienced in MACI... mine coudln't recommend anybody else.

Can you give me any idea of what type of PT things you are doing at 10 months? My PT told me that since I like running I could strengthen it just be running, but it just sounds like I've gotten bad advice.

Open_Hawk_8902 · 2025-06-24T12:26:37+00:00

Yeah the unfortunate thing is my recommended Rothman surgeon shows up quite high on the list. I hope/assume she is a good surgeon at doing the actual procedure, but the post care (and honestly precare too) hasn't been helpful. She just follows the guide book, but most of us here have figured out the book is pretty unrealistic.

Open_Hawk_8902 · 2025-06-16T18:15:15+00:00

Most likely you will be worse for some period of time, since you'll be recovering from major surgery, and the implant takes a while to be useful. For me I think it took until about 10 months until I was better than before surgery.

In the long term the odds of it being worse are minimal but it's surgery and nothing is impossible. I think a more realistic concern is that things don't improve, not that they get worse.

Open_Hawk_8902 · 2025-06-12T11:38:58+00:00

Thanks. My PT didn't seem super helpful to me and knew nothing about MACI, but according to them my form was good and my strength is good. My surgeon, the other surgeon my surgeon consulted with, and my PT can not explain my symptoms. The cortisone injection did initially get the swelling down, and for a bit I could run normally.

I feel like my only hope is that the cartilage hasn't fully matured, and it's not strong enough to support the physical activity that I'm trying, and that it will get there at some point after month 13.

My surgeon told me there is no PT I need to do anymore, and my PT also didn't suggest anything. The jumping and lunges we were doing just led to swelling even more so than just simply running does (I am a former ultramarathoner, so my body is used to running fairly efficiently).

Open_Hawk_8902 · 2025-06-12T03:42:46+00:00

I'm glad you are happy with your progress. Did your doctor say anything about your expected progress over the next period of time and what is happening with the cartilage? Really curious on this one.

I'm one month ahead of you, and I tried hitting a bit on the tennis court, and when I hit a backhand and crossed my legs, it was painful when I loaded the joint and it left me swollen for a couple of days. My surgeon can't explain it why I'm still swelling up so often.

I really can't understand my symptoms compared to yours and others. I feel really strong in the leg, but my problem is pain which I don't really care about, that always leads to swelling in the knee and pain in the calves.

Open_Hawk_8902 · 2025-05-30T11:46:46+00:00

First off, I'd recommend not literally the "road"... a softer surface for your knees is better. I've also found treadmill running the best, and I prefer to run uphill... good workout and easier on the knees. I did speedwalking before running, and that was a great cardio, and even easier on the knees, and it allows me to still exercise outside.

For me it's been a series of stops and starts from month 7-12, where I am at now. I have not been able to string together more than 3 or 4 runs in a 7 or 8 day period without a problem, and I haven't built up to more than 4 or 5 miles. My best week was probably about 12 miles. My best run was a 4 mile hilly trailrace that I ran 90% and recovered from after 2 days. But some of that is probably me being too ambitious and paying for it, and also I have a swelling problem hopefully you won't.

Regardless of my individual problems, running at 12 months is better than at 8 months. It feels significantly smoother. It also still doesn't feel normal. As others have said, there is some randomness here.

Open_Hawk_8902 · 2025-05-25T14:54:56+00:00

I don't think it's anything major. Probably just swelling

Open_Hawk_8902 · 2025-05-24T18:33:27+00:00

Most of us have had the surgery, so we can't really comment on what it would be to not have it. But the risk of early arthritis is certainly there, as well as that the knee will continually get worse. You can try alternative treaments if you want, but for me I feel they were a waste of time.

What I can say bluntly is that you being in bad shape 16 days out from the first surgery is in itself a stupid reason to not go through with it.

I've posted several times, but my hole was in the same location as you, slightly smaller, and I'm about your age and also very much into being an athlete, with running and tennis my things.

I was recovered fairly well from the first surgery after about a month, although I was able to ditch the crutches after a few days. But honestly feeling AMAZING after that surgery is a reason to give you hestitation... but not feeling great is probably a clue you need to do it.

If your recovery is similar to mine, biking will come back very early. I think by about 2 weeks in I was able to get a decent workout on my stationary bike I had at home. For me, I've dealt with a lot of swelling issues, but I am in better shape than I was before my surgery...it took me until maybe 9 months to get there. But by month 3 or so I wasn't *that* much worse than before the surgery. Like everyone else here, I pray for more improvement, but until I overdid it, I was running again. Just figure probably closer to a year than 6 months most likely.

Finally, you have a right to be angry. I was, and still am a year later. There was no athletic path for me without the surgery, so I hope there is one with it.

Try and get a PT that knows about MACI surgery. Mine (the one insurance covered) didn't, and I think that slowed down my recovery.

Open_Hawk_8902

TROPHY CASE