i haven’t updated this in a few months in order to let some data (for lack of a better term) build up. i have a lot of information, most of which i think i remember. if the point of these posts was to provide information for other people i might have already fucked up. anyway: things are mostly better! today and yesterday specifically have been horrible because i just got back from a trip that involved A LOT OF WALKING. as a result, my hips exploded.

first, back in april, i had another leg appointment! with the leg doctor guy. the ortho. yeah.

 

swag

 

after he studied my MRI and x-rays, wiggled my leg around, and then murmured “that’s so strange” multiple times under his breath, the doc gave me a very reassuring diagnosis of “i don’t know, pretty weird!”. if i were paying for this visit i think i’d be mad about how often i get the “pretty weird” diagnosis, but i recognize that it’s a polite way of saying “your life is very bad and there’s not anything medically i can do about that”. sometimes, it’s the honest truth. they’re not magicians. they can’t improve the material conditions of my life or whip up a cure/relief if it doesn’t exist.

thankfully (“thankfully”) i am poor enough to enjoy what literally every other nation on earth has access to: free medical care. and he did come up with a temporary solution for the pain. a knee brace! getting it from the doctor meant i didn’t have to do any of the (extremely daunting for someone who pathologically cannot make small decisions) work of trying to sort through a sea of different braces in a CVS aisle. it fits perfectly AND my day to day pain dropped dramatically. it was immediately evident when walking up stairs; the persistent “pulling” pain in the back of my calf was almost entirely absent instead of being razor sharp. it’s not intolerable pain without the brace, just annoying. now its not a bother at all.

a combination of the knee brace on bad days, doing p.t. when i remember to (my body now craves being stretched with the inexpensive resistance bands i purchased), and taking it easy (hehehe sorry! can’t do shit! doctor’s orders!), i’m starting to notice some nice changes to my gait. i used to walk up the stairs on my tip-toes and now my full foot hits the step. the muscles that were once too tight to do so comfortably are starting to unclench. it’s been nice to get some noticeable results. the worst possible outcome would have been everything remaining exactly the same and realizing that i was just kind of experiencing life as it was intended for me. b-bummer! time to raise that wellbutrin dose again!

my biggest complaints about my current below-the-waist situation (before i ground my hips into dust) were that my pelvic floor was/is so tight that it physically hurt and that my erector spinae muscle that covered the most lower part of my back right above the center of my ass began to feel TERRIBLY tight. it felt WEIRD in an unpleasant way. downward dog or downward facing dog (i think these are the ones) yoga poses have been relieving the ass cramp. the cramp in my nether regions is mostly a result of anxiety more than leg problems. however, the p.t. has been helping with the process of untangling the several decades worth of painful cramping i’ve let accumulate over the years.

there’s new, normal “i’m out of shape” pain in my legs now from time to time, but the pain is manageable with an over the counter pain med and goes away in about a day. it’s a specific and different type of pain from the one in my knees and, now, in my hips. i just got back from a disneyworld vacation and epcot is still designed with the idea that every human being is a long distance endurance runner. that place is horrendous to get around. there was a LOT of walking done two days ago and my joints still feel like someone is grinding glass in them. my knee was actually fine (save the one very painful hill in epcot; i see now my knee problem is triggered by going up in any capacity), which is a relief. one less thing to worry about.

however, i think i will go back to the ortho and ask about my hips lol. [wobbles pathetically like a t-rex out of the room]

great (?) news: it’s a bone deformity!

i was going to make a follow up post when i got results from the orthopedist but he’s booked up until mid-april so i’ll post a shorter-update now.

you’re my captive audience so i’m going to complain a little bit (but i’ve bolded the important bits for anyone here for the leg info): this turned out to be the month from hell. at the beginning of the month i was still doing p.t. (which did not do anything to correct my pain but it did DRASTICALLY improve my balance. i’m going to keep up these exercises so i don’t become wobble like aluminum foil when walking on stairs) two times a week. then, just for fun, our heat stopped working. this turned out to be due to a broken valve on our apparently leaking oil tank. because the valve is welded to the tank, it was necessary to purchase an entire new one. then the heat stopped working. after having an emergency plumber come out to light my burner for $400 dollars, i was at least given the information that the oil tank men failed to install part of the system. so then they came back out.

now my heat works. all that plus various other appointments i keep monthly and p.t. AND an MRI. the mri was very, very enlightening.

here are the notable bits from my results:

i hope this is also incomprehensible for you, because my eyes started glazing over reading this the first time. after a combination of google, consulting my bone professor friend, using a basic knowledge of latin roots/bones, and getting a final confirmation from the physical therapy guy on my last day, i have discovered what this means in simple terms:

my knee doesn’t move correctly when in motion, causing swelling to jimmy hoffa’s fat ass. the kneecap rides too high. “weiberg type III” refers to the shape of my patella but it seems like that’s not really involved in the myriad of problems here, just an observation. the top of my tibia is shaped weird and all of this combines together to cause damage to my cartilage. ooooohh ohhh owww my bones.

the mri itself was no sweat. they pretty much only put you far enough in the machine to get your leg and i just laid there with headphones on for 1/2 an hour listening to classical music. the easiest test you could ever get. requires absolutely nothing from you but the ability to sit still.

here’s what i feel the most relieved about: i’m not crazy. this isn’t the result of me being lazy, out of shape, and pushing myself to exercise more the way that i was BEFORE physical therapy was probably destroying my legs faster instead of helping them. after a lifetime of open disdain from family for my inability to engage in physical activity, telling me to stop complaining about my pain, and waving off my problems as “growing pains” (to be fair, these are real), i finally have proof i’m not a malingering lunatic and my pain was real. i really, really have to underscore that i try not to complain about this much. if i complained about my leg every time it hurt people would treat me like a wilting flower or get so sick of me they give me the “misery” treatment so i really have something to cry about.  i’m going to use this irrefutable proof of my deformity (? that seems like a very drastic word to use in this instance doesn’t it. i’m not really sure to to think of myself in relation to disability but i guess the real answer is that it doesn’t matter and no one cares and the chances of someone pushing me to be more formal about my fucked up leg are near 0. so that’s reassuring.) to uhhhh get better i guess. i’ll find out the next steps from the doctor in a few weeks. see you then!

it’s been a little over a month since i started physical therapy for my leg. and what a heart-pounding adventure it’s been. im really out of shape.

in the interest of sharing my experiences for any other adult who has an out-toe and has no idea whats in store for them, i will tell you what i’ve been up to. maybe someday someone will google their way here and find a little assurance in some demystification of the untwisting process (? actually im not sure if my leg will visibly untwist).

the good news is that this week the doc told me i don’t look like i’ll need to surgically twirl the bone and my gait can be adjusted by continuing physical therapy. great news, because, despite the surgery feeling like a very direct way to address a problem that otherwise will take a lot of hard work and sweat, its probably really expensive and we just had to drop a lot on a new boiler. he does still seem a little weirded out by my skeleton despite his assurances. when you go to the leg doctor, they take your leg and wiggle it in a bunch of directions. my doctor told me my knee was weird a few times. not bad. and not specific. just weird. exactly what every patient wants to hear.

my physical therapy is covered by medicaid and thank god for it; i would actually be extremely bad at trying to correct this myself. the guidance a therapist offers you is invaluable and being physically forced to go to a location ensures i actually do them. the way i walk and move is so weird that i kept needing the therapist to physically re-adjust me until i started to feel muscles stretching in new directions. just knowing which muscles i needed to work on was useful information. so: if you can get physical therapy, i recommend it. my experience has been very positive and i can feel improvements especially to my balance! my balance was shockingly bad prior to this. my poor boyfriend has to be caught near me when i trip over nothing and faceplant onto the pavement.

an average visit goes like this: i arrive, i check in, i dump my purse and my coat on a chair and do 5 (then 10, then 15 as the month went on) minutes on a bike machine. the machine is recumbent so it doesn’t shatter my tailbone like upright bikes do. honestly, this is the most enjoyable activity to me because the way it works your muscles feels GOOD. years ago, i bought a step machine with the intention of using it to get fit and found it very difficult and painful to use regularly (especially in the fucked up knee lol). i had assumed it was just because i was THAT out of shape but it never seemed to get better no matter how many times i used it. now it gathers dust in the basement where it will stay, because it turns out i picked a body destroying machine by accident.

after the bike- wait i forgot. the first 2 days they would have me sit with a hot damp weighted towel on my knee and it was sooooooo good but then they stopped doing it. >:(

some context going forward: i am a 110 lb, 4’10” woman. not a typo. please do not sit on me. i have a history of bursitis in the fucked up knee. i created this chart to show you my various aches and pains, i hope it is useful. honestly the pin is my least favorite one because it makes me limp. it only kinda hurts but i can’t get the fucking thing to move right. second worst was the tooth-ache type pain that went away when they replaced my birth control. so. whatever.

 

anyway, then i do my exercises while my physical therapy guy checks in on me to make sure im doing things right and make small talk. “bridges” and “clam shell” exercises work the ass, which will help my hip bones face the direction they’re supposed to (i don’t remember what’s going on down there. they’re pointing out or down or something). specifically, the gluteus medius, the middle child of the ass, needs to be strengthened. i enjoyed doing the clam shells more with the resistance band; being able to work against something made me feel like i was actually doing some kind of physical work. the hamstring stretch also involves the band.

Tamarian voice: leon, on the floor

leg raises, in which you literally just lay down and lift one straight leg up in the air, were surprisingly difficult at first. maybe difficult isn’t the right word uhhh there was more resistance in my body than i was anticipating. the muscles dictating that action were pretty tight and unwilling to give way. anyway, after a month i can do it with 6lb weights attached.

 

 

there’s a smattering of other random exercises they had me do as well. it seems like we’ve been slowly whittling down my capabilities and needs by throwing things at me and seeing what puts us in the right direction. the very, very low squats completely destroyed every muscle in my body for a weekend so they were adjusted to account for my short height. i can squat much better now. not slavic style yet, but getting there. the ones where i just wiggle my knee up and down or kick my legs while sitting in a chair seemed extremely trivial for me, but now i go in and leave having broken a sweat.

i won’t lie, given the relative low intensity of the work out, i feel a little embarrassed about how hard i its for me. this is stupid, because everyone in the clinic is experiencing the same exhaustion from similar “easy” workouts. however, those people are all over 50; i am the youngest person i’ve seen there all month by a wide margin. i’m hesitant to call myself disabled, as i am to all outside observers a very weird looking able bodied adult woman and to claim that label feels like it indicates a more immediate seriousness to my condition. my knee hurts when i stand for long periods of time and i can’t walk far because my calves start to burn and every time i use stairs it hurts. but is it debilitating? no. does it affect my day to day activities? well, kind of. but what i am really, really worried about is how knee pain progresses. i need to get this done now so i’m not paying for it as an an old geezer. i want to minimize the amount of suffering i experience day to day as a general rule.

anyway i guess that’s it. i have a MRI soon for the knee which should be a very boring experience. they asked me if i had claustrophobia and i said no but after i hung up i was like “do i?” im afraid of literally everything else so i don’t know why this would be any different. guess we’ll see. check obituaries and see if someone died of a terror induced heart attack.

 

note: this is copy-pasted from my tumblr and is therefore formatted like a call for information. on tumblr its reasonable to expect a response; on a personal website not so much. i have been asked by people who are discovering they have the same or a similar problem to take what i learn from the process of trying to get this (apparently very rare) fixed and make it easily available. so cross-posting it here, where its more static, makes the most sense.

that was a lot of words to say: copy-pasted from my tumblr

original title:

very very specific call for information: anyone out there deal with out-toeing caused by external tibial rotation (duck feet from a fucked up tibia) AS AN ADULT?

im putting this out here because 1. there’s like no fucking information on the entire internet about adults who never grew out of a common childhood problem (unlike children, who self-correct by strengthening muscles, my tibia is an inherited condition. mom has it but not nearly as bad) and 2. i just want to know more! especially what im looking at for recovery.

e: im me from the future. this post is so long and boring and navel gazey so i added images in the hopes it might trick you into wanting to share it.

i only just started this process yesterday: after a series of free association google searches stemming from the fear that i had developed peripheral artery disease at age 31, i discovered symptoms i had been attributing to other random issues (pain radiating down leg? i must be bloated and pressing down on a nerve. pain in shins when i walk even for a short while or up a single flight of stairs? i must be out of shape and destroying my body. knees swollen with fluid in the 4th grade? bursitis, etc) could pretty much all be traced back to my fucked up leg.

my right leg (my right) is visibly fucked from the outside and always has been since i was born. the left is as well, although to a much less (and likely ignorable) extent than the right. i’ve know about this forever; my parents at one point took me to a doctor who was like “yeah she’s shaped like a twizzler” but didnt actually recommend any action. therefore, it was assumed by all that there was nothing we could do and i just had to suffer my junji ito uzamaki curse forever.

which would suck because it’s not great. my family was not receptive to any complaints i had about my body hurting growing up (to be fair there’s only so many times you can hear “but it hurts to exercise” from your sickly, pale, bespectacled, dweeby-ass kid before you cant take it anymore) so i just gave up on giving a shit about it. i’m going to start from the top bottom on symptoms/pain:

  • sometimes i walk with a limp because my hip and knee joint would work in tandem to develop a sharp pain that makes putting weight on it hard.
  • during my period, i usually end up with at least a day or two where i get deep toothache like pain in my thigh. its always there, not throbbing, and it just. aches.
  • for some reason my body favors it so when i’m standing i find myself almost completely leaning on it (which just makes it hurt more later). i can feel myself fucking my knees up when i do this because of how it has to shift around the twisted bone.
  • my knees swell up every time i kneel and put weight on them (growing up catholic made this excruciating).
  • walking is a nightmare. i usually try my best to pretend like my shins (specifically) aren’t screaming from mild exertion. i bought a step machine thinking i was just out of shape and a big whiner but it didn’t ever get better no matter how much and how consistently i did it. i though i was just assigned a really dogshit corporeal form that wasn’t built for improvement.
  • dont even think about running, buddy. i flip flap around like i’m wearing clown shoes AND it hurts like a bitch.
  • speaking of which, i also trip and fall on my own feet a lot. the doctor asked me this like “you don’t find yourself falling a lot while walking, right?” and i had to laugh because i eat shit at least 2x a month. i have a huge scar on my foot from last year.

now im about to upload some pictures of my legs. try not to scream. ignore the bruises, i spent all day yesterday/day before completely re-arranging my office so i beat the crap out of my legs lol.

 

here they are together, standing comfortably. i’m using the edge of our ugly tile as a straight edge for reference.

 

here’s the left one. i have no idea if this is normal. the doctor i saw yesterday said it was “less pronounced” on this side. i agree.

 

i look like i’m uploading instructions on how to hokey-pokey. anyway: right leg in. notice how it is, indeed, fucked up when lined up against the edge.

 

and here’s the knee straight. i really thought this was normal and i just had to deal with it for the rest of my life lol. i mean i still might uhhh let’s find out.

I AM LOOKING FOR INFORMATION FOR ADULTS:

pretty much everything online is for kids with assurances that they’ll “grow out of it” and absolutely no info otherwise for the rest of us. now for my QUESTIONS:

-which surgery would be done to correct this?

-i am an american, any idea what surgery cost might look like? (lol ignoring insurance, i want to see if im even close to the ballpark of it being feasible)

-how long is the surgery recovery time?

-can physical therapy correct this? if so, how long would it take?

-can you direct me to more information on living with out-toeing/duck footing/external tibial rotation? how can i manage symptoms?

-does anyone want to study me, because apparently im a rare specimen. im minting myself as an nft or whatever. fuck

ok thank you.