I had hip surgery in July. Thanks to EDS I had a labral tear smoothed dow, capsular plication & an osteoplasty. It is doing well, recovery was amazingly easy.
Fast forward to now... wtf was I thinking with this surgery. I am 5 weeks post-op after my mpfl reconstruction. Once my nerve block wore off I ended up at the ER because the pain was worse than labor (my epidural didn't work right because well effin EDS) and I couldn't even speak. I was sobbing, teeth chattering & my husband had to carry me. Of course it was almost midnight & we were there about 4 hours, in a bed in the damn hallway. They did some shots of pain meds... billed my insurance about $3,500 btw.
I can't lift my own damn leg. I am still in pain & on meds. I am allergic to most pain meds so I have a feeling I will be getting cut off next week because CIIs this long is not what doctors usually do. I can't take anything else really & no NSAIDs allowed. I am supposed to be at 90 degrees by week 6 according to my discharge papers hahahahaha bahahaha good one... I can barely get to 55 degrees.
The nerve pain is unreal. I think it is because of the block. It is all the way down the inner part of my leg. Pins & needles, goosebumps are fricken painful. Part of it is sore, part is numb. My knee itself hurts. It hurts the most right where the incisions are & where the anchors were placed.
I am wearing my brace unlocked, just a few days ago we unlocked it, still on crutches. I can already hyperextend 10 degrees :(
My left patella is now subluxing, surprise!! Damn you EDS!
Anyways today is Rare Disease Day... let our voices be heard
EDS SUCKS!
MCAS SUCKS!
Chiari Malformation SUCKS!
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