Wait so what ARE knees supposed to look like?

Until I was fourteen, I never thought much about my knees. They minded their own business, doing all the bending and supporting and whatnot they were supposed to, with the occasional scrape or bruise. All knees are kind of weird looking when you start paying attention, so I assumed mine were pretty normal as far as knees go.

This all changed at a softball practice in the spring of 8th grade, on a damp neighborhood field. During a scrimmage, I hit a double (which would have been a triple, but I was a notoriously slow runner). When my teammate got a hit, I was rounding third when my cleats slipped on the wet base. I heard a terrible pop, and suddenly my knee gave out underneath me and I was on the ground.

Patellofemoral Instability and Pain

My orthopedic specialist explained that I had something called Patellofemoral Pain Syndrome with patellar malalignment. Broadly speaking, patellofemoral pain syndrome means you have pain around your kneecap (the patella). This is usually because your kneecap isn’t moving on the proper track when you bend your knees. This condition looks different depending on whether your kneecap is unstable, or whether it is pinned out of place.

In my case, my kneecaps were firmly pinned on the outside (lateral side) of my knees. There’s a little divot in your knee called the trochlear groove that your kneecap is supposed to rest in and glide up and down in. My kneecaps were sitting to the lateral side of this groove. Every time I bent my knees, I was effectively grinding some of my tissues and creating inflammation. The cause was a combination of genetics, puberty, and muscle imbalance. My meaty softball thighs were too strong relative to the smaller muscles on the inner leg, and the inflammation further weakened the critical VMO.

Under the stress of these conditions, some of the tissues holding my kneecap in place let loose. My kneecap took a very wide curve as I went down, hence the pop and fall. For most cases, physical therapy and bracing is typically the first line of treatment, but given the particulars of my anatomy, surgery was inevitable.¹

Tilted Kneecaps

Once the doctor pointed out that my kneecaps were in the wrong place, I could never unsee it again. When I bent my knees in front of me, my kneecaps were tiled so much that my knee had a little apex at the center where the side of the patella stuck out. I don’t have a copy of my original x-rays, but they looked similar to this example from the Ortho Info article.

The standard surgical treatment at the time was a lateral release, in which the patellar ligament on the outer side of the knee is loosened to allow the kneecap to fit back into the trochlear groove. Since the ligament on the medial side of my knee was also damaged, this was coupled with a medial plication (tightening). A medial plication requires the knee to be kept straight for 3-6 weeks to let the tissue fully heal. This meant I was in a brace from my hip to my ankle for six weeks.

My high school was a hodgepodge of separate buildings erected on a swamp over the span of thirty years, so I needed a wheelchair to get around. This came with certain perks, like getting a key to the school elevator, and making my boyfriend escort me around campus catering to my every whim, a Cleopatra on her palanquin. But in general it was a pretty rough recovery and served as my introduction to the extent the world is not made for the disabled.

I think it took about 8 months for me to fully recover from this first surgery. Below I am pictured immediately post surgery and 3 months after, posing grumpily in front of my team’s 2003 championship plaque.

Knee surgery count as of 2003 = 1

In the neat and tidy narrative structure presented above, I implied that I had surgery shortly after my injury. This was not the case. The inciting incident at softball practice occurred in March or April of 2003, and I didn’t have surgery until November.

Playing through the pain

My parents asked the doctor whether continuing to play softball on the injured knee was an option. The doctor assured them that as long as the pain wasn’t too bad, I was welcome to delay the surgery and play the rest of the season with a brace.

Of course I wanted to keep playing. Softball was about 50% of my personality (the other 50% was being “smart,” ugh). I honestly did not think the pain was that bad. I did not know at the time that I had HSD and a skewed pain scale. So, I played an entire season of softball, still pitching through the summer select season. We won the Houston area championship that year and went on to win 3rd place in the regional tournament (Texas, Louisiana, and Oklahoma).

In November, when I visited my surgeon for my first post-op appointment a few days after surgery, he gleefully showed me the images and video from my surgery. “You had the most extreme patellar tilt I’ve ever seen!” he exclaimed. “How were you even able to walk much less play softball? Your kneecap was under so much strain it looked like it was about to snap off!”

I am still not entirely sure what to make of this to this day because I don’t remember it hurting that badly. My knee would ache, and occasionally I’d get a sharp pain if the kneecap moved out of place, but it always subsided. I wonder whether the issue was that I was used to such a high baseline level of pain without realizing it.

The surgeon told me I would likely need the same procedure on my right knee eventually. I was able to put off that surgery until eight years later by bracing and doing PT when needed. I finally caved and had the surgery in 2011, before I headed off to graduate school. Unfortunately, during the rest of puberty, my hips had further widened, and my left knee needed a second lateral release.

So in the summer of 2011, three weeks apart, I had a lateral release on both knees. Since there was no medial plication, the recovery wasn’t as bad. I was able to walk within days of each surgery. Bending was another matter though, so I couldn’t walk up and down stairs for six months. When the summer was over, my husband (then-fiance) and I moved for me to attend grad school. We didn’t have any friend nearby yet, so he had to move all of our furniture by himself into our new apartment.

Knee surgery count as of 2011 = 3

After two lateral releases on my left knee, with my loosey-goosy connective tissue that I did not yet know about, eventually my kneecap became as wild and free as a bird on the summer wind. Sure, it could track correctly now that it wasn’t pinned to the side of my knee. But would it? Sometimes yes and sometimes no. Like a manic pixie dream girl, it was unpredictable in the most annoying ways. I wasn’t very active during grad school, but just walking up some stairs or sitting down could send it on wild adventures.

There was an old desk in my lab with built-in metal drawers on either side of the narrow center gap. My left knee would often be pressed against the drawers as I went to stand up. Somehow the angle of this contact with my knee was exactly right (or wrong) to send my kneecap in a weird arc, snapping from home base on the lateral side of my knee, over to the medial side, and back. Eventually my labmates got used to me yelling “Fuuuuuuccckkkkk I’m fine I’m fine I’m fine.”

And this is how I lived for the next ten years.

Top of the pain pareto

2018-2022 were busy years for me, personally, professionally, and medically. I had a septoplasty with turbinate ablation, tennis elbow and plica debridement, did a year of physical therapy for my neck and shoulder, was diagnosed with sleep apnea, hEDS and MCAS, started going to therapy and getting meds for anxiety, and on and on and on. It took a while for my knee to climb high enough on the pain pareto to get my attention.

In 2019 I tore my MCL in my left knee, and my knee stability never really recovered. I kept having more and more kneecap dislocations, and more pain. About a year after my elbow surgery, the knee was finally getting my full attention, and I went to see a surgeon. He was excellent, explained things very clearly, and also rocked me to my core. It turns out! Lateral releases don’t work!!² At least not when done alone!!! And I’d had three!!!!!!!!!

Screws in bones

He explained that my trochlear groove is far too shallow, and high up on my knee. No amount of releases or plications was ever going to fix me. The gold standard treatment for a knee like mine is a tibial tubercle osteotomy AND medial plication AND lateral release. As we’ve established, my lateral ligament was thoroughly released. My medial ligament needed tightening again because of the damage from all the dislocations. But what the heck was a tibial tubercle osteotomy? I had never heard of this.

My doctor calmly but hastily explained that they would cut out a piece of my tibia, move it over, and screw it back in, to create a better groove for my patella. My stomach sank. I asked him to explain it again, trying to process. As it sunk in, I realized this was going to be nightmare of a surgery. Screws in bones! Knowing the answer would be upsetting, I asked what the recovery would be like. Eight weeks (two months!) of no weight bearing, leg completely straight for the first few weeks and then gradually allowed to bend.

This news was difficult for me to absorb. I didn’t know how I would mange it. But I also knew it was the only way to have a usable knee again. It made sense– if the problem was my anatomy, the solution ws to change my ataon So with the support of my husband, I scheduled the surgery, accepting it would be terrible but doing everything I could think of to make it less terrible.

I documented my surgery preparation and recovery in detail here and here, so I won’t recount the rest here.

Knee surgery count as of 2023 = 4

Nine months later, I am still recovering. Progress has been slow but continues in an upward direction, which is all I can ask for. When I wonder whether it was worth it, I can just look down at my knees. Both of my knees used to look like my right knee in the photo below. It’s weirdly overwhelming (in a good way) to look at my left knee now. Is that what knees were supposed to look like the whole time? I have a normal knee now? The kneecap is right in the center, and is well-behaved? The terrible surgery worked?

I still have some pain and muscle weakness, but my knee is so stable now. I can rely on it to do what it’s supposed to when I walk and squat and climb and jump. I still have to be careful not to hyper-extend it, but I’ve never experienced this level of stability before. When so many of my joints are complete garbage, I can think of this one with joy and gratitude.

My right kneecap is still firmly pinned on the right side of my knee, which causes occasional pain. But as long as it’s not dislocating, I’m happy to let it be its weird little self. And now I know that if it starts acting up, there actually exists a solution.

Footnotes

1. PT was only mildly helpful for me, and taping didn’t work at all, but here are some resources on both, as well as braces and other support products that did help me.
2. This is an over-generalization. There are some patients for whom a lateral release has ben successful. But it’s no longer the go-to first line of treatment.