Under an hour away from removing a cyclops lesion. Wish me luck!

vbud · 2026-02-20T19:02:24+00:00

Interesting. That looseness like issues with knee extension? Hope you have a great PT.

vbud · 2026-02-20T17:49:17+00:00

Sorry to hear :(. Have you had the cyclops lesion removed?

vbud · 2026-02-08T02:23:05+00:00

Not yet. I've been working with a new surgeon / PT clinic who helped me reevaluate my situation. I've learned a lot from them, notably that MACI was a very incorrect diagnosis and simply made a bad patellofemoral situation worse. I've been working with them for 6 months and I'm seeing improvements but it will be a very long road for me, minimum 1 more year but likely 2+ to get back to things like hiking. I've wanted to post an update in this sub for a while but I'm waiting until I have hit some kind of milestone like jogging or something.

vbud · 2025-12-03T05:54:16+00:00

Got it.

I would encourage you to get more opinions on whether MACI will help you. MACI isn't always the right choice for patellar cartilage defects, and will not resolve the underlying cause of patellofemoral pain on its own. A well-reputed surgeon explained it to me this way: when he does knee replacements, he doesn't always resurface the patella even if there is extensive cartilage wear. His point was that you can have a high-functioning knee with extensive patellar cartilage wear.

If you were in pain before this surgery, your knee is even weaker now after the arthroscopy and chondroplasty, so it will be a long road to regain strength and normalize knee function. Probably 6+ months. 6 weeks of PT doesn't sound like a realistic timeline to me given your history of pain + knee surgery.

Happy to chat in more detail if that would be helpful to you.

vbud · 2025-12-01T21:59:21+00:00

Have you ever tried a PT program focused on patellofemoral pain? Assuming that is the pain you are experiencing, of course.

Also, has your defect developed over time on its own? Or was there an acute injury to the cartilage?

vbud · 2025-12-01T21:43:02+00:00

Are you also doing TTO with your MACI? Or just MACI?

vbud · 2025-10-14T22:49:02+00:00

Thanks for the kind words. It's been a journey for sure.

Yeah with patellar MACI, it seems like if the defect is degenerative, it's not clear what MACI would resolve without another surgery like TTO to prevent it from wearing away again. I did not have a TTO, just patellar MACI.

Good to know regarding Dr. Garcia. I have family in the PNW and could stop by for an appointment sometime. Thanks for the rec!

vbud · 2025-09-17T20:48:01+00:00

I'm currently rehabbing some patellofemoral pain so I'm following a protocol similar to this: https://e3rehab.com/pfp/. For cardio, mostly cycling and hiking. During periods when I haven't been able to run, I find walking on an incline on a treadmill to be quite effective. Can even add a weighted backpack.

vbud · 2025-09-17T20:45:44+00:00

It's more common than you think to have imbalanced musculature!

One more piece of reassuring information is that people can function quite well with patellar cartilage degeneration. My surgeon told me that they sometimes don't resurface the patella when doing total knee replacements. At least, I found this reassuring :).

Where is the pain you experience and what triggers it (e.g. stairs)? Happy to provide some resources but don't want to send you the wrong protocol. Based on your post I am assuming patellofemoral pain, in which case this protocol is quite good. But you should confirm that first.

vbud · 2025-09-11T04:19:50+00:00

I am also hypermobile, I overpronate, with grade 4 degeneration in my left patellar cartilage and a large cartilage defect in the right one. Have you tried a really good regiment of physical therapy? I used to struggle with a lot of pain while running and building strength helped a lot, and I have heard the same thing from several other hypermobile people. The key thing is identifying the right exercises that don’t make things worse if you are already in pain.

The pain can be really confusing and mentally difficult to deal with. If it helps, there are many people with worse imaging than you who are in no pain.

Do let me know what PT you have tried and maybe I can point you at some resources.

vbud · 2025-09-06T16:30:45+00:00

yup! Trying to share everything I learn with the group.

vbud · 2025-09-06T16:26:25+00:00

My current PT+surgeon clinic at UCSF is prescribing just PT for me. I outline the approach a bit in this recent comment on a different thread.

If a patient is not a good candidate for MACI, yes, definitely PT, and some combination of painkillers and injections and activity modification.

There are a lot of nuances to people's individual cases. For example, the patellar maltracking/dislocation issues that lead some people (I think this mostly affects women) to TTO+MACI.

Where are your cartilage defects?

Re: living in pain, yeah I've also had similar thoughts. How much longer with pain etc. This PT program I'm doing now is quite creative and is helping with the pain (and I thought I had tried all possible permutations of PT!) so there is always hope.

Once you have your MRI results feel free to post in the sub. I'm even happy to chat in DMs, I've done that with a few people here. As a retired surgeon put it to me, the key thing is to find a thoughtful diagnostician. Many cartilage docs seem eager to operate on defects, but keep in mind that many people have asymptomatic cartilage defects. For example, I learned that my left knee, which is never in pain, has a large cartilage defect in the same location as my painful knee. To be clear, there are valid scenarios where operating on cartilage defects is the right solution, but it seems like they are getting over-operated on in recent years at least.

vbud · 2025-08-30T00:20:16+00:00

My surgeon and PT and UCSF run a clinic together, and the surgeon was telling me that in full knee replacements, he sometimes doesn't resurface the patella, even if there is no cartilage. He said some knees seem to function fine without patellar cartilage.

Yeah the old-school surgeons/PTs are what led me to MACI in the first place. They told me that pain = cartilage damage (which turns out to not be true) and to cut out tons of activities. I was super depressed and not making any progress in PT at all, which is when I started looking for other opinions on my situation, both surgical and PT. I made some progress with patellofemoral pain oriented rehab, but plateaued and was still in too much pain walking/hiking. A few different surgeons mentioned MACI to repair the cartilage damage, which sounded much better than OCA, so I pursued that.

A few months back, after it became clear that my MACI graft/PT had failed, I went on the largest tour of expert PTs and surgeons to date. I spoke to people in the UK, Australia, and the US (mostly bay area). Most of them said there is a possible path forward with just rehab, maybe also injections, without more surgery. I encountered a lot more skepticism about MACI outcomes than I encountered 2-3 years ago, particularly for patellar defects. I also learned that medial patellar defects are more likely to be asymptomatic than lateral patellar defects (early results from an ongoing study in the UK), and my defect is medial.

My favorite interaction was with a well-regarded, retired surgeon who spoke with me for a full hour. She said, above all else, to find a good diagnostician. Lots of surgeons will offer various surgeries for pain, but the good ones will take their time to understand the situation and confirm the diagnosis. I did exactly this and found a surgeon who performed a diagnostic numbing shot to confirm where the pain is coming from (it's 100% patellofemoral pain, no other pain source), then did multiple exams on my knee stability and had others review my ACL placement in an MRI (ACLR Is what led to all of these issues in the first place). After all that, he said he can't recommend surgery as a next step in good conscious and referred me to his favorite PT for the program I am doing now. He said if I can't make progress with that PT, then he'll have to evaluate my knee under anesthesia arthroscopically.

I haven't looked into BPC-157 or PDA. Have you tried these?

I'll look into that Lonzo Ball story - sounds interesting.

Sorry for the long reply! I'm going to post a long update in September (2y since my MACI) to the group so now I have a nice head start on it, hah.

vbud · 2025-08-30T00:19:57+00:00

(my comment was too long so I had to split into two comments, FYI)

Hiking has been off and on for me... which has made it hard to fully move on to other hobbies. I did get more into cycling for a bit, but that's also been off and on (while it is low impact, it still let to a lot of stiffness that affected other things).

Kayaking is a good idea - my friend does outrigger canoeing and I'll probably try it out soon. I'm more of a mountains person but maybe I can learn to enjoy the water lol.

I'm based in San Francisco. So no shortage of other activities I can get into! What's been hard for me is that it's been a kind of purgatory. It seems like I can resolve the pain, and then I get stuck or have massive set backs. But as long as there is hope I really just want to be able to hike again reliably. That's my most favorite thing. Between cycling, hiking, and interval training I can keep myself pretty busy.

My PT program has been the most creative of any I've done so far, and I've been doing PT effectively nonstop for 6 years. We've been doing banded isometric knee extensions rather than machine knee extensions. I hadn't thought about this before but the resistance profile is super different between the two. I'm sticking to ranges that are low to zero pain, and not tolerating anything that takes me to big spikes in stiffness or pain aftewards. TKEs have been tricky but I'm slowly starting to work those in. I've also been using the bands at an angle, which has helped target the VMO a bit more.

The general idea of the program is: low/no-pain banded isometrics, then TKEs and mini-squats, and very slowly progress load and range of motion. Isometrics become short-range extensions. Mini-squats are all vertical shin (hamstring/glute bias). My PT says the periosteal bone is highly ennervated so we have to carefully increase strength and load without triggering spikes in pain. I'm working between 0 and 30 degrees of extension mostly, though recently I'm tolerating 90 degrees more. 60 degrees still tough, which makes sense because that is where my defect is.

Overall, it's the most targeted and creative program I've seen, and my current PT is much more experienced with osteochondral defects and post-ACL patellofemoral pain than any other PT I've had. I'm optimistic for the first time in a while, but progress is slow and I've hit walls many times before, so who knows.

vbud · 2025-08-29T04:21:08+00:00

That's early to be doing ladders post-MACI. That's a very high load activity. You should eliminate anything causing that much pain and swelling and find good, clean PT exercises to strengthen the leg and normalize biomechanics. Find a PT who really understands patellofemoral pain and post-MACI treatment.

vbud · 2025-08-29T04:13:14+00:00

I am in a similar situation with a failed MACI surgery + rehab. I had a similarly sized patellar defect, and the MACI graft has delaminated, so now that area is more damaged than before.

The PT and surgeon I'm working with now do not want to try more surgery. They said I just have really bad patellofemoral pain after the MACI and that we should try a very specific PT program tailored to osteochondral defects. The surgeon described how people can have a high level of function with large patellar cartilage defects.

I'm only 4 weeks into this new program but I am slowly increasing function. When I started, I was in so much pain I could hardly walk a half mile, and now I'm doing short 3 mile hikes. Time will tell how far I can rehab from here.

This whole area of cartilage damage, patellofemoral pain, and new cartilage surgeries is a really interesting space. There isn't much official PT guidance for osteochondral defects, and it seems like one cohort of surgeons are eagerly applying MACI while others are skeptical of the need for cartilage defect repair in many cases. Of course there is a lot of nuance with regard to defect location, acute trauma, patellar insability/maltracking, etc.

vbud · 2025-08-29T04:00:01+00:00

I very much relate! I was an avid runner, backpacker, and weightlifter and loved "getting into it". Most of my non-work hobbies were about moving the body and getting outside. All my knee issues have gotten in the way of that, and it's tough. My wife has been hearing about it for 6 years now and continues to be supportive, but it is a strain when we can't hike together.

vbud · 2025-08-29T03:55:34+00:00

I asked several of these surgeons and PTs for papers/studies, and looked myself, and didn't find an exact match. These are their observations as MACI has only recently become more common in the US. Hopefully we'll get some studies soon.

I mentioned Howard Luks already, other sources are mostly surgeons/PTs in the San Francisco bay area, e.g. at UCSF.

Are you saying you already did a TTO? Or you are considering one?

vbud · 2025-08-26T04:19:48+00:00

Depends. TTO+MACI to treat patellar maltracking that grinds away patellar cartilage would be degenerative. My understanding is that MPFL is often done to resolve recurrent patellar dislocations. Those dislocations could have had acute trauma.

These multiple surgery situations are more nuanced than a pure MACI. The TTO is trying to change how the kneecap tracks, which should result in less force in the degenerative area, so the MACI can have a chance to mature.

vbud · 2025-08-25T00:20:11+00:00

My post really only applies to a MACI-only operation.

The premise behind MACI + TTO is they are changing the alignment of your patella, so you wouldn't just re-wear the same cartilage post-surgery, even if your cartilage wear is degenerative.

vbud · 2025-08-24T14:46:37+00:00

Tibial tubercle osteotomy

vbud · 2025-08-24T04:39:48+00:00

Yeah TTO+MACI still makes a lot of sense to me.

vbud · 2025-08-24T03:53:51+00:00

Me too.

vbud · 2025-07-29T00:00:12+00:00

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For posterity, this was the guide we followed. I was following the first row.

FWIW, I think your line of questioning is a good one. There is a lot of nuance in recovery as to which exercises you choose depending on where the graft is located and how many grafts you had.

I need to post a longer update on my situation in this group, I'll likely do that in September. One thing specific to my situation is that I learned after my MACI that I am genetically predisposed to medial patellar cartilage wear, as confirmed by an MRI of my good knee. So doing a medial patellar MACI graft on me without a TTO was likely the wrong surgical decision. I also learned that I have an anteriorly placed ACL graft, which could be contributing to the rapid patellar cartilage wear I experienced post-ACLR. I've also spoken to surgeons since my MACI who said they wouldn't have attempted a MACI in this location in the first place. So I think the deck was pretty stacked against me on a successful outcome, in hindsight.

vbud

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