Episode 229 | From Stuck to Seen: How Advocating Changed This ACL Rehab Trajectory

What is up y’all? Today, I’ve got a super interesting one. I wanted to share a story of an ACLer and a case of mine with a 14-year-old female, an ACL athlete I’ve been working with. It’s been a complex one, to say the least, especially for a 14-year-old going through this process. It’s a lot for anyone, but especially in development years, like middle school and high school. Also, you might hear some thunder in the background, a little bit of ambiance. Her parents have been involved and awesome, which makes handling a complex case of a 14-year-old going through an ACL process. A little easier for me because they have a great support system. And I’ll share why it is so important as we talk about it. 

Here is the backstory. We started working together during prehab before she had surgery. We hit all the prehab-focused goals and got her ready for surgery. She got a quad graft from a surgeon. We aimed for post-op goals, which were all focused on a quiet knee, keeping it super simple because she also had school in the mix. Something that was just really challenging from the get-go was getting an extension. How many of you guys can relate? 

And then getting her quads to wake up and getting her into that extension. Another thing super common for ACLers—waking up the quads, getting your knee extension. For some of you, it might be flexion, some of you it might be both, but getting that good heel pop, terminal hyperextended knee extension—super common. Especially with pain and swelling can make that quad shut down and also not want to activate, and then you’re feeling pain, you’re feeling apprehension with it. The feel of it, that mind muscle connection is not feeling there. And don’t get me wrong, I can relate to this with my ACLs and trying to get my quads to wake up through this. And I have a scar, especially on my right side, where they put my femoral nerve block. And I remember why I can’t wake up my quads. This is something super common. 

With her, we had a super high focus on getting this. This is always our number one goal: let’s get hyperextension, let’s get our quads awake. If we can get that, I’m feeling really solid about how we’re starting off. I’m pulling out all the different ways for us to try and tackle it and getting her extension to really get there. It progressed, and we reached a gray area. It was around zero degrees, neutral, not into hyperextension. She has hyperextension of roughly five degrees, so we still had a little bit more to go. It could give or take, depending on the day. She was also doing a lot of walking, especially with school and being on her feet, and she just had an overall sensitive knee. Therefore, it responded very quickly to swelling, to stress, and especially with that knee being more vertical on it and more step count. And sometimes we’d maybe get a little bit of hyperextension on a day or two, depending on how hard it was worked on, but it probably fluctuated around that zero degrees. Not fully hyperextended like we wanted. This was two to three months after consistent hard work, really trying to keep it simple, be able to progress some other areas of the rehab process, manage being on her knee a lot, and the swelling and the pain, and also just getting her range of motion dialed in, getting her quads to wake up more and more. But that extension just ebbed and flowed a little bit. 

My gut was telling me something wasn’t adding up. But it was in this gray area, not symptomatic with the extension. It wasn’t like she had this clunk or these weird, like typical issues with maybe some scar tissue, but I just had this gut feeling about it. And this stuff sadly comes to me now just after seeing so many ACLers. But with that, it just ebbed and flowed with where she was. I wanted to make sure I give her a fair shot because some people, it just can take time. Some people may get it immediately, and then there are some people who I’ve seen it just come over, months and months of working on it, and it could just be because of the injury. And then going into surgery pretty quickly. It could be because of just the surgery itself, and the way the knee responded to it, and the healing, so there are a lot of factors. Sometimes it just takes time. Maybe someone didn’t do as much of their diligence as they said they were doing. Therefore,  they start to realize it’s a problem and they get on it. Lots of things that play into this. 

But with that said, I just want to make sure we give a fair shot, and we don’t want to rush to anything, especially if someone is sitting somewhere around zero degrees, it’s in that gray area. Yes, if it’s 20 degrees of flexion or 10 degrees and she’s still needing 15 more degrees of extension, then that’s a problem. But when we start hitting around zero, it gets in this really weird gray area, especially with medical providers in this, and I’ll share more about that. With a quad graft, this can even take a little bit more time in getting into end-range hyperextension. 

She saw her surgeon at the three-month mark, and the surgeon said it looked great. They looked at it, looked at the knee, did their normal five-minute thing, and was like, it looked great. And then I continued to have my internal concerns. I was going to wait to see what the surgeon said, but I still have my internal concerns about the knee. And we just continued to work on the things that we could. And once we did get beyond that three-month mark, I felt like it plateaued, even though the surgeon said it looked great and she said she thought it was even better.

In all honesty, I’m sure some of you can relate to this. This was her wanting it to be better than it was. Again, not a terrible extension, but I could tell it was impacting her ability to contract her quads and sometimes it carried over into her gait where she might limp here or there, or walk with a bent knee. I shared my concern with her parents, privately, and not in front of her. That was super important to me, especially given her age and where she’s at. And there had already been many sessions where we had to talk through things and some breakdowns and some tears, and we have to navigate this super carefully. This isn’t just someone who can tackle all this. And their life has been uprooted as a 14-year-old. It sucks for someone who’s in their 20s and 30s. And I’m not saying that takes away from any of you who might be older who have this. But as we get older, at least we can deal with problems a little bit better, hopefully. When we’re younger, it’s harder to process things like this. When it happens, when you’re 14, it’s something that we want to be very intentional and very delicate with. I wanted to make sure I talked to the parents, they’re informed and know where my head’s at with these things, and I wanted to share that I think she has a cyclops lesion, and I wanted to get in front of it. And after working with the ACLer so much over the years, I’ve done episodes on cyclops lesions. And our team, I think personally, that the cyclops lesions, the numbers are underestimating, the number of actual cyclops or scar tissue that people deal with whenever they’re post-op ACL. This is just me throwing this out there, and I’m just speaking from anecdote. I don’t have any research to back this up. This is just exposure to be completely honest, and being in this space. But there is something about quad tendon grafts and the relationship of scar tissue laying down a little bit easier, and maybe a cyclops forming alongside of it.

I don’t know that there is any connection with this. There may be, and I hope that there’s future research on this. I hope I’m wrong. But with that said, I just see a relationship. If those of you have a quad tendon, which I guarantee you a lot of you are listening, don’t go running and saying I got a cyclops. I’ve seen plenty of quad tendons that don’t have cyclops. But with that said, I can see this more associated with that quad tendon graft. And our team as a whole has seen this a little bit more with that quad tendon graft. 

Now, with that said, that is something that I just wanted to make sure that I shared with the parents. If I can be transparent with all of you for a second, we find that sometimes ACLers get stuck and suspect a cyclops lesion. There’s no way to prove it besides an MRI. And oftentimes, surgeons are reluctant to do anything about it, especially if that extension is close to zero. It’s not so aggressively obvious where they are walking with a very bent knee, like I said, plus 10 degrees, plus 15 degrees. It’s around zero, but it is not hyperextension, and it is not matching the other side. And what I see a lot of times is that they just refuse, or they’re just very reluctant to order an MRI to confirm it, even though they’re super quick for an MRI to diagnose an ACL tear, but not for a potential problem or complication, unless it’s gone on long enough. And sometimes, the reasoning is like, why do an unnecessary image? And I’m like, man, like if this could save this person three months of just like wasting their time whenever they’re running into this issue, I think it’s well warranted. And if anything, they get the MRI and it comes back negative. That’s great. That’s information for us to move forward. I don’t understand it. And I think it’s more so that they just don’t want anything to impact their overall process. And yeah, I get situations where people come in suspecting things, and maybe it isn’t there. But when this has been worked on consistently and it’s not adding up, let’s try to do what we can to get more information.

And the thing is that it’s a gray area, and some surgeons think zero is great. They think you don’t need hyperextension. It’s not. And I’ll stand by this forever, given that our knees are naturally some hyperextension, and humans are naturally born and built this way. If you extend your elbows, you have hyperextension. If you extend your knees, you have some hyperextension. This is something that I’m not going to waver from, and zero is not okay. We want to match the uninvolved side, unless you’re a very hypermobile person, meaning you get to minus 15, minus 20 degrees. You have a different genetic composition, or more so of your connective tissue. You’re technically a more just hypermobile person, so maybe there is room there. But for 90% of people, you’re probably not going to need to deal with it. And you have a normal hyperextension, which is typically around minus five to minus 10. 

Why not restore it back? And there’s research to show problems in quad strength and long-term osteoarthritis if your knee extension is not restored. They want to assume it is not their surgery, they being the surgeons, or their graft that’s the issue, and that’s not it. We’re not here to call out and say, hey, you did a bad job in the surgery, and this is your problem. It’s just that there is a physical block, and no one could have controlled this. It just happened. A lot of scar tissue, a brick wall that is stopping this knee from going any further. The only way to improve it is to remove it and clean it out via surgery. I just want to stop here and say, I’m not here to say this, that it’s all surgeons.

But working with ACLERs in this space for a pretty decent chunk now, all over the world. And if you guys have followed me at this point, 229 weeks straight of this podcast and episode without expecting anything back from you. I’m here to just share this because it means so much to me. And because this is the honest to god truth of what exists in this space, because I just don’t want you to fall through what cracks I had to fall through. The reason why I may have had my second ACL injury and why these athletes are going on to have their lives completely uprooted and messed up because of this injury. And yeah, we can’t prevent the first ACL injury potentially. But we sure as hell can do something about the second one. I will stand by that, and that’s where good rehab, good surgical processes, and good teams are going to be able to get you back to what you want to do, but then also prevent and minimize the risk of that second ACL or hopefully third ACL.

And so with saying this, I’m not saying all surgeons do this, but this is something I see as a pattern, and so consistent, and with working with ACLers all over the world, there seems to be resistance to it more often than not. So that’s why we have to advocate for ourselves, and hopefully, as a provider to our athletes, we can advocate for you. Coming back to this client’s case, to help bring this around, I shared it with her parents and discussed the next steps. I told them, look like I have this feeling that it’s a cyclops lesion. It’s not consistent with all the cyclops lesion, clunking, regressions, and all that. But it’s something that I think could be there, and I want to get in front of this. I shared with them the next steps, and I will often share it with the surgeon and the team, but this was a case where the surgeon wasn’t as receptive.

In situations like this, sometimes we just have to empower the patient, their parents, maybe if they’re involved, to take matters into their own hands. Because a lot of times they’ll listen a little bit more because you are the patient, versus if you are another medical provider. Sadly, in this world with just a lot of egos, time limitations, and other stakeholders involved that unless you’re the elite of the elite, it can often just be disregarded. Therefore, we have to make sure our patients feel like they can advocate for themselves and feel educated to voice their opinions. They messaged the surgeon’s office and scheduled a visit to evaluate the knee right after I shared that with them. After the visit with the surgeon, the mom of the athlete emailed me and then called me to say that the surgeon was visibly pissed off. I was like, what? He said he didn’t think there was a problem and that since this thought has been put in her head, she thinks this won’t be fixed until there’s something done about it, until it’s cleaned out. And then he said that there are too many cooks in the kitchen. You just need to keep going with your rehab process and just not worry about that.

But what’s funny is that I’m streamlining this entire rehab for her. And so there aren’t too many cooks in the kitchen. It’s a very cohesive and dialed-in rehab process, and what she’s getting with this is more than most. And the mom said she had to redirect the surgeon to focus on her daughter and the problem, versus complaining about these cooks in the kitchen, and the fact that we put this thought in her head. The thing that just baffled me the most was the next part. The surgeon evaluated her knee. After you said all that. And said, yes, it does seem to look like she has some scar tissue and restriction in extension. He said he didn’t even need to get an MRI for her and to schedule the cleanup because he felt confident she had scar tissue. And as the mom shared this with me, I’m just shocked by this, honestly. I get that he disagreed with me because he did think it was wrong, and that she didn’t have scar tissue or cyclops, and her extension was fine. But in that visit, he agreed that she had a cyclops, she had scar tissue, her extension was not looking right, so why say what he did, and who knows, honestly. This ACLer had the clean-out procedure the week after, and they found a massive cyclops lesion in front of her ACL and scar tissue. And don’t get me wrong, y’all, I’m not here to say I’m right, he’s wrong. We just came to this conclusion: Hey, there’s a problem when we just need further details. And I wasn’t even saying, Hey, she needs a clean out. We just need the next step of, let’s get some more information. And maybe that’s an MRI to rule out that there’s a cyclops. That’s all I’m asking for, just to make sure we are not ramming our heads into the wall, and she feels like she’s working so hard, yet not making the progress we want. We’re seeing that translate into her strength, her rehab, and how her knee feels. Whenever you have a 14-year-old walking around with a slightly bent knee, and it just doesn’t feel great, and it limps a little bit, that’s not cool. No one wants to walk around like that, especially not in middle school and high school. Therefore, let’s try and find some solutions and get more information. And that’s all the goal was. 

Here, she had that pre-cleanup procedure. They got the cyclops out in the scar tissue, and now she’s got her hyperextension back, and we’re working on more strength and fun stuff in progressing her rehab. So what would have happened had she not gone and had this looked out? And this is something that’s always interesting to just think about. What would’ve happened if she just kept working at it after that three-month mark? And typically, the next surgeon visit isn’t until the six-month mark? She would’ve kept working on it. It would not have gotten better, and the problem she was dealing with would’ve persisted. And I’ve seen this where people come in to work with us six months out, nine months out. We’ve had people a year out, even a year and a half out. They’re dealing with a problem similar to this that never got caught or never got addressed, and they’re still dealing with the issues. And it makes me sad because no one ever thought to just be like, hey, let’s look a little deeper. Let’s listen to your story, let’s evaluate this knee, let’s track and see does it progresses at all? What helps it? What doesn’t? And then let’s just create this trend, and understand what this picture looks like, and what is going to be the best solution? And once addressed, they can move forward. It’s an opportunity cost, y’all. When someone doesn’t have this addressed early, it’s an opportunity cost. If you think about us working for another two to three months more and then having the same problem finally evaluated, let’s say at six months or seven months, that’s way too long. The tough part is that this athlete goes through this feeling of almost being gaslit, like a bit. They think that they’re crazy, and they’re being told that their extension is fine when they know it doesn’t feel right. They’re working on it, and then they’re told it’s fine. But then, they know it doesn’t feel right, and then, it is just this kind of messy situation.

And what’s important here is that she had the support system to help her. She had her parents to make sure she had a voice, especially as a minor. I also provided a step-by-step on how to present this, given that it was a challenging thing to communicate to the surgeon myself. And this is the reality of the healthcare space—egos, time constraints, money, outcomes, et cetera. It’s tough. And so what is my point here? You’re like, cool, this is not the best story. You have gone on for 20 minutes. Now, what’s the point? My point here is that we have to be our advocates. It’s so important for you to make sure you voice things for yourself. In today’s healthcare, you don’t have a choice, and the system is no matter where you are. I can share countless other stories of similar situations where people didn’t advocate for themselves, and they’re not only lost. They have lost time. They spin their wheels feeling stuck, but also feel crazy for it.

They have been “graduated” from PT, or they’ve been cleared, but they don’t feel like they should be ready to go. They know that they feel like they’re at 50% or 60% or 70%. Heck, it might be even 30 or 40%. And the thing is, they’ve been told by the professionals they’re working with that, oh, it’s good or you’re good, just like work into it. The thing is that it’s not fair to you as the ACLer, and it makes me sad because you deserve better, and it’s just not fair. We have to be our own advocates in this process. Now, does this mean that if you don’t have the extension to run to your surgeon and say that you have a cyclops? No, please do not think that is your number one problem, or go chasing all these forums and thinking that’s what you have.

The thing is that you need a team and a support system you can trust. You have your people, you may have your sports team and coaches. You hopefully have a rehab provider, and an ortho or surgeon is a part of this team. You want to make sure this team is listening to you and you’re not feeling like another part of a conveyor belt. Your PT is the one spending the most time with you. Your physical therapist, your rehab provider, they’re the ones to catch it and should be the ones to catch it and be able to make sure you can feel educated about where you are at all times and what’s ahead. In a case like this, being your own advocate and helping to empower you to advocate for yourself. If we don’t do it, no one else will. That’s why having an incredible ACL team and support system is so key, as this athlete did. It will make or break the difference in your overall outcomes, but the journey itself is just super challenging. If you feel like you don’t have that, please make a change. Don’t wait. Don’t hope it gets better. Don’t leave it a chance. That’s an opportunity cost. You can always get a second, third, fourth opinion. There are so many credible providers in the ACL rehab world, and now geography is no longer a limitation. Because of technology, you can access elite-level care no matter where you are.

We work with people all over the world, and so do other people in this space who are doing great work. So follow your gut. Worst case, it’s nothing. Best case? You’ve found it. It’s something that you could have prevented a lot of time loss and opportunity cost. This is something where I really want you to be able to just be in this driver’s seat, feel in control, be your own advocate, and make sure you have the right team in your corner. Your physical therapist will make or break your ACL rehab process, and I stand by that.

I hope that this was helpful, y’all. This is just something that was weighing on my heart to share a story. I’m sure many of you can relate, maybe people that— Phil, you haven’t been heard. Therefore, you just want to make sure you are working with people who hear you and who understand you, who empower you, and who make you feel like you know where you are at all times in this process. And if they don’t have an answer, they’re going to look for it and find the best solution for you. That is what you deserve. I don’t care where you live, what you do, what age you are, what sport you do, or what activity you do; you deserve elite-level care because that is what good healthcare is, and it is more accessible now than ever. If you don’t feel like you have that, then make a change. Don’t let the system be the default for you. 

I promise you, when you look back, you’ll be like, I’m so glad I made that change. I always come back to choosing your hard. You could either choose a hard one now, all these changes, maybe it’s an investment, maybe it’s a change of provider. And maybe it’s a change of just going to a different clinic or a PT within the clinic. Maybe it’s changing things altogether. But it’s a change. And that’s a hard thing to do. Maybe it’s a different surgeon, or maybe it is going through a different procedure that you need to have done right. But it’s choosing your hard now versus choosing the hard later, which I promise you, it’ll be worse later.

And that’s the thing that you don’t want to wait for. If it’s comfortable now and you have to choose a hard one later, it’s going to be much harder later. Make that change now. Be your own advocate. Please reach out if you need anything. We are here to help.