#miserable malalignment syndrome

[wheelie-sick]

Thanks for making that post on rotational differences! I assumed my knee pain, my knees feeling like they’re about to dislocate, my knees facing inwards when I stand and facing out when I place my feet out, etc. was just due to hypermobility. But now I’m not so sure. Is MMS something you can self-diagnose? I might want to bring this up with my doctor but I can’t be sure he knows what rotational differences are. I have a general hypermobile spectrum disorder diagnosis at the present.

yeah that's not hypermobility at the very least. hypermobility does not affect the way your kneecaps face (unless they are actively dislocated but that's a different situation)

I'm personally of the opinion that self diagnosing a rotational difference is fine with research. there are several lower limb rotational differences that can all look rather similar at a glance so it's important to familiarize yourself with all of them and their presentations first. from my understanding, MMS is the rarest lower limb rotational difference. in my opinion it's also the hardest to self diagnose because it's two rotational differences combined.

[mariekavanagh]

One of my knees tried to dislocate this morning, two years to the day since my last major flare-up, on the same knee.

Spooky.

[ravynkage]

I’m booked for my Knee Op.

Holy Stars and all the Shiny things in the world. Just had a phone call from Carlise about my Knee op, i’m heading there this Wednesday (21st) for my second pre-op (heading out at around 5am so with any look the roads won’t be as bad as they were last time, and then on the 30th it’ll be my op. My heart is going a mile a minute, and i’m as shaky as fuck, i mean i was expecting it to be sometime in January, now now, i’m not complainig, i’m just shocked, very shocked.

What a fucking christmas present. seriously, i havn’t touched alchol in at least 10years now i could really do with a drink or six. My anxiety is gonna go through the roof. i think it’s already starting to go up. I need chocolate. lots of chocolate and a cuppa.

[wheelie-sick]

in regards to my legs I always have the urge to say "I want to go back to before this" but I was born like this there is no before this I have had a limb difference since day 1 this was all an inevitability. of course my cartilage is wearing out in my early 20s, my bones are opposite directions, grinding against each other in ways bones weren't designed to. of course my kneecap dislocates my knees weren't set up to keep it in place. I have always had this pain I have always had these problems. they have gotten worse as my cartilage has worn down and my connective tissue has worn out but there is no before. there was never a good answer with my legs it's all either surgery or suffering and in most cases both.

[wheelie-sick]

I got approved by gait analysis to do my patellar stabilizing surgery without the derotational osteotomies!!!! 🎉 gait analysis thinks it's mild enough that the surgery will work without the derotational osteotomies!!!! 🎉🎉 this wasn't all for nothing!!!! 🎉🎉

[wheelie-sick]

one day someone is gonna get diagnosed with miserable malalignment, wonder if anyone else on Tumblr has it, look it up, and discover Just Me. 10,000 posts and they're All Me

[wheelie-sick]

My Gait Lab/Gait Evaluation Experience 🚶

I couldn't find anyone else documenting their gait lab experience so I wanted to share mine

under a cut cause this is long 😭 I like giving detailed explanations because I appreciate them so I included all the details

my gait eval was done for a potential future surgery to gather information on my limb difference (miserable malalignment syndrome), if you're having your gait eval is happening for another reason it might look different. I had my gait evaluation done at the gait lab at the Children's Hospital of Colorado, different gait labs might do this differently

before my gait eval I answered a questionnaire asking questions about my reason for getting a gait eval, my concerns with my gait, and my pain levels. I also had to sign a consent form to be recorded.

at my eval I had to wear shorts, the shorter the better. I came into the appointment with shorts, if you did not I imagine they would have you change into their shorts. I wear a sleeve on my leg to cover scars, I was allowed to keep this on for the first 2 parts but not the third. my top did not matter. I had to take off my shoes and socks.

the first part of my evaluation was spent taking measurements and evaluating my strength. most of the measurements were taken of angles of my legs, ankles, and hips. I had to lay on my back and stomach. the PT was very accommodating of me during the part where I had to lay on my stomach-- this can push my patellas out of place and is very painful because of this so I had trouble doing some of the movements for the measurements and had to take breaks. I also had the rotation of my legs measured again, this might not be measured if you don't have a rotational difference. during this step they used marker at several points to mark things for measurements and the cameras.

during the strength evaluation I was expected to give resistance to the PT trying to pull on my leg and foot. I was also asked to do some basic movements with my legs. if you've ever had a strength evaluation in physical therapy this is the exact same thing.

from there we moved on to the first part of the gait evaluation. in a different room with a large, high contrast pad and many cameras I was asked to walk in different ways while I was recorded. from memory I walked back and forth several times and walked backwards. I was allowed to keep my leg sleeve on for this.

after this part was done I had many sensors placed on my legs. several sensors measured my muscle impulses to make sure my muscles are moving at the correct times. to attach these sensors they cleaned my skin with an alcohol wipe and lightly sanded my skin. the sensors were stuck on with adhesive but were wrapped in vet wrap for extra security. small orbs were used for the cameras to pick up and have a point to connect the "dots" on the modeling software. these were stuck on using adhesive but most were on top of the vet wrap. I had to take my leg sleeve off for this.

me in all my sensor glory:

[ID: a person standing with vet wrap around their legs in multiple spots and several round stickers. he is smiling with his hands at his side. a black box covers his feet saying "devotees leave me alone" he is standing on purple tiles in a brightly lit room with a rudimentary computer model of his legs in the background]

after all the sensors were attached I had to do several simple exercises to make sure they were working. I was also asked to walk in front of the cameras once. I then had the chance to rest for a minute while the sensors were connected on a modeling program.

once the sensors were connected in the program I walked back and forth many, many times on an area with purple "hopscotch" tiles and a large black tile. the purple hopscotch tiles measure the force on each leg with each step while the black tile measures the pressure across your feet.

I had all the sensors taken off once I was done with the walking. they did not hurt to remove, even with leg hair!

the results will take 4-6 weeks to receive. I will have a follow up appointment to discuss them and the options for surgery. I'll probably update this post with what the follow up appointment looks like

[wheelie-sick]

gait lab done!!!

[ID: a person standing with vet wrap around their legs in multiple spots and several round stickers. he is wearing a black crop top saying "dead inside" and short black shorts. he has shoulder length brown hair and is smiling with his hands at his side. a black box covers his feet saying "devotees leave me alone" he is standing on purple tiles in a brightly lit room with a rudimentary computer model of his legs in the background]

[wheelie-sick]

about to be one step closer to surgery (doing my gait analysis to get a better idea of how my legs are rotated)

had a nightmare last night about surgery, I want to do it but I'm so scared of it. it's a major surgery and I'm likely getting metal in my knees and that's just terrifying but it needs to happen because I'm losing cartilage so 🥲

it'll be my first major surgery, I've had minor ones before but never anything like this. I legitimately have 7 things wrong with my knees that all need treatment. it's frustrating, I don't know what to do and I can't tell if I'm making the right decision. I'll be the first person recorded getting this particular surgery for miserable malalignment syndrome instead of just doing a derotational osteotomy. I'm honestly very scared that I'll get surgery, it won't work, and then I'll be in the same or worse boat and need to get a derotational osteotomy to preserve my cartilage. I don't know what to do and I just want to cry about the whole situation.

[wheelie-sick]

lately I've been having to wear a brace on one of my knees full time because I can't kneel without my kneecap wanting to pop out of place and I'm so fucking excited about my surgery

I am never!!! going!!! to have!! to deal!! with this!!! again!!!

like that makes me want to tear up honestly my patellar instability has been the most miserable part of my hEDS and miserable malalignment and I'm just going?? to be done with it??? forever???? never dislocate my patella again??

it's so relieving to know I'll be able to put this knee brace in the closet for an indefinite amount of time soon. that I won't need it.

I've spent so long being unable to put weight on my knees because of the damage to the tissue from all of my dislocations. every month or so I have major dislocation and I just can't keep up!!! but I'm going to be done soon!!! I can see the light at the end of the tunnel

[wheelie-sick]

Miserable Malalignment Syndrome

---- the disease with objectively the coolest name

I wanted to share some awareness about my limb difference, miserable malalignment syndrome (MMS) so I decided to create a post talking about it!

MMS is a rare rotational deformity affecting the legs. rotational deformities are a category of deformity in which a bone, or multiple bones, are inappropriately rotated. MMS is a condition where both the femur and tibia are rotated in opposite directions, and more specifically, where the femur rotates inwards (femoral anteversion) and the tibia rotates outwards (external tibial torsion) MMS most frequently affects a single leg but can be bilateral.

people with MMS typically appear knock kneed, bow legged, and duck footed with a squinting patella.

MMS typically causes severe pain in the hips, knees, lower back, and in the ankles. MMS is also associated with patellar instability, scoliosis, and early onset osteoarthritis. pain from miserable malalignment is often described as being similar to having knives in your knees.

MMS is most common in children as this condition sometimes naturally corrects itself. other times, MMS can be changed with a surgery called a derotational osteotomy. while many people with MMS choose to undergo this surgery many people also opt out of it.

[wheelie-sick]

sitting anyway that moves "against" my rotational deformity hurts so fucking badly!!!! and the past few days it has been truly awful!! I can't even sit with my legs folded for more than a few moments. I can only sit with my legs straight or w sitting, nothing else

[wheelie-sick]

I've been making a medical info binder and in the process I've been rereading a lot of appointment notes and I think it's so funny because I have Schrodinger's gait disturbance. 50% of my notes mentioning gait say I have no gait disturbance 50% of my notes mentioning gait say I have a significant gait disturbance so like which is it?

[wheelie-sick]

so for the first time in my memorable life I don't have knee pain and what I did not realize is that my knee pain was hiding the feeling of bones. I can now feel my bones, not just can I feel them, I can feel that they are misaligned and rotated. I can feel how they are misaligned and rotated. it doesn't hurt but it feels so weird and has made me gag twice

I also have the balance of a baby giraffe because apparently my brain was using pain as a tool for proprioception and now that my knees don't hurt it has forgotten where my knees are entirely

[wheelie-sick]

I think it would be funny to let an ablebodied person try to walk in my legs because the bones are all fucked up

I've had these bones for my entire life and I struggle to walk in them sometimes so I bet it would be funny to see an ablebodied person try to walk with them

[ravynkage]

So i’ve just returned from York, and the hospital, And Holy HELL. Mum and I were expecting the usual, theres is absolutely nothing we can do for you, that we’ve been hearing for years. Not today. The Doctor i saw, is the first one to have look at the problem i have and then looked deeper and further. Apparently what i have is something called Miserable Malalignment Syndrome. He said it was possible for an operation, but he was going to talk to others to see if there isn’t anything alse they can do, to help me without pulling out the surgery gloves.

So in a few weeks i’ll be getting a appointment for a long line leg xray and on the 23rd i’ll be back to see what they can do.

So now i’m on a research binge.

On the otherside of the day, as a reward for not fainting in the hospital and to help get over the shock, Mother took me to Smyths. I walked away with a 17″ Draculaura. And i’ve ordered myself 17″ Elissabat from Toottoys.