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When I started to have hip pain at the end of 2020 I decided to get it diagnosed because it was disrupting my life and it wasn’t something I was willing to live with if I didn’t have to. I have hip displasia which means my hips are dislocated which is totally harmless and often nothing needs to be done about it unless it starts to give you pain. My doctor told me that the only option for less hip pain was hip replacement surgery so I went ahead and did it in early 2021 without a clue of the type of surgery I just signed for because I have never had any sort of hip surgery so I didn’t know what to expect. I knew it was a big surgery because my doctor told me that before I went under the knife but like most surgeries there was a ton of stuff that was sugar-coated or left out completely and even doctors who spend years studying a condition don’t fully understand how our disability affects us but often get recovery times totally wrong. I have had major surgeries before but it’s been nothing like hip replacement surgery because it was a truly a horrible surgery that I was not ready for and would not repeat unless I was in terrible pain and even then I’d think about it. When I signed up for hip replacement surgery I had no idea what this surgery entailed because I have never had any sort of hip surgery before and in my mind, it could not have been worse than anything I have ever gone through but I could not have been more wrong. Before I had hip replacement surgery I knew it was probably going to improve my life but what I did not understand is the pain it would take to get there and if I truly understood what this surgery entailed I don’t know if I would have gone through with it. In this post, I am going to talk about what I wish my doctor would have been more clear about before I had surgery.
How inactive you’re going to be– Before I had hip surgery one of the things that were not clear to me was how inactive you’re going to be for an entire year or more. I was told that recovery will be about a year so that part didn’t come as a shocker to me but what I didn’t know was that my leg was going to be basically locked and pretty much all forms of exercise were going to be impossible because my leg wouldn’t extend. I am willing to bet this is a common thing because when it happened my doctor was not shocked and I am assuming it was something that was just left out and not made super clear. If you are only going to be down a few weeks and can easily rebound that is one thing but if you are going to be down for several months to a year or more it’s really important that you understand how much your activity will go down, especially if you have a disability where other things may be affected by it. I think I would have made a different decision if I would have clued into the fact of how much my mobility would be affected because it has affected my health in more ways than just loss of strength. I have had almost daily constipation struggles because I can’t move to the extent I could before surgery and since I use physical activity to help keep everything moving I can’t have bowel movements as effectively. I have not been able to use exercise as an effective tool and have had to double up on laxatives so I can kind of get something to stay out of the hospital. I was given laxatives after surgery to make it easier and to prevent constipation which has helped me avoid any serious problems but it’s not the same because I can’t do the same types of exercises I was before surgery that seemed to help. I didn’t have any problem before surgery and I have tried everything to fix it but I don’t think I will see any improvement until I can start to move better.
You will be in pain for months- In previous surgeries, I have had pain for no more than a month so that is what I was expecting but with hip replacement it’s different and you have significant pain for several months. My doctor could not have known exactly how painful hip replacement surgery would be without ever experiencing it and I didn’t expect them to but at the very least I could have been told it was a very painful surgery and I was not going to bounce back in a few weeks. I had many sleepless nights because the pain was too intense and it drove me crazy but if I would have been told this ahead of time I would have been able to better mentally prepare and be in a better state mentally. I have bearable pain now but I still have pain a year after surgery which would have been better for my mental health if I would have known ahead of time. For the few months I had such high pain levels that was going down at such a slow rate that I didn’t see an end and my mental health tanked because of that. It’s really important you tell people when they should expect high pain and for about how long because when you are expecting higher pain it allows you to better mentally prepare so your mental health doesn’t take a hit.
Life is three times harder than it has to be- When you have a physical disability and your life is already extremely difficult it’s hard to imagine that it could get more challenging but it always can. I never realized how much I used my hips for even the simpiliest tasks and how much harder life was going to get after surgery. I can’t workout in the same ways because most of my workouts require me to move my legs and I can only move one so I have had to look for new workouts that don’t require leg movement. I never even thought that getting a drink of water could be so difficult because it never has before but now it feels like a workout. I can do most of the tasks I could before I had surgery but the way I do them is different because I can’t rely on both of my hips and it takes me three times as much effort as it did before surgery.
You may need more assistance- In this first few months of hip replacement recovery, I fully depended on someone else to help take care of my basic needs because I didn’t have the strength to do it myself. In previous surgeries, I would only need my mom to help me but hip replacement was different because I couldn’t rely on one of my hips to help with a transfer which is what I would normally use to help with a transfer. For the few months, I had a lot of hip precautions and was not allowed to twist or bend over for the first twelve weeks, and as annoying as that was it made transfers impossible to do on my own. My mom usually would help me after a surgery but after hip replacement, I needed help from more than just one person and I needed it from both of my parents because I couldn’t do most of the heavy lifting like I normally would. It felt kind of awkward to get help from two people and one that usually wouldn’t but sometimes you do what you have to in order to be safe!
Walking was going to be different– I have been on bed rest before and have been able to bounce back pretty quickly and for some reason, I thought this experience would be like that. It didn’t dawn on me that they were putting my hip in the corrected position and that I would have to find a new way to walk until I after I had my new hip. Walking takes time and lots of therapy before you get used to which was something I didn’t think I needed before surgery but now I realize it was totally necessary and you shouldn’t skip therapy.
I would lose feeling in my leg- When I had surgery they put a nerve block in my leg to help with the pain that usually wears off in a day or two which it did but what I noticed was I also lost total feeling in the upper part of my leg. I am assuming it was because things were moved around during surgery and it had nothing to do with the nerve block because as I get stronger I have regained some of the feeling I had before surgery. Loosing feeling is not a huge deal for me because I am used to not having feeling in certain parts of my part but this was different because it was on a part of my leg that I can usually feel. Having no feeling has benefited in some ways because getting stitches removed weren’t as painful as it normally would be and the couple of sores I’ve had since surgery were painless so in same ways I am grateful for it. It can be annoying at times because sometimes I will get an itch but when I go to scratch it I feel nothing so it’s hard to get relief.
I have less pain since having hip replacement surgery and don’t regret doing it but it’s not at all the surgery I thought I was signing up for. I don’t expect doctors to know every single outcome for every surgery but some things I know you had to know beforehand and chose not to tell me. I have no complaints about my surgeon or the work that was done because they were fabulous but I do wish it was made more clear to me of what kind of surgery it was so I could better decide it was right for me. I don’t know if I would have done it if I knew I was going to be constantly frustrated for a year or more and that life was going to be three times harder than it normally would be. Hip replacement surgery is a common surgery that anyone could need but when you have Spina Bifida it’s different because your hips are dislocated and doctors have to cut the bone so it’s not your typical hip replacement. Hip surgery is not the same for everyone with Spina Bifida and some full-time wheelchair users may have a shorter recovery becuase you might not need a full-on hip replacement to get relief. Hip replacement was a truly horrible surgery and one that I hope I never have to repeat but let me be clear that not everyone will have the same experience and it doesn’t mean I had a bad experience. Some surgeries are just horrible and you just have to get through them to improve your life. What was your experience with hip replacement surgery?
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