Can anyone with hEDS (or any other connective tissue disorder) speak to how your recovery was different? When did you start PT? How quickly did you return to normal activities?
Background: I've had three failed surgeries on one hip - two repaired my torn labrum and fixed an impingement. Third was a cartilage replacement (reconstruction). Still hurts.
I have two young adult kids.
Daughter was a dancer through high school and battled hip pain the whole time. Recently saw Ortho surgeon. MRI showed labrum tear and significant impingement. Until this came up I hadn't realized my problems were perhaps a genetic thing I was passing on. Sorry, kids.
Son was diagnosed with EDS (hypermobile) last year. The geneticist did an extremely thorough evaluation of family history, and she was very interested to learn mom and sister both have hip issues. Said it's very likely we have it too, since our joints are hypermobile. Didn't do full testing for a diagnosis, though.
Daughter's surgeon was very receptive to this info at our first visit. He said that, given our suspicion she has an undiagnosed connective tissue disorder, they would progress her much slower and even approach the surgery differently. I was thrilled and hoped that her outcome would be better than mine, since we are armed with more information now. He even wants her on a walker for 4-6 weeks, not crutches, and wearing a brace for even longer.
However, since our initial consult, everyone blows this off. His PA today in the pre-op appointment didn't mention it but said she can be 50% weight bearing immediately after surgery and needs to start PT right away. I questioned the nurse about this and got a blank stare. Kicking myself that I didn't challenge the PA before he left the room. I intend to send a message to clarify this protocol before the surgery (in 2 weeks). Just wondered what other experiences had been, if there are any other folks with lanky, stretchy genetics here.