United StatesI'm a long time "lurker" here and am very impressed by the supportive community you've built. It is informative to see other peoples' challenges and stories and what medicine is able to do to help them these days. I figured it was time to introduce myself and share my own story.
At age 7, I began walking with a limp. While it took awhile to determine the cause, I was eventually diagnosed with Legg-Calve-Perthes disease in my left hip. I had that limp for years and was made to sit out from PE and other activities (which mostly suited me as I was never an avid athlete). Eventually I did heal somewhat and got on with things, but the doctors at the time told me I would likely need a hip replacement earlier than is common. Almost every doctor I talked to also was surprised that I had good range of motion and functionality, so I thought I had recovered fairly well, but I was told I should never run or do any kind of high impact activity.
I went onto high school marching band and played the tuba which ended up being good exercise, but I often found myself in pain, no doubt from carrying a 40 pound instrument while marching along at various speeds. Over the subsequent years I've had difficulty with exercise and my weight has fluctuated. While I've always had some degree of hip pain, it has at times been barely noticeable and other times almost debilitating, but I have always been able to walk at least enough to get around to where I need to go. Some days I can do a several mile hike and other days I don't want to get out of bed (not that I can't, but that the pain makes it difficult).
I actually spoke with a surgeon in April of 2021 who would do the surgery (I was 35 at the time), but he didn't seem especially keen to, and neither was I. I wasn't actually in much pain at the time and it seemed like drastic and irreversible step and that I was too young to take it on. Ultimately I did not go through with a replacement. I had a nearly pain free 2 years after that, but I also wasn't terribly active, so overall I felt like I was right to at least delay.
I've also dealt with lifelong anxiety and depression, no doubt exacerbated by the pain and disability. In a recent attempt at getting those under control, I've found myself back at the gym and trying to find ways I can exercise without bringing on the pain. It's been a mixed success; I've lost a good amount of weight and improved my mood, but I am dealing with more pain than I have in the previous year or two. Overall, I'm in about as good a shape as I've ever been in my life.
And so I don't really know where I stand these days. I still can have good days where I'm nearly pain free, and I still have days where the pain is distracting me. I can go to the gym and use the stair climber machine and go for 100 flights of stairs (a feat even some with 2 good hips would have trouble with), but I'll likely pay for it for 2-3 days after.
What do I worry about? Lots of things lol. Getting anxious during recovery with no way to get outside and walk which is one of the best ways I find to help calm down. In some sense I'm on my own, but my parents are available and very willing to help me through a recovery process. I also had a friend volunteer to let me stay with him and his wife if needed which after some thought is an amazing offer. I believe I also have other friends and relatives who would be willing to help me, so in that sense I actually realized how blessed I am.
Complications are a worry obviously, though I tell myself that I'm relatively young and in good shape so I'd think I'm less likely to encounter them. From what I can tell, I've also got a very experienced surgeon which is very important.
But the main worry is revision. I'm currently 37 and so I wonder how long I would get on a replacement. I've spent years reading here and in medical journals that I find about them. I know that while hip replacement in those under 60 used to be relatively unheard of, it has become more common in recent years and there are people on this forum around my age and younger who have gone onto some impressive recoveries. I've also followed hiprunner.com for a long time now because I imagine that those people are testing the limits of modern joint replacement. And while I have no desire to ever run a marathon, I'm truly impressed by them and the people here who have gone on to do that after hip replacements.
Still, I can't help but worry about the future. I actually had a coworker who had one of those vanishingly rare young hip replacements back in the 90's when I believe he would have been in his early 40's. He managed to get about 22 years on it, but it did wear out eventually and had to be revised. I'm pretty afraid of one major surgery (and especially the recovery), and that there might be more down the line is harder to accept. I know that the materials these days are far better than they were back then, but I wonder how long one can realistically expect to get out of one.
On the other hand, what would a success look like for me? I don't know how much one could hope for, though as I said I have seen some impressive results here as well.
Obviously, being pain-free would be the overall goal. I know that nothing in medicine is guaranteed, but hearing people say that they forget about their hip is something I dream about; even on my good days, it's always been in the back of my mind.
So pain-free is goal one, but I wonder what is possible? I'd love to be able to lift weights that involve my lower body; I mostly skip those now, but I'd think it could be done after a good recovery since it would still be low impact. As I said, I've never been able to run and I don't have any desire to start, but being able to ride a bike for more than a few miles would also be great. My family has talked about group bike rides and at the moment, I'm a little reluctant about it only because of the pain; otherwise I'd love to join them.
As I said, I don't really know where I stand these days. Right now I'm mostly trying to keep my weight under control (something I've had a lifelong issue with) and focus on finding upper body workouts along with the gentlest possible leg workouts, but the issue remains.
At age 7, I began walking with a limp. While it took awhile to determine the cause, I was eventually diagnosed with Legg-Calve-Perthes disease in my left hip. I had that limp for years and was made to sit out from PE and other activities (which mostly suited me as I was never an avid athlete). Eventually I did heal somewhat and got on with things, but the doctors at the time told me I would likely need a hip replacement earlier than is common. Almost every doctor I talked to also was surprised that I had good range of motion and functionality, so I thought I had recovered fairly well, but I was told I should never run or do any kind of high impact activity.
I went onto high school marching band and played the tuba which ended up being good exercise, but I often found myself in pain, no doubt from carrying a 40 pound instrument while marching along at various speeds. Over the subsequent years I've had difficulty with exercise and my weight has fluctuated. While I've always had some degree of hip pain, it has at times been barely noticeable and other times almost debilitating, but I have always been able to walk at least enough to get around to where I need to go. Some days I can do a several mile hike and other days I don't want to get out of bed (not that I can't, but that the pain makes it difficult).
I actually spoke with a surgeon in April of 2021 who would do the surgery (I was 35 at the time), but he didn't seem especially keen to, and neither was I. I wasn't actually in much pain at the time and it seemed like drastic and irreversible step and that I was too young to take it on. Ultimately I did not go through with a replacement. I had a nearly pain free 2 years after that, but I also wasn't terribly active, so overall I felt like I was right to at least delay.
I've also dealt with lifelong anxiety and depression, no doubt exacerbated by the pain and disability. In a recent attempt at getting those under control, I've found myself back at the gym and trying to find ways I can exercise without bringing on the pain. It's been a mixed success; I've lost a good amount of weight and improved my mood, but I am dealing with more pain than I have in the previous year or two. Overall, I'm in about as good a shape as I've ever been in my life.
And so I don't really know where I stand these days. I still can have good days where I'm nearly pain free, and I still have days where the pain is distracting me. I can go to the gym and use the stair climber machine and go for 100 flights of stairs (a feat even some with 2 good hips would have trouble with), but I'll likely pay for it for 2-3 days after.
What do I worry about? Lots of things lol. Getting anxious during recovery with no way to get outside and walk which is one of the best ways I find to help calm down. In some sense I'm on my own, but my parents are available and very willing to help me through a recovery process. I also had a friend volunteer to let me stay with him and his wife if needed which after some thought is an amazing offer. I believe I also have other friends and relatives who would be willing to help me, so in that sense I actually realized how blessed I am.
Complications are a worry obviously, though I tell myself that I'm relatively young and in good shape so I'd think I'm less likely to encounter them. From what I can tell, I've also got a very experienced surgeon which is very important.
But the main worry is revision. I'm currently 37 and so I wonder how long I would get on a replacement. I've spent years reading here and in medical journals that I find about them. I know that while hip replacement in those under 60 used to be relatively unheard of, it has become more common in recent years and there are people on this forum around my age and younger who have gone onto some impressive recoveries. I've also followed hiprunner.com for a long time now because I imagine that those people are testing the limits of modern joint replacement. And while I have no desire to ever run a marathon, I'm truly impressed by them and the people here who have gone on to do that after hip replacements.
Still, I can't help but worry about the future. I actually had a coworker who had one of those vanishingly rare young hip replacements back in the 90's when I believe he would have been in his early 40's. He managed to get about 22 years on it, but it did wear out eventually and had to be revised. I'm pretty afraid of one major surgery (and especially the recovery), and that there might be more down the line is harder to accept. I know that the materials these days are far better than they were back then, but I wonder how long one can realistically expect to get out of one.
On the other hand, what would a success look like for me? I don't know how much one could hope for, though as I said I have seen some impressive results here as well.
Obviously, being pain-free would be the overall goal. I know that nothing in medicine is guaranteed, but hearing people say that they forget about their hip is something I dream about; even on my good days, it's always been in the back of my mind.
So pain-free is goal one, but I wonder what is possible? I'd love to be able to lift weights that involve my lower body; I mostly skip those now, but I'd think it could be done after a good recovery since it would still be low impact. As I said, I've never been able to run and I don't have any desire to start, but being able to ride a bike for more than a few miles would also be great. My family has talked about group bike rides and at the moment, I'm a little reluctant about it only because of the pain; otherwise I'd love to join them.
As I said, I don't really know where I stand these days. Right now I'm mostly trying to keep my weight under control (something I've had a lifelong issue with) and focus on finding upper body workouts along with the gentlest possible leg workouts, but the issue remains.
a lot limpy to a little limpy. My knee is in a pickle now though and I'm fully limping. Bring on the surgery!! I'm ready.
