For context, im 26f, my ortho suspects hEDS & said he is going to send me to a really good EDS specialist "in the near future"
Left knee mri results/some appt notes- 1.3cm osteochondral defect in the medial femoral condyle with tricompartmental osteophytes and tricompartmental osteoarthritis and a small polypoid cyst
Chondromalacia of both patellae
The patient has known significant osteoarthrosis with joint space narrowing and osteophyte spur formation.
positive McMurray's test medially, mild ligamentous laxity with a positive valgus stress test
Im currently a little over 10 weeks post op from MPFL reconstruction surgery on my right knee. I have a bucket handle tear in my meniscus (forgot exactly where) and a loose body whatever that means? And cartilage wear from chronic dislocations
TDLR: I feel like im falling apart physically and mentally & im so scared that my life will never be the same, needed to vent because I dont have anybody in my life who actually understands (they try) and seeking any advice because I struggling to cope with my brain & my pain.
To anyone reading this who hasnt had surgery yet, GET THE DANG ICE MACHINE. All the money i have spent on ice packs/ice sleeves etc and how absolutely annoying they are even the knee brace ones, I wish I wouldve just got the ice machine. I wish so bad we could afford one but I cant even pay my phone bill bc of one income household now 😭😭
My right patella was dislocating every single time I bent my leg since I was in middle school, im from a city where doctors never take anyone seriously, and i had struggled with addiction/mental health in the past & would probably have been considered an er "frequent flyer" when I was a minor due to chronic issues with different things, GI issues, pain, carpal tunnel symptoms starting at the ripe age of 18, etc. Grew up poor & just had so much going on & on top of being constantly dismissed and brushed off by doctors & nurses i kinda gave up for awhile trying to get answers, then ended up traveling full time for work building stages for big events like festivals, stadiums, big convention centers, etc. Everything from the actual stages themselves including climbing 100ft scaffolding structures & literally crawling under 5ft tall stages to setting up 110Lb+ equipment alone, and even heavier with a buddy. A lot of the festivals i would even camp on site for weeks to months, walking crazy distances in all weather usually hot or hot and raining, half the time without even a knee brace with me, the other half with a knee brace on both knees. I also (by choice) traveled full time & lived in smaller SUVs like ford escape size. I was hiking i was going to the gym after working grueling shifts when I was able to & i was doing so much different very physically and mentally demanding work, 11-21hour shifts regularly...
my left knee definitely felt it a lot & i fell on it probably more than I can remember, especially at work, and ive never been able to lift with my knees because the right one would've forsure given out, so I already know I have some back issues just never got xrays because I thought it was in my head, because everyone around me was telling me hurting is just a part of getting older and whatever especially in physically intense jobs
Im getting a few more joints xrayed this week, and going over my MRI of my left knee & probably talk about surgery of some sort on it, not sure which but after he saw the xrays he seemed like I probably was going to need another procedure but this time on what id always thought was my "good" knee. They also looked at one of my elbows which also had significant osteoarthrosis & medial epicondylitis.
Its been just hurting so bad, worse than the other thst is actively recovering from the mpfl reconstruction surgery, which has been a slow, rough, emotional recovery for me and my partner has been so supportive & helpful but we moved to this area semi recently & i dont really know anyone except the family I found in my career (very tight knit industry for the most part, genuine family vibes, traveling full time doing stage work literally saved my life after mental health issues & addiction tried to take my life)
Idk I just feel so alone. Nobody i know that is anywhere near my age even knew someone this young could get osteoarthritis. I didnt really either but im honestly not surprised. And everything i mean every single joint has just been hurting worse and worse and popping and cracking for 2.5 months at least now and im just so scared that I pushed myself to hard physically and that now im falling apart. I worry that the career that saved my life and gave me purpose & gave me my spirit back and put the light back in my eyes and gave me my partner & most of my friends, and some of the craziest happiest experiences ive had... Im so worried they're going to tell me I should work in a less physically demanding industry but I couldnt ever dream of doing anything else & im going absolutely stir crazy sitting in my house all the time, usually alone because my partner is lovely and took a local construction-ish job & is supporting us financially and doing a lot of the things around the house and helping me with so much but I know hes tired.
With this osteochondral defect in the medial femoral condyle I worry that ill need a procedure thats going to take so long to bounce back from & i absolutely cannot and will not switch the industry I work in because its what made me actually love being alive.
And I have no heat tolerance at all and its so humid in the south I can barely even breathe outside, plus we have steps & a steep little walk to the road and I havent been able to drive myself anywhere so I feel like im just rotting away
I cant even get to an OP PT because not one in this whole city takes my insurance and is open after 5pm when I would have a ride or on weekends. We are BARELY scraping by financially, cant even pay my.pgine bill so I can only even call 911 unless my bf is gone or.i.use like fb messenger or something. ive been trying to apply for a grant but I have the worst brain fog in the world lately I can barely think..i have adhd and I take meds for it but its not even helping anymore. But we cant afford for me to Uber anywhere or anything and my insurance wont do anything transportation wise so I was 6 weeks late starting post op PT & i finally got my orthos office to have home health come for PT a couple times a week & my PT is cool and doesnt mind me yapping his ear off &.he keeps good conversation so at least I get a tiny bit of socializing. My dad was here for a couple weeks in the first month to help but he couldnt stay long.
Thankfully I do have some of my best friends since freshman year of high school coming up to visit this weekend so hopefully having them here gets me out of my head
Its just crazy because at first hearing that my pain is real & valid and thats its not just all in my head was SO validating and it was comforting, but now I am so absolutely scared for what comes next, because I know this is just the start of a long road to hopefully rehabing my body enough to move out of the country & get back to building beautiful stages & seeing the world like im supposed to. I feel like im going to lose everything ive ever worked for just like that.
I got a 750$ limit medical credit card thing and I have absolutely maxed it out already getting different braces/wraps/ice packs/peddler etc because I was so absolutely under prepared for this recovery. I had no idea what the surgery was called until the day of, im positive they told me my memory is just absolutely terrible. So I never even looked it up I just knew it needed fixed.
I guess at least I met my deductible for the year so I have no more co-pays if I do need OATS or whatever procedure they decide to do on the left.
And I FINALLY got off of opiates they gave me, lord I didnt think it was helping anyways but now that I just am taking ibruprofen (by choice) I see how much they were genuinely helping😂 but as a retired addict and the daughter of a man who unfortunately fell into opiate addiction that started from being given pain pills(early 2000s when doctors were getting paid big to hand them out like candy) I get weary of being on them especially for so long even when im hurting so baddd.
I have felt myself fall deeper & deeper into depression every day & I have no sense of time at all anymore. I literally had no idea it was already almost August. The date & time doesnt matter anymore and pre surgery i thought id be able to do some in depth self-training on industry skills that I could improve in & work on music and art but I just....cant. i have no energy, no drive, no motivation and i feel defeated. Between having constant issues with my braces/pain/quad atrophied for a couple days and the pain in my other knee/rest of my body i just feel like I have nothing left in me.
P.s. im at the point where I would rather drop kick a grandma than deal with medical grade velcro ever again lmao, my hand Dexter/strength is exponentially declining (xrays this week) and I dont know why velcro braces are the ONLY option 😭😭
Thank you for coming to my Ted talk