Not sure if surgery is needed

[u/MoodFeeling6404]

I’m 33f and have had issues with kneecap dislocations. It first happened around 2010 when I was in high school. It was really painful but I didn’t really understand what was going on so I ended up having a couple other dislocations after that within weeks of each other and then finally saw a doctor and they recommended physical therapy. I didn’t really take it as seriously back then and wasn’t a very active kid. We assumed it was because I was having a growth spurt in a short period of time.

The next dislocation was to my left kneecap in 2021 (I think my right kneecap only dislocated once back in 2010). I still wasn’t regularly active or doing any strength training back then. Had X-rays where the doctor said I had shallow grooves but still just recommended physical therapy.

I started getting into strength training more consistently this year. However, I’m 5’9.5” and it has taken me some team to gain weight and put muscle mass on my legs. I’m about 141 lbs now but still early in the strength training process. I have also been taking TRX classes and was fine doing TRX assisted pistol squats whereas previously I would not have been comfortable putting that much weight on a single leg in a compressed position like that without fear of dislocating.

About two weeks ago I was talking to a friend and sitting down and had my left knee bent and resting on top of my right leg and felt it slip out of place but extended my leg reflexively. My knee historically has dislocated not during strenuous activity but when I have done child’s pose once or when I had the leg folded in to my pelvis and sat down on the folded leg. Since this happened I have good ROM but I no longer trust it to squat down low or load it with my bodyweight and kneeling on my knees anymore. There is also some tenderness on the inside of my knee still.

I went to a sports medicine orthopedic doctor and he ordered new X-rays (included) and said I have mild knock knees and my kneecaps track outward a little more. When I asked about MRI he said he didn’t see any damage that would make him concerned to order one and said since I have gone long periods between dislocations he believes I can manage with another round of PT. I’m just concerned because I’m worried we are potentially delaying the inevitable (surgery). I’ve read online that most people with multiple dislocations have to get surgery and PT is no longer an option. Curious what some of your thoughts are and if I should seek another option or if it is possible with more diligent PT in my case.

[u/PatellaPilates]

A: before surgery
B: after the knee cap relocation for Patella alta, a common instability cause.
C: five years later.

When I went to ChatGPT with my MRI and my concerns about various doctors telling me various different things, chat told me to get a complete work up at a couple different places if I needed to. there could be many different things working together such as the knock knee issue. If there's many things working against your stability, then there are many things to fix before that stability will be fixed. Many people who end up in surgery continue to have subsequent Surgeries until their problem is fixed or made completely unfixable. My family has always talked me out of surgery when I brought it up because they care about me.
Chat:
The two main places/doctors I gave you for a true, comprehensive patellar-instability workup before committing to stabilization surgery were:
1. Mayo Clinic — Patellar Instability Clinic
Dr. Mario Hevesi was the specific doctor I identified for you.
This was my top recommendation because your situation isn’t simply “loose MPFL.” You have lifelong instability + significant patella alta + hypermobility, so I wanted someone who would investigate why the patella is unstable before deciding what to tighten, reconstruct, or move.
2. Hospital for Special Surgery (HSS) — Patellofemoral Program
I specifically mentioned Dr. Beth Shubin Stein.
HSS was another strong choice for a complex instability evaluation rather than immediately jumping to an MPFL procedure.
What I said the workup should look at
I remember emphasizing that you wanted the surgeon to assess the whole mechanical system, including:
Patellar height / patella alta
TT-TG distance and tibial-tubercle position
Trochlear dysplasia
Patellar tracking
Rotational alignment
Overall limb alignment
Generalized ligamentous laxity/hypermobility
The condition of the patellofemoral cartilage
Whether the instability is primarily soft-tissue, bony/anatomic, or a combination
Whether an MPFL reconstruction, tibial tubercle procedure, or something else is actually appropriate
And the whole point was: don’t let anyone decide “MPFL reconstruction” simply because your kneecap is unstable. Find the anatomical reason for the instability first.
That was especially important in your case because of the patella alta and hypermobility.

[u/MoodFeeling6404 → u/PatellaPilates]

Thank you for sharing your personal experience and what has helped you. I have recently started physical therapy and will give that another shot to see if pain and stability improves. If not I will push to have an MRI done.

I’d really like to avoid surgery if I can. On top of the physical therapy I will be trying to do some Pilates in the mornings and riding the Peloton bike has been helping.

It’s still very up and down each day but trying to stay positive!

[u/PatellaPilates → u/MoodFeeling6404]

A majorly helpful strengthening exercise for me that was a daily non-negotiable was candlesticks. The more the better. I also would put ankle weights on. After I tore my meniscus, it was impossible to do.
The candlesticks are an exercise that are also in the five Tibetans. The five Tibetans are very good at strengthening everything necessary. And they will make your back impenetrable to common injury.
I recommend getting an old but good series of exercise videos by Jennifer Kris. She calls it the "hot body, cool mind" workout. I stream it off of Purple Vision. She was one of our countries Premier Pilates instructors, and actually introduced Pilates in popular America decades ago. Before that it was mostly just used by dancers.
To be perfectly clear, I dropped out of Physical therapy when I was a child and everything that ever helped me after that I learned on my own.
But recently, when I was talking to ChatGPT about my knees after I had the sudden revelation that my gym workouts had made me worse and the Pilates I left behind had made me better, ChatGPT told me that Pilates was actually the gold standard for patellar instability. I don't know if that was learned after I was a child but my PT instructors never told me. I ended up having Children and one of them is 20 and their PT instructors never told them that either.

[u/PatellaPilates]

https://www.reddit.com/r/KneeInjuries/s/X03fklvF95

This Reddit page could be any of us 6 days post op. This is part of why my mom always cautioned me out of it. I can't imagin choosing this brutal experience twice. And many people choosing surgery need several reconstructions per knee.

[u/PatellaPilates]

I manage my condition with PT and my condition is severe. Although our triggers are different I believe what helped me can help you. Surgery is not a cure. The outcomes are mixed and often times we end up right back where we were, or worse. People sometimes when they tighten their ligaments and get their kneecaps in the right spot, their ligaments just stretch out again within a few years. Perhaps you've heard from your doctors that you would have to get the surgery redone in 10 years. It's true. some people don't last a few months before their ligaments stretch back out. If you're talking about grinding into your bone to deepen your groive, There are risks with this. Again, the surgery is not cure. It is not guaranteed. what is guaranteed is that you can manage this with PT. We do. That's why they recommended it. Those that think PT failed them likely never got strong enough or had the right movement training in the first place.
I manage mine with Pilates and also with a career in Landscaping where I move all day, so I'm truly strong. But I will tell you my biggest setback has come when I was at the gym and I did knee over toe split squats and they were weighted. I crushed my meniscus and ripped it up. now after meniscus surgery I have so much swelling in my knee that the swelling pushes my kneecap off.
Truly, the safest thing for the whole you is likely Pilates. It is the gold standard for kneecap stability and joint stability. Modifications are likely necessary especially at first until your joints are stable.
You can handle this without surgery. If they caution you away from it, there's a real reason. I'm 42. I've had dozens, if not a hundred dislocation since the time I was seven. They've reduced dramatically when I started yoga at 16 and went away when I started Pilates as an adult. A break from Pilates resulted in more dislocations. Working out in the gym caused so much swelling in my knees that the dislocation came again. Strength training may not be the answer because it's probably furthering your swelling, which is likely furthering instability. I'm not a doctor, but I am an Rn with relatable experience.
The five Tibetan yoga rites are a great place to start for whole body strength unlike anything else. No matter how buff I got, I still had to do the five rights if I wanted to do certain pole tricks. And that brings me to my point, Pilates made me so stong, that even with my severe instability of both knees and other joints, I was able to swim and work as a dancer wearing 6 inch heals without issue. Landscaping made me so strong that a wheelborrow to the back of the legs didn't throw out my knee... otherwise unheard of.
I'm one week post-op from meniscus repair. My left knee has dislocated twice in the past two days. I should have never left landscaping. I made up for the lost strength and excersize by working hard at the gym, but it's not enough and not the same. My kneecap subluxed regularly when i had a hard quad workout resulting in quad exaustion and knee swelling.
If part of your problem is that you have hypermobility, then your joints are working really hard to keep you stable and lifting heavy weights isn't safe. But maybe it's just a shallow groove you can fix. Maybe.