Jaye

I am 48 years old and had a Salter osteotomy at two years old. At 10 years old my leg was an inch shorter than the other. I don’t know the name of the surgery that was preformed I only know I was cut on the outside of my thigh and a rod with steel plates were put in and later removed a year later. The leg was the same length for about 7 years, or that is when I began noticing I was standing with the leg bent and leaning in towards my right side. (Left hip was the one with the surgeries) Now my leg is a half an inch shorter and the pelvis is twisted a half inch.

I lift weights and exercise daily. I have always had a certain degree of pain, or discomfort. I am however experiencing more pain and discomfort. While working out doesn’t hurt, walking long distances, which aren’t long for others, or sitting more than a half hour at a time does. Everything I research online tells me about arthritis for “normal” people.

I am sure I have osteoarthritis to some degree but the research results aren’t in the same area. Probably because my hip isn’t in the right area as everyone else is. I’m not really sure I want to risk surgery at this point. My fear is if the hip is replaced and put in the right place how is that going to effect my pelvis and nerves.

Will I feel different being normal?

Will it be uncomfortable to be like other people.

Does that make sense?

I am also flat footed. The pain is in front where my hip is. You can see the difference if I were to show you, it’s in back of me, on the outer left side of my but. My lower back hurts. I have a lot of muscle stress on the left middle part of my spine and shoulders. I get a massage monthly and they said they can not completely relax the muscles they tighten right back up. My knee on the inside hurts my shine and ankle. It’s all related and the flat feet have a lot to do with it as well. I’m wondering if anyone has had this surgery and how they are doing/any other related surgeries…where and when I may be heading in the future.

I’m not a big surgery type of person so I’d like to hold off as long as I can. My oldest in getting married in September and nothing is going to stop me from dancing up a storm…I’ll pay the next day but that’s fine with me. Any help or shared stories will be very much appreciated.




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  1. Trish says:

    This sounds very similar to what I had done at 13yrs and 15yrs of age respectively. I am now 48. I practice hot yoga 5 times per week and I also have a super physiotherapist. I take a six week (one session per week) course with her ever 12-18 months. I also took a 10 week (once weekly) course with a Rolfer.
    Although I am far from cured, I have no pain in my knee or shin any more, although I do still have some pain in my hip and lower back.
    Again like you my condition does not inhibit me – it’s the next day that I pay for spending too much time on my feet.
    My recommendation is start with rolfing. This will get you onto an even keel – literally-. Follow this with more gentle exercise – swimming or yoga. Finally go to your physio and have her tweak the remainder.
    Hope this helps.

  2. Liz says:

    Jaye,

    I’ve had multiple surgeries, pins, plates (from age 4- 7) and most recently left and right hip replacements. The left side in 2013 and the right side in 2014. I had congenital hip dysplasia or congenital epiphyseal dysplasia, I am 35 years old now and I am amazed at the difference the hip replacements made, in regards to pain. I think after living my whole life with it and arthritis i eventually didn’t know the difference it was just the way it was. I was used to the pain, unless i walked more than usual or exerted my own limitations then i would most definitely feel a greater pain and would not be able to sleep at all. My normal range of mobility was very limited, for example, if i wanted to step up into the normal, what is it 6″ sidewalk? and there was no car or wall or something i could hold on to, i would have to first walk up to it then stop in front of it and once i had my balance i would slowly step up. I always went up the stairs having to step up with one foot then bringing the other one up next to it, i could not go up with just one foot. No riding bicycles, no running, working out was not really an option so i made sure my weight stayed at 140 or less, at 140 i would start to feel the difference in pain. I was 5’5″, i say was because after my hip replacement i am now 5’6″ :) I guess all I can say is i wish I had done it earlier because not only was my mobility limited but my life was severely limited. The pain after surgery was bad but not too bad, the worst part was making your muscles strong enough to walk, to move again. Within 3 months I was back to “normal” a much better normal. I still have limited mobility but that is not due to the joint it is due to my muscles, they have never been able to move more that just a few inches for 35 years so i can’t expect them to from one day to another but gradually and with exercise, i know it will get better, already i walk up the stairs at an impressive speed, in my opinion lol.. without having to put both feet on the same step, and sidewalks are no longer my enemy haha.. I’ll eventually have enough range of motion to ride a bicycle, that is one of my goals :) I wish you the best, in my opinion you’ve lived in pain for too long. Don’t be scared. Nobody understands your pain , so many times i wished i could show people just for a few seconds what my pain was like because I never wanted to do anything i just wanted to be home and i wanted to rest, going to work was such a mission, from the time i woke up, with my joints feeling like they were frozen/fused to the walk from my car to my desk, by the time i sat in the chair i would exhale deeply and just sit there thinking “i made it”. When it was time to leave i would stand up slowly as my joints felt fused and stuck again and i would just stand there for about 10-15 minutes moving my legs and getting them ready for the walk to my car, holding on to the walls as i walked away because i was not yet fully “mobile”. I was so happy when it was a hot day because the hot seats in my car made my hips feel so much better after sitting at work all day. Well, I don’t know if my little story helped but just know that they’ve done this many times, you’ll be ok, good luck. You’ve been through a lot already, a hip replacement is a piece of cake :)

  3. Mimi says:

    Yes, get a hip replacement! It is life changing for the better for sure! I’m 61 and they started surgeries/procedures on me (I think about 4 of them) around age one and continued until about age 10. I avoided doctors until I was an adult. After I had my third and last child around age 30, I had such a lack of mobility (leg atrophy) and was in so much pain and I couldn’t sleep enough so I finally gave in and got a hip replacement. It’s been amazing! As the other writer said, it’s a piece of cake compared to what you’ve been going through!! I’m still working on getting over PTSD from the early hospitalizations in the 50’s and 60’s. My parents weren’t allowed to see me while I was in the hospital back then. One time, maybe my first surgery, I had both hips dislocated and put in chinese splits/traction (for about 6 weeks I think), so I have dealt with an abandonment issue in my life. But I can not complain much … I have been happily married to the love of my life for 40 years and we’re expecting our 9th grandbaby! To finish, my story with pain sounds very similar to yours. Then, after my hip replacement, I began to have low back issues. The surgeon made my legs almost the same length for the first time in my life during the replacement, and I believe the disc issue was due to compensation. I had a discectomy/laminectomy (microsurgery) on L5/S1, which has been successful. I will need to do regular/almost daily non weight bearing, full body strengthening exercise for life. At this time I mainly do warm water therapy pool classes, elliptical machine, and therapy ball exercises. I go back to PT occasionally for a refresher. Walking very far has never felt great to me, but I’ve started using walking sticks and that helps for when I have to. (Can buy at a sporting goods store). I can ride a bike and enjoy that a lot when the weather is nice. I’ve never been an athletic person, I suppose because of this congenital hip, but I have to keep trying every day to be more active than I’m inclined to be, even small ways. I have to try to consciously keep my muscles relaxed. I have gotten weekly massage for years. I deal with back pain more than anything, but can keep it in check pretty well by doing these things. The hip is great. I encourage you to do so if it feels right. I wish you the very best!

  4. Rhonda says:

    Jaye, your story sounds a bit like mine. When I began to walk it was noticed that I walked oddly appeared “sunk in” in the back. After being seen it was determined my hips were dislocated. I was referred to Kosair Crippled Children’s Hospital in Louisville, Kentucky where I underwent six surgeries to include Salter Osteotomy of the hips (pelvic osteotomy). They basically had to make as well as reshape what I did not have regarding the “ball and socket.” I was in full cast from the waist down when I came home for almost one year. I developed Legg Perthes’ Disease in the left hip. I also had aseptic necrosis (which means the bone is dying). My right leg is longer than the left leg from shortening of the left femoral head, for which I wore a shoe lift for a time as a young girl (guess that was preparing me for orthopedic shoes one day)..sometimes I have to find some humor in the situation. I went back every year after the cast, sling, and crutches for a check up. As I review the records now at my approaching 50 years of age, I wish they would have done a bit more surgery before I turned 18 to maybe reshape the flattening of the femoral head but I am thankful to have been blessed by God to walk and do all normal activities as any other child, adolescent, and adult and to have only minimal pain here and there. However, on my last check up with the Children’s Hospital they note in my records “will most likely need hip replacement by age 50). Well as I said I will be that in a few weeks and it appears they knew a lot as I started in January of this year having pain in the left hip; it is now begun to pop occasionally and I can hear what I call “grinding of bones” when doing normal day to day activities such as lifting the right leg up to wash my foot while of course putting the weight on the left leg. Yet I can stock for a store for five hours and not hear a thing or feel any intense pain. There are many times when I lay in bed at night that it just aches and aches. I wonder how it would “really feel” if I didn’t take the pain meds I take on a daily basis..it’s hard to get going out of the bed in the mornings but once again once I get going I don’t let this hinder me.

    I saw an orthopedic doctor today and was told he would not do the hip replacement based on my current and past situation in that I basically don’t have the normal hips that others do and it would be extensive and intense. He would refer me to a surgeon who does only hip replacements. I asked all of my options and first we are going to try Meloxicam (Mobic) for three weeks and I will return with a progress report. He can do the injection through fluorescent lighting on an outpatient basis via the hospital…I will be awake but have two Valiums while he puts this 21 gauge needle six inches into my hip to the bone basically (not sure I have six inches to go through before he hits a bone or the bone). I want to put off the hip replacement or replacements for at least another 10 years as once the bone is gone it’s gone and as we know the older we get the bones deteriorate.

    The doctor explained it really well as to comparing it to tires on a car…we see the tread is getting lower so we take it in for rotation and/or tire balancing and at some point we have to replace the tires but we try to buy as much time as we can on the “old tread.” Well, it made more sense when he explained it. Would like to hear more from anyone who has had my problems.

  5. Rosalene Bradbury says:

    Thank you so much for writing this – it has helped me tremendously. I can absolutely relate to your symptoms – I have AHD (diagnosed forty years ago at the age of 22). Your point that arthritis as such, and AHD are different conditions is well made. I so relate too to “paying the next day not at the time for extending my limits”, and to “not been able to walk as far as others.” AHD is a limiting hidden condition which is too easily minamised by SOME family doctors who believe that unless arthritis is advanced the patient is attention getting. (Stories I could tell about rude treatment by GPs would amaze you, or perhaps not!) I was really beginning to think my problems were psychological. SO great to to have this website.
    Rosie in New Zealand

  6. Caroline says:

    My message is to all of you on here especially Jaye. I was born with hip dysphasia, and never knew of anyone else with this condition, I would like to email you directly, is this possible? There is lots I would like to talk about.

  7. Tamara says:

    I am two weeks away from my hip replacement and femoral osteotomy surgery. I too was diagnosised with hip dysplasiia on my 5 th birthday. Five surgeries later including a salter and femoral osteotomy, I was told do what ever you want because eventually you will have it replaced. I played volleyball and ran track in college, had 4 babies and worked out. Now at 42, I can’t tie my shoes, put on socks, ride roller coasters or walk 1/2 mile with out pain. My hamstring is deteriorating due to lack of range of Motion. (ROM). I had been told by many Doctors that they would not touch my hip. I found a doc through a friend who has done the surgery I need and is excited about it. Six weeks of non weight bearing then I start learning to walk again but by March I will be walking straight not crooked, painting my toenails, and riding a bike. It is hard to think that my life will be changed but reading your stories above give me great joy to know there are others like me. No more are strangers going to ask me why I am limping.

  8. Terry says:

    I just saw this conversation and would like to ask a question that maybe someone has experienced. Two months shy of turning 60 I was in a fair amount of left hip pain, which I had never experienced, and was told I have hip dysplasia. This was a complete surprise to me. Various strengthening exercises were recommended and I was told when the pain became greater I would know it was time for a hip replacement. The pain subsided and was only tender on occasion. One year later I have a fair amount of right hip discomfort. Has anyone else found out later in life they have dysplasia and if so, at what point did you seek surgery?

  9. Fran says:

    Terry, I was diagnosed at 47 and told things would deteriorate until I would need hip replacements. I am now 57 and over the last year have degenerated a lot – can’t walk any distance, tie shoe laces or cut and paint toe nails – and am now in constant pain. I had a steroid injection to enable me to have physio, but after 6 months of no improvement I am seeing a consultant tomorrow and hoping for a THR.

  10. Sharon Nakieski says:

    My name is Sharon. I am 61 yrs old. I have right hip dysplasia. Very little socket and no ball. My left hip has been replaced a little over a year ago. I am experiencing alot of pain in my right hip, now that the left has been replaced. I think it is because of the length discrepancy. It feels my leg with new hip is longer. Can’t get the right lift in left shoe just right. So really both hips hurt for different reasons. I am seeing a specialist who is a cancer Dr who can mold parts etc. I am scared to death. Even to talk of it. Just had cortisone shot in right hip for bursitis but now the inner part of hip hurting. So maybe shot in inner thigh? I have had staples on left knee to stunt growth of left leg so right could catch up to it. Witch I think it has pretty much. I can’t bend my right knee very much. Hardly at all. I have to go up one stare at a time almost all my life. Can’t imagine what the surgeon will say. Please let me know what you think

  11. JoAnne P says:

    Wow wow wow. This is so cool! Thank you all so much for writing. I just checked my email and saw all your messages! I didn’t think I’d get any responses. I mean I’m sorry we’re all in the same boat but happy to see I’m not alone. Your responses really helped. My email address is Jayentom@aol.com I’m running out right now I just wanted to say thank you to everyone for your input and I’ll be back to re read and answer your messages. Thank you all xo

  12. Jaye says:

    Hello! My daughter got married Sept. 21. It was the proudest moment other than the day my children were born. I didn’t enjoy myself. I was in pain. The wedding was in Disney World. The next my two younger daughters 22, 23 wanted to go to the Magic Kingdom with Mom, like old times. The pain from the day before and walking just to the gates was to much…but as usual I hid it and did what I had to do. Popping pain killers why I don’t know I was still in pain just didn’t care about it. When we came home and I watched video’s taken I looked horrible walking all off. I went to three doctors. I chose one. Because he looked at my xrays then saw me. He said wow it’s a funky hip but I can help you. I scheduled the surgery and had it done this past Wednesday. He told me in the morning it will take me around 1 to 2 hours. It’s usually more but your so thin. My husband after seeing the xrays treated me like I was broken. They looked a mess. When I woke up in recover the staff in the OR was there. And the doctor. The said it took us 3 hours. I’ve never seen anything like you. I thought to myself if she doesn’t get it now she’ll be back with in a year. When I saw it from inside I thought how did she last the past 5 or more years with out a new hip. Your flexibility shocks me. Let a lone how you were able to walk. The head was half the size it should be and so worn out it was shaped like an egg. Spurs all over the place. He was also able to put it in the position it’s always should have been in, and it gave me 1/4 of the 1/2 inch I was shorter. My pelvis should come back a bit as well on it’s own. I won’t be perfect but much better. I want to let you all know. I was scared shit! I actually feel better. Of curse it’s sore and stiff right now but when I look at it that lump in gone, and my tramp stamp is straight lol my back is no long giving me pain. It’s so weird not to feel pain. I’m down to half the painkillers I was on before the surgery. I’m home as of Saturday. Walking with my walker, showering sitting resting doing my pt from the hospital. Today I’ll find out if the PT is coming to me a few days or I”m going to them. I got this. I really got this. Don’t wait like I did. Do it. Really I may have lost fun at the wedding but I”m going to have a great time with my grandkids some day for sure!!! Find a doctor that your comfortable with. go for it. My window was two weeks from office visit to surgery or I could wait until the week of Christmas. Had I waited I might have backed out. Go for it. I’m going to be able to do so much more with my three daughters now again I can’t wait. Even the simplest thing like walking the mall. I’ll be there!!

  13. Jaye says:

    Thank you all so much for your stories. I am glad your all feeling better. I wish we lived close so we could spend a day trading stories over coffee and cheer each other on. Like AAA :) lol It’s so good to know I’m not the only one. I”m moving along I just hate depending on anyone that’s the hardest part of this recovery. Your stories inspire me. Keep them coming, please!!

  14. Jaye says:

    Rohonda. You should just like me. Exactly. I don’t know where you live, but get yourself to the nearest big city and research the doctors and what they specialize in who takes your insurance. Take all current doctor reports exrays and get a few opinions. If you have a copay then what harm is it? A lot of times as in my situation . The doctors saw me, physically not inside. I’m 48 work out so I”m in good shape. So right away I’m looking for pain pills or unneeded surgery. The doctor that worked on me said himself when I kept getting turned down to go to inpatient rehab. They’re looking at the chart and they see a 48 yr old 5’1 120 lb woman. The typical forms have older women that are very heavy it’s sad but it’s true you don’t fit the norm. Go kick down them doors Rohonda!! Where do you live?? I’m an our outside of NYC

  15. Suzette says:

    I can’t tell you how refreshing it is to hear each and every one of your stories!! I mean, I’m sorry to hear of everyone’s struggles with this, but I was starting to think there wasn’t anyone like me on the planet!

    I am 47 years old and my hip dysplasia was diagnosed when I was 2 years old. Like many of you, I was treated first with traction, followed by multiple surgeries/body casts, including Salter, and the same one Jaye describes with the bar on the outside right thigh (my right hip is also much more problematic than left). I also dislocated my left knee twice and ended up with reconstructive knee surgery. I do have issues with other joints as well (knees, shoulders, ankles, wrists), apparently due to my loose ligaments.

    My hips really didn’t become a problem again until my mid 20’s after giving birth (my two children were born 13 months apart). About half way through my 2nd pregnancy I could barely walk due to the intense pain. When my son was 6 months old, I had a Periacetabular Osteotomy (PAO). The idea was that to preserve the natural hip as long as possible to avoid multiple hip replacements over the years.

    The PAO was unbelievably intense, if you don’t know what happens here, they cut the acetabular from the pelvic bone, and reposition it with very long screws that stay in for about a year until the bone has grown together again. It was a 9 hour procedure. The overall recovery was much longer than anticipated, perhaps due to my activity level with 2 babies at home. I was on crutches for a full year and I spent the next 3 years walking with a cane. I exercised every day with endless PT, but I felt that I never quite recovered from that surgery. I developed low back pain due the the more pronounced gait after the PAO. I also developed RSD (now called CRPS) in my right foot, but thankfully my team of doctors at Boston Children’s Hospital aggressively treated and cured the RSD. This is not meant to discourage anyone from a PAO, and I’m not sure I regret it, it was just way more than I realized it would be.

    For the last 20 years I’ve been intentionally avoiding seeing any doctors about my hips. Trying to solve this problem was taking over my life. I made a conscious decision to stop trying to fix it, and instead did my best to accept it, manage my pain and focus on other things.

    However, in the last 2-3 years my condition has been getting progressively worse. The pain, instability and weakness has limited my mobility significantly. Recent x-rays indicate arthritis in both hips (bone on bone on right and less severe on left). What’s strange is that the intense pain I feel while walking is in my left hip, the right hip just feels incredibly weak (the right hip flexor is barely functioning). I do have bone spurs in the left hip as well. In addition I have developed arthritis in my low back, and just this year I started walking with a cane again to improve my gait and try to keep my back better aligned.

    Both my BCH doctor and my local doctor agree that bilateral hip replacement is inevitable, though it’s up to me to decide when I’m ready. This is a tough decision since I’m fearful of multiple hip replacements (on the same hip). I’m also afraid of complications like those I’ve experienced in the past (infection & nerve damage/RSD). Given the way my anatomy has been altered I’ve been told this is going to much more complicated than a typical hip replacement. I also realize that fixing my hips is not going to solve my other joint problems and I’d rather not spend the rest of my life becoming the bionic woman (as exciting as that may sound, unfortunately it’s science fiction!)

    People love to tell me about their aunt/cousin/brother/spouse who had a hip replacement and it was really ‘no big deal’ and they are fine now! I fully realize people mean well with these comments, but I’m pretty sure your aunt/cousin/brother/spouse doesn’t have my medical history. However the comments here about hip replacement — from people ‘like me’ — have me encouraged!

    I think I’m in the situation Liz describes about living my whole life with it and not even realizing that it could be different/better. I know I need to do something but I want to do what is best long term and it’s just really hard to sign yourself up for surgery, knowing full well what that entails.

    Has anyone here had PAO followed by hip replacement? Has anyone here had multiple hip replacements (on the same hip) and how has that worked out? I hope this conversation continues so we can hear updates on what people have tried and how they are doing!

    Thank you all so much for sharing your stories… and for reading mine:)
    Suzette

  16. Jaye says:

    Suzette I had the POA when I was 10 and the rod taken out a year later. I’m not sure that did anything really. I’m 3 months post op total hip replacement next week. My hip feels great. I thought the lower back pain was from the hip and the twisting of my pelvis.and would go away… Wrong my S-1 L-1 through L-5 is Degeneration but I’m waiting for the hip to heel fully before I even think about that. smh Your story is so similar to mine. I’m actually happy. Not for your pain but that I’m not the only one and someone get’s it. I do think you should have the hip replaced. As for the length discrepancy my doctor was able to give me 1/4 inch. It was 1/2 it does feel better, and my pelvis hits the floor on both sides now where before it wasn’t when I laid down. I can lay flat and not feel uncomfortable or in pain. I don’t know where you live, but please research all the doctors you can and go talk to a few of them. I live in NY an hour from NYC I grew up right outside of the city. I thought The Hospital for Special Surgery would be great. But I found a doctor right near me. He was so understanding and highly regarded I researched him and asked him a million questions. I have a huge tattoo over the scar from the POA. He used a plastic surgeons cuts on the hip replacement went throw the tat and you can’t see it. Three months it’s gone. If you’d like to chat don’t hesitate to email me. I feel like we’re Hip sisters!! :)

  17. Karen King says:

    Hi all. It is so refreshing to hear stories similar to mine.
    I was diagnosed at 6 months of age, went through the typical hip abduction with multiple diapers. Then the surgeon decided to just go into surgery and put the hip in the socket. 5 hours later he told my parents my acetabulum was flat and fibrous. So he did an osteotomy. It lasted until I was 20 years old when I had increasing pain and limited movement. They did a modified Chiari Osteotomy in 1984. I am now 53 years old and having increasing pain and limitations with walking etc. I take Naprosen daily to limit the pain. I do warm water aerobics trying to increase mobility and strength. I am to the point of looking into a THR but also have the concerns of all of the above responders. I work in the health field as a Radiation Therapist and am on my feet most of the work day. I too have been told by many orthopedists that they could not do my surgery due to the complexity of my history. I have finally been referred to someone at the University of Virginia who trained at the Mayo Clinic. I wish we could form a forum or something so we all could swap stories and encourage each other. Anxious to hear of your decision JoAnn

  18. Alison says:

    All of your stories have brought me to tears – I was born with DDH which was not diagnosed until I was two years old. At that time I underwent an osteotomy (possibly combined) to correct it. However, most of you speak of similar surgery but then have the pins and plate removed at a later date. I never did as they are still in place and I am now 45 and run half marathons and experience no pain except when it gets very cold! Am I just very lucky or had something done differently. Or are the problems you speak of just around the corner? It seems many f you have benefited from surgery in later life – best wishes to you all x

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