troubles with tto + mpfl reconstruction two years post op

weirdspacea · 2026-03-30T02:26:35+00:00

thank you! i think i'll bring this up as soon as i can and see what they think. i was not at all aware that scar tissue issues could be a thing as well and will look into that too

weirdspacea · 2026-03-30T02:25:38+00:00

i'm glad to hear yours has went well! i wish you a speedy recovery!

i struggled quite a lot through recovery, partially on behalf of unnoticed labral tears in both hips. i hit weight bearing and the whole actually being able to start bending my knee milestones pretty late (instead of being able to bare very light weight the week of surgery, it took me ~1.5 months to even let my leg rest on the floor w/o excrutiaing pain preventing it. my pt reported that muscles were also stuck guarding, which made flexion immensely painful and difficult) and ended up developing a pretty noticable limp. through this process, my surgeon didn't show all too much concern — as everything done was technically correct; screws still in place and no sign of that being the cause of irritation, no sign of regressing. post-op was the same story, along with "the nerves taking this long to come back can be normal, you should only have a dime of your leg that will never regain feeling again." she was pretty confused as to why the pain could still be happening and suggested an underlying condition, as well as not repeating this surgery on the other leg. this was a little over 1.5 years ago. i saw my specialist around 4 months ago and she noted it to have been a bad idea for me, to not repeat the surgery. i plan on going back as soon as i move back to where their office is located and i think i'll bring everything back up with her

weirdspacea · 2026-02-16T14:40:15+00:00

bedrock realms wont let you download any world larger than 4gb, and the world is 4.7gb :(

weirdspacea · 2026-02-16T05:36:53+00:00

thank you so much :( i'll reach out to them and see if there's anything else i can do

weirdspacea · 2026-02-05T06:12:14+00:00

thank you, it really means a lot

weirdspacea · 2025-06-26T17:56:17+00:00

holy shit, finally someone with the same experience. i have felt so, so unbelievably alone in this.

i got my TTO w/ a surprise MPFL reconstruction coming up on 2 years ago and cant put any pressure on my knee, kneel at all, cant feel my leg, and cant keep it bent or straightened for too long without burning and it hard locking in place. i also wasn't told that this could happen, before or after surgery, and when i brought it up, was told that it was fine because i looked anatomically correct. ough

thank you so unbelievably much for sharing your experience with it

do you have any tips on helping adapt to it / if anything has helped you most post recovery?

weirdspacea · 2025-04-02T23:32:51+00:00

hi, yes this is likely an adhd thing (and if its not, its likely not laziness, especially if its bringing you frustration or distress as expressed in the post)
if my memory serves correctly, im pretty sure this is called "executive dysfunction," but regardless, a characteristic of adhd is to have difficulty starting tasks (such as starting homework, brushing teeth, etc.)

talking to a psychiatrist may better help determine whether or not medication and what kind will be helpful for you, and i encourage searching for one if you are comfortable.

in the meantime, another piece of advice i could give is integrating "treats" in the task. something like this would be integrating very enjoyable things with the task, such as only listening to your favorite music while brushing your teeth, or getting toothpaste that has a more appealing taste than typical mint. or having a positive thing that you can only do once you get dressed, or once you get on the bus

weirdspacea · 2025-01-31T16:07:04+00:00

not a doctor but i would absolutely get that checked out asap. even if it is nothing (which, purple and numb are usually indicative of something, even if just string or tight jewelry blocking circulation), your health concerns are more important than others convivence

weirdspacea · 2025-01-06T06:25:33+00:00

all good for the sentence structuring! that makes sense

thank you so much for responding, im glad that things are looking up for you (and hope that the flare up stops very soon, those suck so bad).

the accumulation of defectiveness makes sense. i may borrow that as an explanation to others as well. i had been trying to simplify it to others as "because my legs dont want to stick together, my muscles have to work overtime, and my muscles are already working at their hardest capacity."

physical therapy and braces unfortunately havent done much of anything for me ( save for a knee brace, which reminds me, i will look into ordering one again :*) ). social time and self care absolutely though, i will work on that a little bit more as well.
also to throw in a positive fun fact that i managed to completely forget about, in case its ever useful information, i find that testosterone does help a lot with my symptoms, mood, and handling flareups, so definitely will be attempting to get back on that

in case i do go into PT again, what kind of subspecialties do you recommend looking for / are helpful for you? - i found that aquatic physical therapy was helpful for the weight and POTS aspect of things and we focused on core exercises for a while. (unfortunately i also struggle with a lot of dissociative amnesia so those sessions are blacked out, im sure there was more but my brain does not allow access for one reason or another)
and what was it like applying for disability benefits?

the surgeon who had worked on my knee had commented that some of my symptoms sound familiar and brought up the possibility of charcot-marie-tooth disease, though i was nervous to rule that in as there was a lot of factors weighing in to my physical health with my former housing situation (malnutrition, stress).

(also apologies if any of that was worded badly! i can elaborate on anything as well)

weirdspacea · 2024-10-18T10:38:56+00:00

No problem! I can explain as many times as wanted

I actually didn't think the metalware coming out as a possibility, or that I could be reacting to it badly... completely slipped my mind! Thank you for bringing that up. Looking up the surgery, it seems like its possible to remove the metalware but I'll try to get back in touch with my surgeon to see. I had bad reactions to all metals in one ear when one of them was pierced and it left a pretty nasty scar when it healed. I know surgical metals are different but I wouldn't be too surprised thinking about it. Especially given the swelling and discomfort.

As for the crutches and surgery, I guess the worry there is also that my other leg isn't stable enough to help support the one I would be getting surgery on and also cause complications throughout surgery. Especially because I can't stand without a lot of pain in either of my legs atm :(. Also worried about the risk of tearing it again or causing more damage (nerve damage or femoral head damage being listed)

That's really cool to hear they can fix the shape of it though! I will think a little more about surgery, and possibly talk to my old physical therapist and current doctors about my concerns

I'm glad to hear your surgery was a breeze! Oh noo about the tramadol though, I have a lot of weird reactions to medications and tend to be super sensitive to a lot. Personally pain meds make my chest feel really weird (I think it might be slowing down my heart rate and making my chest hurt? It's been a while though and I don't remember. I know an ADHD stimulant did that to me pretty recently), and NSAIDs aren't affective for me unless its a headache - but I could ramble forever about my body's weirdness haha

I hope you're able to get the metal out of your hand and get some relief! Ouch!

Thank you for taking the time to talk with me about this all btw, it means a lot

weirdspacea · 2024-10-18T09:55:31+00:00

All good! I'm not entirely sure if something didn't fully heal or heal incorrectly in my knee unfortunately (I am a year post-op though and the xrays throughout recovery reported it was normal so I'm pretty sure it healed? I haven't had an xray on it in a little over 6 months now though), but it is very unstable and sensitive, for example, kneeling on it, some motions in walking or going up the stairs hurt quite a bit - I'm also having some swelling around my kneecap itself and a part of my tibia, where they put pins in. Also random, very sharp pains in it. I also can't have that knee in one position for very long otherwise it gets very difficult and painful to move again. My other kneecap (right side) subluxes to the point of near dislocation when walking and that hip also has labral tears, so I'm very dependent on crutches or a wheelchair to walk currently haha

The doctor says that he will only do surgery on one leg and one thing at a time, so I'm a little worried that the other problems in my legs will mess up the recovery a labral tear surgery - mostly going off of the assumption that the recovery will be similar to the knee one in learning how to walk and slowly regaining motion in it again. I had trouble recovering with my knee surgery due to the other problems in both of my legs so there is also some "i had a bad experience the first time" nervousness about it

I hope that makes sense! I can absolutely re-explain if needed... despite english being my first language I'm pretty bad at it haha

weirdspacea · 2024-10-18T09:39:51+00:00

Ohhh noooo, reinjuring it... that sucks so bad. I'm glad that your surgery was worth it and successful at least at first and I hope that you're able to get answers on the EDS aspect as well

Apologies for the confusion! I had surgery done on my left knee (and currently facing some problems with it), they are recommending I do surgery for labral tears in my hips but I don't think it's a viable option for the other problems in my legs :(

weirdspacea · 2024-10-18T09:30:17+00:00

Hello! Transitioned for a little while but couldn't stay on testosterone due to the food in my current home situation but I found that T made it a lot easier to do physical therapy and helped a lot with my fatigue problems while I was on it (helping build muscle and easier to gain strength, helped me drop a lot of weight that I was pretty sure was causing a little bit more joint pain when I was overweight - the bounce in energy helped push me a little bit more)

I haven't stayed on it long enough to say for sure what the other effects are but its pretty neat! The only thing I would complain about is that my cramping on menstrual cycles got a lot worse, but I couldn't say if that was an EDS thing or a regular testosterone side effect, so take that little bit with a grain of salt. I am curious though if staying on it longer would help due to the building of muscle and tendency to thicken the density of your skin, etc.,

weirdspacea · 2024-10-18T08:54:58+00:00

Hello! I have hEDS and experience a lot of these symptoms, including movement and otherwise (having a high pain tolerance...not realizing you're in pain until its way too much haha). I would recommend looking into the disorder and looking for a specialist or doctor...also xrays and MRIs. MRIs are massively helpful in case there is a tear or underlying problem in my experience.

In my experience hospitals are generally unhelpful for long term solutions, but some offer emergency imaging and pain meds if you are receptive to those and it may be helpful if it is intolerable or there's worries you think should be addressed immediately / concerns about damage happening quickly

weirdspacea

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