Q: How did you get diagnosed with Miserable Malalignment? Was it present in childhood?

Q: Was it present/obvious in childhood?

A: Looking back, you can see how odd the positioning of my knees was as far back as baby pictures. It’s clearly congenital. I always had trouble with my ankles, but I was an active kid and we assumed it was damage from figure skating or karate or whichever other high impact activity I was involved in at the time. I began to physically struggle more obviously in high school, but was dismissed by several non-specialist doctors. The degradation sped up and culminated in needing a cane by age 24.

Pictured below: 1992 vs. 2009ish.

Q: How did you get diagnosed/who did you see first?

A: When it became clear I was consistently losing mobility and it wasn’t a temporary problem, I went to my primary care physician who said verbatim, “I have literally never seen something like this before.” She sent me to a sports-centric orthopedic surgeon, who brought a handful of physicians into the room to gawk at me before referring me yet again to a specialist at Boston Children’s Hospital. I was just barely under the age 25 cutoff to be seen there and Dr. Snyder gave me a confident diagnosis during our first appointment.

What I Wish I Had Known: Typically, MMS is diagnosed in children and it’s much less commonly addressed in adults. Hopefully that’s changed a bit since I was searching for a physician. It was very difficult to find a specialist who was both knowledgeable about MMS and was also willing to see me due to age. Most of the providers I found were pediatric and wouldn’t take me as a patient, but their offices were a good avenue to source word-of-mouth recommendations to appropriate surgeons. Regardless of where you start your diagnostic journey, you’ll ultimately need to see an orthopedic surgeon and the more specialized, the less time you’ll spend feeling frustrated, ignored, and gaslit.

Q: What surgery did you have? Why did you need it? Isn’t there a less invasive way to manage MMS?

A: I had bilateral tibial and femoral rotational osteotomies.

In less jargon-y terms, this means that they broke both tibia/fibulas and both femurs so they could rotate the middle knee section and realign it, reattaching everything using metal rods and screws. I had all four of these procedures done at the same time because I knew if I did it one leg at a time, it would prolong my recovery (and I feared I wouldn’t be able to make myself go through it a second time). It seems like my concurrent quad-osteotomy situation is not the typical way that this is done, but no one said I shouldn’t do it that way.

They typically don’t perform this highly invasive surgery unless 1) your bone rotation is over 20º and 2) you’ve exhausted all other options like physical therapy, orthotics, and bracing. My rotation was over 30º in all bones and it was clear that I was far beyond those intervention methods both in severity and age. The intention of the surgery was to halt my loss of mobility, with a vague hope of perhaps returning some of my previously lost ability.

Q: Was the surgery painful? What was the hospital experience like? Did you have to wear casts?

Q: Was the surgery painful?

A: I could sugar coat this so as not to scare you, but in the interest of honest reporting, I’ll admit that the experience was extreme. I had about 6 months to wrap up my life between scheduling the surgery and the actual procedure and in that time, the unknown of it all was so damaging to my psyche. The anxiety was intense and, as a person who mentally runs every possible outcome for all situations, I tried to prepare myself for all the worst case scenarios. I hoped it couldn’t possibly be as bad as I was building up in my mind but truly, it was worse than I ever could have imagined.

Several weeks post-op, still extremely swollen with a cumulative total of 20~ deep incisions.

I want to stress up front that my hospital experience was unusually traumatic for the pre-pandemic era and the experience caused me to develop PTSD that I am still working through to this day. I’m going to skip over the more traumatizing parts that were (hopefully) specific to that hospital* and instead focus on more general things you may expect when getting a rotational osteotomy.

* None of it was my specific surgeon’s fault but a word of warning to the Californians out there, please get a second opinion elsewhere before agreeing to get a procedure like this at Loma Linda. I regret it to this day.

Short answer is yes, of course the surgery is painful—especially since I did all four segments at once. It wasn’t just the expected pain of six simultaneous broken bones, but the tissue trauma that comes with repositioning everything inside your legs. All of the muscles and tendons shift position when they rotate the bones so everything was very, very swollen for a couple of months. I found the relentless swelling to be the most painful part. I also did not expect the eerie and indescribable feeling of my brain not being able to find my legs. It took probably two weeks with intensive, thrice-weekly physical therapy plus my family doing constant exercises with me at home before my brain was able to remap where the muscles and tendons had disappeared to and be able to even wiggle my toes (think that scene in Kill Bill v.1).

Q: What was the hospital experience like?

A: I was in the hospital for six days with a heavy cocktail of painkillers in both pill and IV form, as well as a misplaced epidural. No one warned me ahead of time that the hospital’s physical therapist would make me walk on my six broken bones the day after surgery. They were technically weight bearing thanks to the metal rods through the center of the bones, but the pain was blinding. I blacked out the first time they made me stand. (Note: My surgeon was horrified when he learned at the post-op that they had done this, so that leads me to believe it’s not a standard part of aftercare. I’m including it just in case that’s something you need to be prepared for.)

Q: Did you have to wear casts? What was aftercare like?

I did not have casts, just tightly wrapped ace bandages from toe to hip. I know some people require external metal cages called fixators, but I did not and I’m not sure what necessitates those.

This photo is from a follow-up surgery in 2017, but the left leg ace bandage situation is the same.

Q: How disruptive is the surgery? Would I be able to live on my own and care for myself?

A: Short answer, no, I really don’t think so.

* Requisite asterisk of having all the procedures at once, but I had to move back home for this.

I was living on the east coast when I obtained my diagnosis and began researching the surgery. It became quickly apparent that I was not going to be able to remain in my two story apartment in a physically demanding city while going through this, so my now-husband and I moved across the country and back into my parents’ house. We lived there for just under a year while I recovered. I am very lucky to have a supportive and resourceful family who sacrificed a lot to be my full-time caretakers for a while.

I had no concept of what activities a surgery like this disrupts so I’m just going to make a list:

• Even simply bringing me home from the hospital was a multi-person ordeal. Dad—who was thankfully retired and home a lot—had to creatively alter the seats in the van since my knees couldn’t bend. He, my partner, and my brother had to work together to lift me in and out of the car through the trunk every time we had to go to an appointment (and I had to go to physical therapy three times a week for a long time).

• I had to live in my parents’ room for the first 6+ months because it was the only room with doors wide enough to fit my wheelchair. The only other place I could be was the armchair in the front room. Dad used PVC pipe and other scraps to build a sort of cage, which we called my battlestation, that fit over my legs and the chair. I used that as a desk and it kept our dogs away from my legs.

• I couldn’t lay or sleep comfortably so we had to figure out how to best prop me up and a mountain of pillows was the answer. We got a wedge pillow to help take some of the pressure off my low back and tailbone. I had to keep my legs elevated a lot of the time to encourage blood flow, so that was more pillows. We had another small microbead one that helped redistribute the weight off my heels, where I was developing very painful pressure sores. I crammed several more pillows on either side to really pin me into place while sleeping, otherwise my unconscious body kept trying to turn onto my side (and my conscious body really didn’t appreciate the pain that caused). 

• I had to use a free-standing bedside toilet for the first month because I was 100% bedridden. My mother is a saint for managing that and I am still deeply embarrassed. I also couldn’t shower while bedridden, so I relied on body wipes (which still doesn’t make you feel any cleaner). Mom and my grandma had to help wash my hair, which was a logistical challenge in its own right.

• Once I could be moved more, we had to take the doors off the shower so we could (mostly) fit a shower chair in it. Dad used scrap vinyl flooring to make a track over the carpet so I could be rolled from the bed to the bathroom using the seat part of a desk chair while someone else held my legs up to prevent them from bending. My partner and I figured out how to gracelessly transfer me from the desk chair to the shower chair and out again. It was very much a two person job.

• Dad had to lift me out of bed and into the wheelchair or out to the armchair every time. He had to be the one to get me and the wheelchair over the awkwardly heighted lip of the front door frame, then down the entry step without me tumbling out. He also ended up being the one to fight with the wheelchair supply company for months on end when they inexplicably assigned me a child’s wheelchair I couldn’t fit into. My best friend is the one who found an appropriately sized wheelchair I could use (thanks Annette y su familia). Check your wheelchair before leaving the hospital, folks!

• The less physical stuff was a challenge too. I left the hospital with opiates to be taken every two hours and muscle relaxants to be taken less frequently (which I couldn’t keep track of due to, y’know, the opiates) and blood thinners that had to be injected into the skin of my abdomen daily. I couldn’t do the shots myself and my mom couldn’t bring herself to do it, so my partner became my injection administrator. (Thanks, Alex)

All of that is to say, no, I could not have taken care of myself throughout my recovery. I can’t imagine trying to go through it without a strong support system and at least one person living with you.

Q: How long until you were walking on your own again? Was it hard to relearn to walk?

A: That’s a multi-faceted question. I was 100% bedridden for a full month and then exclusively in a wheelchair for a few months. I attended physical therapy three times a week starting two weeks after the procedure and consistently did my exercises at home with help from my partner. Simply getting from sitting to standing felt like an insurmountable obstacle while the bone breaks were healing, which spanned (approximately) the first eight weeks. PT during that time was largely focused on reteaching my brain to control my legs and breaking down the huge knots of scar tissue, which was one of the surprising worst parts of the procedure.

We slowly introduced strength building exercises, then movement. It was excruciating work and would certainly take longer without rigid dedication to home practice. Prior to surgery, I was an active rock climber—which is an undeniably painful sport—and my PT felt that was why I was able to mentally make it through so much rigorous physical therapy early on.

If you’re asking how long before I could painfully bear weight and take wobbly, toddler-like steps with a walker, I think that began between three and four months post-op. The real walking practice couldn’t begin until after the bones healed. I had surgery in May of 2016 and could split my time 50/50 between labored walking and the wheelchair by October. I started working again in November, which was partially remote. Driving was still very painful at this point and I wasn’t doing it much. I still needed the wheelchair for longer outings or anything that required a lot of standing in one place, like a concert. It was just under a full year post-op when I finally gave back the wheelchair and moved along with my life.

I’m currently five years out, I still attend physical therapy once a week, and I still walk with a cane, as I will for the rest of my life. I even miss my wheelchair and sometimes have to rent one for high walking activities, like going to an amusement park. I will likely need to own one again in the next 5-10 years*.

* Asterisk here about my connective tissue disorder, your results may vary.

Q: Did you get the hardware removed?

A: I got some of the hardware removed, but not the big pieces. I started out with a cumulative four metal rods and 18 screws. I have had two subsequent surgeries since the osteotomies, in 2017 and 2018 respectively.

The first surgery was to deal with a scar tissue buildup around my left knee. The scar tissue was trapped on one of the screws and I wasn’t able to bend my knee past 45º for a year. They had to do a manipulation to break the scar tissue and they took out a handful of screws. They took out another handful of screws during the second hardware removal procedure. I required more physical therapy and had trouble getting around for a couple weeks after both procedures, even though they were relatively minor. I currently have (I think) 13 screws remaining and will have to get more removed in the near future since they’re bothering me.

I will not be getting the rods removed, though. Removing them would require another invasive surgery with substantial recovery time and my surgeon never intended for them to come out, so I will always be a bit of a cyborg.

Q: Was the surgery worth it? Are your legs better now? Do you still have pain?

A: That’s also a big question with a difficult answer, so this is where we’re going to talk about the connective tissue disorder of it all. The TL;DR of this is please, please, please get evaluated for connective tissue problems before getting a surgery like this. If I had, I would’ve saved myself years of trauma.

I did everything I was supposed to post-op. I kept up with regular physical therapy, I got new prosthetic grade orthotics to support my ankles, I practiced walking without a cane, I trained and did my best to stay active despite continuing to live in daily bone pain. My surgeon kept giving me short term temporary handicapped parking placards because he was sure I’d be walking fine in no time. All of my doctors didn’t understand why I wasn’t having a better outcome. The procedure itself had gone so well and my recovery was faster than anticipated, so why wasn’t I bouncing back? I internalized a lot of guilt about not doing enough or trying harder to recover. I was promised less pain and walking better than I ever had before. But that never happened. 

Instead, I wasn’t developing muscle the way I should, my chronic pain was worsening, and no matter how much physical therapy I attended, I couldn’t move off of my recovery plateau. We knew something was going terribly wrong when my physical therapist noticed that after all of this, my knees were beginning to rotate back inwards. After a lot of research and being tossed around between bewildered doctors, I was ultimately diagnosed with a connective tissue disorder in 2019.

I am still currently in the process of identifying which one due to delays caused by the pandemic. The technical diagnosis I have is Joint Hypermobility Syndrome, which is frequently used (and listed in my paperwork) interchangeably with the hypermobile-type Ehlers Danlos (hEDS). My doctors suspect that this genetic disorder is likely the reason my bones developed the way they did in the first place, resulting in Miserable Malalignment Syndrome.

Bringing it back to MMS and the surgery, I was never going to experience the results expected from the osteotomies. My connective tissue is too lax and even though the bone work was performed properly, they were always going to keep rotating. I wish we had known that five years ago, but alas, no one caught it. It sucks, but I’ve adapted. I am now officially considered permanently disabled, which at least means I get to have handicapped license plates that I no longer have to renew every year.

To reiterate: please get assessed for abnormal hypermobility prior to surgery. (especially if you’re “double jointed” and have fun body tricks you like to show people at parties, or if there are mystery joint issues that run in your family). Not all hypermobility is disordered, but if it is, you want to know about it early so you don’t end up like I did. Continuous physical therapy is key to management.