Reminder: This is my experience with hip replacement surgery but not everyone will the same experience and some people may have an easier or harder recovery than me.
When you have Spina Bifida, a lot of the time you have something called hip dysplasia, and for those of you who don’t know, it’s a medical condition where the hip socket does not develop properly and does not cover the ball portion of your upper thigh, which often leads to partial or full dislocation of your hip. A dislocated hip can sometimes affect someone’s ability to walk, but it is not dangerous. Unless it starts to cause a lot of pain, it can often be left alone. I was born with both of my hips fully dislocated, and hip replacement surgery on my right hip a few years ago, because it started to give me pain. I have had dozens of surgeries with a lot of pain, but hip replacement surgery was a new experience for me, and it was like no other surgery I have had before. and it is one of those surgeries that I will never repeat unnecessarily. When you have hip replacement surgery, your doctor often will give you a lot of information to help you prepare, but there are a lot of things you won’t know until you experience it. What should you expect if you are considering hip replacement? In this post, I am going to talk about a couple of things that I experienced that I wish I had known before I had it.
You will have zero independence- I have a physical disability and when I had a hip replacement, I had to be non-bearing for three months because I have limited sensation in my lower legs and am not able to walk with minimal pressure like most people. I have had tons of surgeries and know that when I have a major surgery I will require more help, but I have never been so dependent on others like I was when I had hip replacement surgery. I had zero independence for a couple of months because I had hip precautions and was not able to get in certain positions and the things I normally could do independently I needed help doing. There were times I felt extremely uncomfortable because I needed more help getting in and out of the shower than I normally would. I knew that I was going to lose some independence when I had hip replacement surgery because I lose some independence with every surgery, but I was not expecting to not have any at all, and I don’t know if I would have done it if I had known that. I am grateful that I had people in my life to help me but not having independence was probably the most challenging part of my recovery. People who don’t have my disability may not need as much assistance as I do but if you have my level of Spina Bifida, I would prepare for not having any independence.
You will lose mobility that can take years to come back- I remember my doctor telling me how long it’s going to take to recover from hip replacement surgery, which was very inaccurate and the swelling, but I don’t remember a lot being said about mobility loss and if I was told that it was not very clear. If there was one thing, I wish I had known before having hip replacement, it’s that I was going to lose mobility because my mobility loss has made everything in life more difficult and I cannot do a lot of tasks in the same way as could when I had mobility. I can only hope that doctors aren’t conveniently not telling patients about mobility loss, and they just don’t know because it’s so important to know this to be able to prepare.
It may take longer than a year to recover from- When you have Spina Bifida hip replacement surgery recovery often is longer than someone without Spina Bifida because you have to cut the bone, and a lot of people have to be non-wearing for a couple of months when you usually can start walking within hours of having surgery. Before I had hip replacement surgery, I was told that my recovery was going to be one year which was wildly inaccurate because I ended up needing a revision surgery shortly after the original hip replacement which caused some setbacks. Some people may be able to recover in one year but you should always expect your recovery to be a little longer than your doctor says because they don’t always give you accurate recovery times and when you have my level of Spina Bifida you should expect a minimum of a two-year recovery. I have gained a lot of my mobility, but it’s been four years, and I still don’t have all of my mobility back because hip replacement surgery can take years to recover from.
Your mental health may take a hit– When you hip replacement surgery and lose mobility sometimes it can cause a lot of depression which should not surprise anyone because when you lose the ability to do something it’s hard to accept that. My mental health is much better now and is back to what it was when I had mobility, but it took a lot of work to get it to the point and I struggled with my mental health for several years. Your mental health should improve as you recover but that first year can be really hard and negatively affect your mental health and if you are really struggling there is no shame in getting support
You may need a revision- When you have stoma surgery or a joint replacement sometimes people think you only have to go through that horrible surgery once and never need to think about it again. As a disabled person, I know that when I have a joint replacement or stoma it’s not a one-and-done situation and that I may need a revision at some point but people who don’t have as many surgeries as me may not know that. I think we need to do better at explaining to patients that when you have a surgery such as a joint replacement it’s not permanent and that you may need a revision because we can’t assume everyone is going to know that. I ended up needing a revision shortly after I had hip replacement surgery because I fractured my femur, and I was not expecting that to happen. It is so important that we tell people about all the complications because patients deserve to know even if it causes them to change their minds.
It may take some getting used to a new hip– I have walked with two dislocated hips my entire life and have gotten use to it. When I hip replacement surgery and started walking again it never really occurred to me that walking was going to be different because my hip is now in the corrected position. I have had surgeries where I was stuck in bed for a few weeks and I kind of thought it was going to be similar, but it was very different because I got weaker than I normally would and had to get use to a different way of walking.
Hip replacement surgery was my only choice for hip pain relief because my hips are dislocated and there are not a lot of exercises you can do to strengthen your hip and avoid surgery. Exercise is important after hip replacement surgery, and some people may be able to attend physical therapy and avoid surgery altogether, but when you have dislocated hips, it’s not that simple and is not usually a choice because most hip exercises are only possible if your hips are in the correct position, which they won’t be if you have hip dysplasia. Hip replacement recovery was hard, and I hope I never have to go through it again, but a lot of my surgeries are hard because my disability makes it hard, and there is nothing you can do to change that. There are a lot of things that I experienced when I had hip replacement surgery that I was not expecting, but now I have that knowledge, so if I were to need a second hip replacement, there wouldn’t be as many unknowns. If you have any more questions about what to expect after hip replacement surgery, please leave a comment below, and I will do my best to answer.
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