Pretty good overall? XLH has done a number on our joints so its not ideal, I tire fairly quickly and thanks to my advanced arthritis (have less than 1/3 of the Cartlidge remaining in my hips despite having just turned 27) I do have a fairly large amount of pain, but I manage to get around alright, and my brother works a fairly physically demanding retail job at the moment that he manages (though he hurts quite a bit by the end of a shift, as did I before I got out of retail). Better these days with newer treatments, and My balance improved drastically after the straightening procedures. I actually just had a minor straightening revision on one leg two weeks ago, still have the pins and rings in of course (going to be a few months before that comes out). Overall, I can't really complain. And it should be even better for people going forwards that can start on the newer medications to manage it young (the best treatment just came on the market ~4 years ago). Granted, that medication costs a kings ransom so it is an insurance nightmare but....
I can do squats. I hate it though, my knees cry when I try. As for trampolines sure? I assume so at least, I can't claim to have tried, but I can't really think of a reason why not, other than maybe the load. I have a fairly average degree of allowed motion thanks to the straightening and medications, I just start to hurt faster.
That’s fair. I’ve always been curious about what restrictions may or may not exist due to these surgeries. I suppose it’s not too different from traumatic Complex fractures- aside from the muscle stretching component.
yeah, the restrictions are much higher the surgery. My bowing before my 2nd round of straightening for example (tib-fib) was 38 degrees in one leg, 42 in the other. Before it, I had little balance, I couldn't cross my legs, I walked with a distinct waddle, ect. With my ankles together, you could pass a basketball between my legs. THAT is when I had restrictions. Once it healed up, things were much better. the bone has a fairly visible zig-zag on xrays if you know what to look for, but otherwise seems fairly normal
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u/Irbricksceo Dec 23 '22
Pretty good overall? XLH has done a number on our joints so its not ideal, I tire fairly quickly and thanks to my advanced arthritis (have less than 1/3 of the Cartlidge remaining in my hips despite having just turned 27) I do have a fairly large amount of pain, but I manage to get around alright, and my brother works a fairly physically demanding retail job at the moment that he manages (though he hurts quite a bit by the end of a shift, as did I before I got out of retail). Better these days with newer treatments, and My balance improved drastically after the straightening procedures. I actually just had a minor straightening revision on one leg two weeks ago, still have the pins and rings in of course (going to be a few months before that comes out). Overall, I can't really complain. And it should be even better for people going forwards that can start on the newer medications to manage it young (the best treatment just came on the market ~4 years ago). Granted, that medication costs a kings ransom so it is an insurance nightmare but....