Kara’s Story

My name is Kara. I am 19 years old and was diagnosed with Hip Dysplasia when I was 17. I have always been a very active person. I played softball and basketball on school teams, and have danced since I was 4. During my high school years I was on the swim team and ran track.

During the Fall of my senior year of high school, I was sitting in AP Calculus class and leaned forward to pop my hips. Dancers pop their hips regularly because it enables them to have a wider range of flexibility. I always popped my hips and was fine, except this time I was completely stuck. If I leaned up to straighten back up, then I would be in excruciating pain. Well, I was the next person up to solve a problem on the whiteboard and when my teacher noticed I was stuck, she immediately went and got our first responder which happened to be my Allied Health Sciences II teacher. I had been in her class earlier that day and was completely normal, and now everything had changed. The longer I stayed there the looser my hip became and about an hour later (30 minutes after the bell had rang to dismiss school for the day) I was able to stand. If I put weight on that leg (my left one) it would completely crumble right out from under me, so they wheeled me in a computer chair to my car. I was able to drive because it was my left hip affected, not my right.

I was very determined to go to swim team practice that afternoon so I made myself walk laps around my house, and eventually I was able to walk with a small limp. My pain had almost completely subsided after swim practice and I was able to go about my normal routine. I was so confused about what just happened and why I was able to walk normally when hours earlier I was completely stuck. The pain was absent for the next month or so, and then came back. I went to my family doctor that I had been going to since I was a year old, and he referred me to my orthopedist who I had gone to for shoulder problems the year before. He diagnosed me with snapping hip syndrome and sent me to physical therapy. I was familiar with the PT process because I had gone for probably 8 months or so for my shoulder.

After a few months of therapy and no progress, he referred me to a surgeon about 30 minutes from my house who works at a local university hospital. I went to see him during the summer and had countless x-rays and an MRI-arthrogram which showed I had hip dysplasia and torn cartilage. He is known for hip arthroscopies, so he referred me to another surgeon who specializes in hip dysplasia.

I had my appointment with the doctor and he told me my options. I could have a PAO and hope the labral tear healed on its own, or I could have the hip arthroscopy to repair the labrum. The problem with the latter option is that with my joint so instable the labrum could easily tear again within a few months of the surgery. After praying about it and talking with my parents and sister who is a nurse, we decided it would be best to go ahead and have the PAO and hope the labrum would heal on its own. I was not sure what to do knowing that I was supposed to go to college in a couple months and knew that I could not have a major surgery and walk around a big campus. I also knew I could not wait until after college to have it because the longer I waited, the worse it would get. I decided to enroll at a local community college and take all online classes so I could do my work on my own time and rest when needed. We scheduled the surgery during the coming winter. Every day the wait got harder and harder being that it was mid-summer and my surgery wasn’t until well into the winter season.

When my surgery date came, we woke up at 5:00AM because we had to be at the hospital at 7:30 and surgery was supposed to start at 8:30. Things went as planned and after prayer with a friend who is a youth minister and my pastor, I was off to the operating room. I was in the OR for 8 hours and after I had recovered enough, I was taken up to my room. I was only supposed to be in the hospital for 3 days, but wound up staying for 9 days because of a post-operative ileus, which is basically when your bowels do not wake up from the anesthesia. My bowels were so backed up, I took one bite of spaghetti and threw it right back up because there was nowhere for it to go. It was disgusting! My surgeon restricted me from food and drink for 48 hours, and the only way I was able to stay hydrated was from IV fluids. Finally after 9 days I was allowed to go home! Recovery was not fun at all, and was pretty painful. One of the hardest things was not being allowed to bend more than 90 degrees. I couldn’t even put my own shoes on! PT was hard as well, but my therapist had a great sense of humor and I was able to get through each appointment more and more easily as time went by. Eventually, things were going smoothly and with much humor and prayer, my family and I survived the PAO process.

The following summer I was experiencing some more pain and my PT wasn’t quite sure what was happening. I had a cortisone shot because the first assumption was that I just had some extra inflammation that needed to calm down. After waiting for a bit to see if that worked, we realized that it was not going to do the trick. I noticed that I could feel the head of my screws just by touching my incision and I was grossed out. I went to see my orthopedic surgeon and he suggested that since my bone had healed he should go ahead and remove the screws, and that would hopefully help the pain. I went ahead and had surgery number two to remove the screws. Recovery from that was very easy and I was back on my feet in 2-3 weeks. Unfortunately, my pain did not go away completely. Later that summer I had more x-rays and an MRI and it showed nothing, but I knew there was something going on because my pain was terrible. I had an appointment with my orthopedic surgeon and general orthopedist together and they both agreed that I should proceed with a hip arthroscopy to explore what was going on and fix whatever was found. That Fall I had surgery 3. There were several things that my doctor found including a labral tear (even though it did not show up on the MRI), a bone cyst, a hole in my bone, synovitis, a bone spur that was poking through muscle, and impingement. Recovery for this surgery, despite the many things they found, was not near as bad as the PAO recovery. I was only on crutches for about five weeks after this surgery compared to well over two months after the PAO. There was obviously much pain involved, but still was not as bad as the PAO being that this surgery mostly dealt with tissue and things instead of the total reconstruction of my hip socket. I was able to go off to college that coming January because everything was looking good.

By late spring things were going very smoothly. My PT exercises were upgraded to jumping, running and other high-impact activities that I was restricted from for over two years. Unfortunately, by the time April came around a lot of my pain came back. My orthopedist thought it was tendonitis and bursitis, so he ordered intra-bursal cortisone shots, which are extremely painful shots that go straight into the joint capsule and bursa instead of just the muscle. After waiting a while again, it was obvious that they were not going to work and something else needed to be done. I had another MRI and a CT scan in later that summer because my orthopedist was not sure if the problem was dealing with bone or tissue. He ordered them stat because he knew I was leaving to go back to school for the Fall semester in two weeks. The CT scan showed a bone cyst and the MRI showed a spot that he thinks is either early osteoarthritis or where cartilage has rubbed down to bone.

He said if my pain was significant enough, then he could do another surgery to go in and take a look kind of like he did the past Fall. I decided that another surgery, though not an appealing option, would be best given the amount of pain I am in daily.

My journey with hip dysplasia is not over like I had hoped it would be by now, but the Lord continuously provides for me and is revealing Himself to me in ways that I never thought possible. During this process, He has constantly reminded me that He is sovereign and I am not. He knows what He is doing and this will work out for my good and His glory. For example, before all of this I had decided I wanted to be a physical therapist, and I do believe He is giving me every opportunity to experience how my patients are going to feel, so that I can have an extra amount of compassion for them. To all of you reading this who have hip dysplasia, please do not be discouraged! With Christ, we always have the victory!




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  1. Carolyn says:

    Kara,

    Thank you for your story. Mine is almost identical and freaky! I was born with hip dysplasia. I was finally diagnosed when I was 17 after many years of trying to convince my parents that I had a problem. I decided against the surgery because the doctor could not promise my pain would be relieved. I am now 26 and experiencing more pain than ever. The pain doesn’t ever go away. I used to dream of finishing an Ironman but I’m starting to lose hope. I cannot sleep at night because the pain is so bad and I cry every volleyball match I play and I is mostly from anger. I started to be angry with God. Its not fair that I am 26 and cannot do the things a 26 year old can do. Reading your words about counting on Him to get me through truly spoke to my heart this morning. It’s so difficult to not feel sorry for yourself. I am going to try harder to seek God through this. And look forward to that day when they replace my hip and my pain subsides. Thank you! And I’ll be thinking about you as you journey through this as well.

  2. Alicia says:

    Thank you for posting this story. I often look for info and personal stories about others with hip dysplasia and who’ve had PAO surgeries. My story differs from yours. I was diagnosed with HD when I was an infant. Even though mine was found early, it was not soon enough to correct it. (Baby bones are soft enough to be molded into the proper shape if HD is found early enough). My parents did not want their baby to undergo surgeries, so I had a brace on my pelvis and legs (I have HD is both hips) until I was about two years old.

    I had hip pains during my entire youth. I was excused from a lot of gym activities in school. The pains were much worse if I was having a growth spurt. Tylenol would take the edge off the pain, but it was a daily occurrence. The problem became worse when I was a teenager and began working at my first serious job. It was only on weekends, but I would limp to all my classes during the week until Friday, only to injure myself again on Saturday. My mother brought me to an orthopedist who told me to wait, I’m too young for hip replacements, and to take it easy. A PAO lasts approximately 10 years, a hip replacement can last up to a maximum of 14 years, and one person can only get up to two replacements in a lifetime… I was devastated. I was 17 with very damaged hip sockets and the balls on my femoral heads were very irregularly shaped. If I acted then, 38 years later (I’d be in my 50’s) I’d have no options and in a lot of pain… possibly wheelchair-bound.

    In the mean time, i managed my pain with chiropractic care and Tylenol and exercise. I found my right leg was shorter than my left and was throwing off my gait and the alignment of my spine. I used a lift in the heel of my shoe to even myself out.

    I waited until I was 25 to have my PAO surgery. The surgeon I found was highly regarded (I had to travel an hour to see him in Boston). He assured me PAO was the way to go and I might be able to keep away from hip replacements for a long time if we were able to preserve my joints now.

    I had both hips done, one after the other. I was on crutches for about 6 months in total. I’m not sure which surgery was tougher on me. My right hip was done first since it was the worst and in case I decided not to do the left one. Immediately after the first, I said there was no way I’d do it again, but I changed my mind. This was in 2009. My recovery was steady. My first PAO was March 31, 2009 and the second was July 7, 2009. After the first, I developed an infection from the type of stitches used on the internal incision. I’m glad I had the surgeries. I felt better (after my recovery period was over) than I had in years. My doctor decided to leave my screws in and I’ve had no issues with that.

    Now I’m 28. I just had my first child. I delivered him via C-section so we didn’t damage my hips during delivery. My range of motion is really good, but my OB was concerned about her pushing my joints too far and I wouldn’t feel it if I had an epidural. I had him checked for HD when he was 4 weeks old. The X-rays came back negative. I was so happy, I cried a little. HD is hereditary, but it is less common in males.

    I was having some back pain from carrying my baby and his car seat around so I went to see my chiropractor. She found that my pelvis is slightly twisted and my right leg is still significantly shorter than my left. I’ve started treatment to correct this issue and now my hip feels sore like it used to before my PAO. That’s how I found this message board, looking for post-PAO stories to maybe compare mine to. To see how long other’s relief lasted before they sought further treatments. I’m hoping my current ailment is just a torn labrum or some tissue-issue from pushing myself too hard and carrying such a heavy baby.

    Please, feel free to share your story as it changes. There is not enough info out there for post-PAO HD sufferers like us.

  3. Amanda says:

    Thank you for sharing your story. I was diagnosed with hip dysplasia since I was one year old. I had never had any problems until now that I am 26 years old. I never really understood what I had but decided to start researching after much discomfort and pain on my left hip. I hope to find some answers and a good doctor that can help me.

  4. Julie Mendenhall says:

    Thank you all for your stories. My 14 year old daughter was just diagnoised with Hip dysplasia and was told to have a PAO. We are trying to decide if that is a good idea at this early age. I am worried that the surgery might cause her more issues than she is currently facing. It is very hard to decide!
    worried mom!

  5. Ava says:

    Hi,

    It’s so great to hear all of your stories! Sometimes I felt that I was the only person with teenage-adult hip dysplasia. I am currently 26 years old and first noticed symptoms when I was in my 3rd year nursing school. I would get a sharp intermittent sort of electric shock pain own the lateral aspect of my left thigh. I thought it was some sort of sciatica pain at first until I decided to get x-rays done. They actually found bilateral hip dysplasia. Today I still don’t have any symptoms with my right hip but am told that with time it will eventually be troublesome! :( I went to see a orthopedic surgeon in 2008. I inquired about the PAO surgery to which he told me that I candidate for. He told me to wait out the pain until I wasn’t able to handle it anymore then we would have to look at total hip replacement. I have no arthritis in either hip. I’m thinking of getting a second opinion to possibly get a PAO in the future. There are only 2 doctors in Canada that perform such a surgery so it would involve a long trip for me!

    @ Julie: I think that a PAO surgery would be your daughters best option. I am a RN & one of the doctors at the hospital was telling me that the procedure is most effective if caught at an early age! Also it’s best to have the least amount of arthritic imvolvement of the hips as possible to make for a sucessful surgery. AFter PAO surgery ….with reasonable recovery time you are able to resume the majority if not all activities that you were able to perform before DHD. Also it extends the life of the hip … to prevent having a total hip replacement at an early age! Hope everything works out for you :)

    Does anybody have any surgeons that they could suggest for a PAO?

  6. Julie Mendenhall says:

    Thank you for your input! We are trying to become educated and gain a peace about having this surgery. Since Whitney stopped volleyball she is not in pain on a daily basis. It is hard to know if the surgery might change her daily quality of life in a different way. New issues relating to the parts that have been placed in her body? We have heard that there are two surgeons on the West coast. Dr Keith Mayo in Tacoma and One in San Diego.
    We hope your search goes well. Keep us posted!
    Julie

  7. Sophia says:

    Hi, I was born with hip dysplacia but not diagnosed until 1 year ago when I was 14. Now I am looking to get surgery but I didn’t completely understand the results. I don’t know if I should wait or not because it seems like the longer you wait the more you regret waiting. But it sound so scary and I am only a sophomore so theres time right?

  8. Julie Mendenhall says:

    Hi Sophia,
    Wow, you and Whitney are in the same boat. She is 14 and a freshman and we are just trying to decide all of this also. Looking at maybe doing the surgery this summer! Are you in pain often or just when you are active? What State do you live in? This is a big decision to make and I know what you mean about scary! It is hard to know what the future holds. Shelby’s story is an inspiration to us!
    Julie

  9. Alyssa says:

    Hi! I was just told I have Hip Dysplasia also! I’m 14 right now…I’m super scared about what’s in store, we go talk to a doctor next Tuesday. They thought they fixed it when I wore a harness as a baby, but turns out they didn’t. I didn’t know I had it until we went for x-rays on my leg where I injured it and the doctor noticed my hips on the x-rays. I’m so scared! I play softball and basketball and I don’t want to have to have surgery and not play High School sports! How have all of your experiences been?

  10. Julie Mendenhall says:

    Hi Alyssa,
    We are on the same journey as you right now. Whitney is also 14. They are wanting to do a PAO surgery on her hip in August. Are you in a lot of pain with your hip? Whitney tore her labrum in volleyball as it has hurt since then, that is how we discovered she has hip dysplasia. Keep us updated on how your appointment went. We are still trying to figure all this stuff out also!
    julie

  11. Alyssa says:

    Thanks for responding back! Yes, I am in pain. It’s kind of weird though…one day my hips will be so sore and the next day they don’t hurt at all! And sitting certain ways is painful also. Like during science we sit on stools, and I’m unable to sit on them because its so uncomfortable for my hips! It’s so strange…Is Whitney’s pain always there or does it come and go??

  12. Julie Mendenhall says:

    Hi Alyssa,
    I will have to let her get on and talk with you, but yours sounds just like hers! Hers comes and goes and the stool is also painful for her. It is always hard to know what will make her hurt and when. Sometimes we will just be walking around the mall and it hurts her. Are you still playing sports, she has stopped volleyball, but she misses it so much!

  13. Alyssa says:

    That’s exactly how mine is, It’ll start hurting at random times!! I still play softball and basketball even though it hurts, but sometimes it gets really bad and ill just sit out during P.E. I’m just glad I’m not the only person going through with this! I go on Tuesday to talk to the doctor again and figure surgery out.&does she stand sort of funny? Because when I stand my feet turn in kind of, I think its called pigeon footed? And my hips will like become weak and I’ll trip easily.

  14. Julie Mendenhall says:

    Hey Alyssa my name is Whitney. I think you have already talked to my mom! I’m 14 and I love volleyball. I have played since 4th grade. Recently ive had a ton of hip pain! Then I found out I have hip dysplasia, I quit playing volleyball to try to reduce some of my pain. It seemed to really help, but I want to be able to play sports. So im scheduled for surgery in August. On a daily basis im generally not in much pain. Some days are worse than others depending on my activity level. Like running and sports are major struggles because of my pain level. Sometimes I find stairs difficult. Also I get really sore if I sit for too long. My hips tend to pop a lot. Sometimes its really painful. Usually my pain isn’t awful or unbearable though. So I guess the answer to your question is yeah my pain comes and goes. It was Nice talking to someone who is experiencing the same thing I am. Keep me posted on how you are doing:)
    -Whitney

  15. Alyssa says:

    That’s exactly how I am! My hips pop and it can be painful sometimes! And when I stand or sit to long it becomes painful. At school I can’t sit on the stool in science because it’s so painful. Running a lot, for example a 5k, causes me a lot of pain! Looks like were kind of in the same boat. I’m so glad I can talk to someone who’s going through the same thing as me! I just have a quick question for you…Do you ever walk/stand weird? I do sometimes..

  16. Julie Mendenhall says:

    Exactly!! and as for standing and walking I don’t think so. Ive never been told I walk differently but when I run my legs kick out and my knees turn in… I don’t know if that makes any sense ha but I have always been told I run funny. I also sit funny. I cant sit with my legs crossed like Indian style. I sit in a ‘W’ shape. but ive always sat like that. Doctors tell me its because I have a lot of external rotation in my hips. it makes me super flexible but I hardly have any internal rotation. Anyways what about you?
    -Whitney

  17. Alyssa says:

    Whenever I stand I’ll turn my feet either in or out and I’m told I run funny also! And Oh my gosh that’s a huge reliever…I thought I was the only person who couldn’t sit Indian style! I sit W style also and everyone thinks I’m crazy! Everyone in my grade will try to sit like that and say its uncomfortable! But nope for me it’s normal, unlike Indian style which is sooo uncomfortable and just feels plain weird and painful! Thank goodness I’m not the only person!

  18. Julie Mendenhall says:

    haha that made me laugh! same story here! ha none of my friends can sit like I do. Indian style is soooo uncomfortable! whoo finally someone else besides me who can’t sit Indian style !!!

  19. Alyssa says:

    THANK GOODNESS! I was starting to think I was some kind of abnormal freak…haha but seriously is there anything else weird that happens to you??

  20. Julie Mendenhall says:

    haha nope no worries;) and hmm lemme think…sometimes when I do certain stretches like burpies, mountain climbers or scissor kicks i get like a grinding feeling in my hip… its difficult to explain but when ever i extend my leg it feel like something is grinding against something. its super painful and uncomfortable. but really other than that i cant really think of anything else. what about you??

  21. Alyssa says:

    I know what your talking about..it is hard to explain. I get that grinding feeling also.. 1 last question, what do you do whenever your hips start hurt at school? From like sitting so long in the desk or walking down the hallways??

  22. Julie Mendenhall says:

    really?!?! gee thought no one would ever understand what it was! And I usually just stand during class and take some Advil. nothing really helps but just a change in position really helps sometimes. standing feels more comfortable to me most of the time. it really all depends on how much pain i’m in. Hey I have a question for you also. What Doctor are u seeing on Tuesday. are they a hip specialist?

  23. Alyssa says:

    I’m not sure…I live in Illinois. I’m pretty sure it is a hip specialist in St. Louis but i’m not sure..My mom knows all the info

  24. Teresa Bayler says:

    I am writing in regards to my daughter-Shelby, she is 17 and very athletic. She plays volleyball and softball. She was diagnosed early last fall of Hip Dysplasia she is scheduled for surgery later this month. She will be a senior this fall and is adament that she will be ready for softball next spring. She will miss her senior year of volleyball, but she plans on still being a part of the team. She is beginning to realize just how close the surgery is and what she is going to miss out on this summer and fall. She is in pain all of the time. Sometimes worse than others. She sleeps on a heating pad most every night and uses ice on her hip alot. Riding in a vehicle for long periods of time is very painful, sitting and standing also painful. Movement sometimes helps but not always. She doesn’t let her pain stop her from doing things, but she does use alot of ibuprofen and tylenol. Her pain scale is always at least a 3 as a constant and will be as high as a 6 or 7 at its worse. She is never completely without pain. If anyone has any encouragement for her it would be appreciated greatly.

  25. Cassie & Jennifer says:

    Hi ladies, Thank you all for sharing your stories. We left Dr Herreo-Soto’s office in Orlando Fl today with a recommendation to check out this site. My daughter Cassie is 13. The doctor is recommending the PAO this summer. We were both thankful to hear stories of other young ladies going through the same thing. Is anyone aware of any other sites where the girls blog about this. We would love to hear some great recovery stories for our peace of mind :) BTW: Cassie runs funny too (feet out), when standing with her feet together, her knees point in touching each other. Both her and I(when I was little) sit in a W.***MOM’s: If any of you want to keep in touch, private message me on facebook and I will send you my number- Jennifer Coley Palm Bay Florida

  26. Julie Mendenhall says:

    Good idea! If anyone wants to talk to me private message me on facebook
    Julie Maier Mendenhall, Albany Oregon

  27. Gretchen says:

    I kept thinking that my 17 yo daughter has femoral anteversion
    But after reading these and seeing her complain about
    Hip popping and the pain associated with it I am beginning to
    Think its hip dysplasia! She sets in a W, walks the same way as above,
    and recently started popping in her hip. This is something
    Several cousins have had fixed and her grandfather recently
    Had his hip replaced. We go Friday to the Shriners hospital in
    St. Louis so I am glad I found this before we go to be a little more
    educated just in case.

  28. Julie Mendenhall says:

    Keep us posted! Yes popping is a big problem for Whitney. I hear the pop then she says owww! Happens many times a day

  29. Alyssa says:

    Does anyone know another good website to get good information on this?
    I had hip dysplasia as a baby and wore a harness to fix it.But when we went to the hospital awhile back to review the x-rays of the bump on my thigh(it was benign Osteocodroma) the doctor told me I have hip dysplasia in my left hip again. We have to go in for X-rays and stuff sometime within the next year to see if I have it in my other hip and how it should be handled.
    If know I typed a lot but I’m 14 and constantly have a dull ache in both hips and hear a popping noise.
    Just looking for some advice or other websites I can find info on this and how I can ease the pain.

  30. Sofia Garsed says:

    HI everyone,
    I am in a similar boat as was diagnosed with HD about 3 years ago (I’m 29 now) and until now have been managing the pain with minimal walking.
    I used to be a trekking guide, and be very active and one day out running my hip made a cracking noise and since then have been in pain! Took a couple of years to get the diagnosis of Hip Dysplasia though as the doctors that I went to thought that it was internal pain, or an issue with my groin.
    I cannot walk for very long, and have not been able to run or do any high impact sports for 3 years. I now have a date for a POA at the end of September, and searching for anyone that has been through it, for more information on what to expect as there is so little information around!
    I’m based in the UK and I would really appreciate if anyone has been through the procedure to get in touch, I can be found on facebook as Fi Garsed.

  31. Keri's story says:

    I was diagnosed with congential dislocated hips or DH when I was 15 . I was running track a majorette a freshman in high School. Went to orthopedic doctors in 3 states and they all recommends hat is now called POA. I had the surgery that summer before sophomore year. I am 47 years married and 1 child . They have changed post surgery drastically. Which is a good thing . I was in a body cast 3 months and had to learn to walk again! I was a majorette junior and senior year of high school , learned to ice skate, ski and painless until about age 3o. 2 years after giving birth to my son I started having pain in both hips. I take anti inflammatory medicines Celebrex for 10 years then switch to Mobilc I have arthritis in both hips. I still wonder to this day if I made the right decision to have surgery at 15 but if I would not have I might not have been able to walk . I am a dental hygienist . Of 22 years married have a 19 year old son that was a c-section , I probably will have to have hip replacement eventually. I still hike and do what I want I just hurt the next day. I think surgery and post treatment is so much better than 30 years ago .

  32. Karen says:

    Hi everyone- my daughter, Molly, is scheduled to have a PAO in Dallas in November. She is 16 and has Down Syndrome. I am really scared – so worried that something could go wrong or that it might not work. And the thought of putting her through this when she won’t understand is very frightening. I’m also nervous about the recovery.
    Any words of wisdom are welcome
    Would love to have peace of mind that we’ve made the right decision.
    Thanks.

  33. Gary says:

    Hi everyone- scheduled to have my second PAO surgery this Monday (Oct 7). Had the first done about 20 years ago and the pain from surgery was horrific. Don’t mean to scare off anyone, but after recovery, the hip is holding up fine 20 years later and now I have very little pain. Doing the other hip on Monday and am hoping the process is a little better than 20 years ago….wish me luck!

  34. Chris says:

    Hi Karen,

    Our son JJ also has down syndrome and needs this surgery. We have the same concerns that you have. We live in Minnesota. We are taking him to Boston Children’s Hospital this week to see Dr Kim. We would like to connect with you to compare notes.

    Thanks,

    Chris & Leslie

  35. Karen says:

    Hi Chris,
    It was nice to hear from someone who is going through the same thing. When is JJ’s surgery? I have talked to Dr. Millis in Boston and he advised us to move forward with the surgery with Dr. Sucato in Dallas. But I would love to talk to someone in our same situation that has already gone through it so I can prepare our daughter as best as possible and so I can be prepared as well. Having Down syndrome does make the process different. As you must know, our daughter means the world to us and seeing her frightened breaks my heart.
    Any advice or info will be greatly appreciated.
    Thanks,
    Karen

  36. Erin says:

    My daughter is 9 and is having issues with her hip. I’m looking to take her to a pediatric orthopedic dr. I took her last year because her left foot actually looks as if it has no arch, like a flat foot, but her right one is straight. When she runs she also kicks out on one side, and people say she runs funny. They sent us to PT and we started working on her arch. Noticing when she aligns her foot her whole leg is aligned, her knees don’t touch. One day she was doing “frog” exercises & we noticed her behind is lopsided. One side has more muscle than the other, the therapist mentioned it may start from her hip. We ended up having to stop the pt when school & sports started, plus she said her foot was doig better. Lately, my daughter has been complaining of hip pain & I started reading up on this. Is it possible to have dysplasia in one hip?
    Your stories are helpful & inspiring!

  37. Kim says:

    Karen,
    My son, 17 yrs old, is having PAO in Dallas next week. Dr. Sucato is our doctor. Has your daughter already had her surgery? I would be happy to talk to you. I’m not sure how this site works so hopefully you will see my post.

  38. kerry says:

    Erin I was touched to read your story,I am in my late forties. I grew up with a limp which was never diagnosef until now. As a child I could bever run. It turns out to be a dislocated hip needing a total hip replacement.I urge all parents to get their children checked out if they are having problems with walking. If you are not happy with the dagnosis then seek another opinion.

  39. jamie says:

    Thank you so much for posting your site and your story. I never have really dance much in my life, never have done sports. Til I graduated high school. I went stright into the military. That was the best time in my life. I was fit lean and ;3 mean fighting machine. Til one day we were doing a team building activity. And we were climing over a 15ft wall with nothing but us 4 and half a yard of rope. Well we desided I go down first to be the spotter. Sadly I sliped out of my buddies hand and fell. Didn’t hurt or anything at the moment. So we went on our routine. Next day started to notice that left side would go numb during exercising and my lower back there was sharp pain. Didn’t want to say anything, didn’t want to be found out ether. But days went by and it got worse. Til I was move to another company, and that’s when the popping got extremely painful. I got noticed and was ship to the medical bay. They said I had fractured my s1 vertebrae. I asked about my hip they just put it off as i just torn the muscle. Well after awhile, they said if I was not to heal I would ether have to go back or be shipped home. Being in the medical bay I saw too many go back before they healed. And can not walk now. So I was sent home, went through va and they told me to have surgary on the back and then maybe the hip if it continued. Well I told them at first no. Then when I was bout to go ahead and go through with it they cut my disability off saying I didn’t have enough paper trail, and then a doctor in Dallas in his statements said “I was making up the pain in my leg.” He no longer works for the va hospital from my knowledge. I had thought for the longest time I was the only one. My back is always killing me and my hip pops in and out all the time. It’s extremely painful, that most people I describe the pain to just looks at me. I honestly am scared of going under the knife. The 50 50% chance it will get better or worse. I’ve been just dealing with the pain for 5 years now. But its getting harder to even walk correctly. Being 23 it worries me. You are very inspirational.

  40. Chris & Leslie says:

    Hi Karen,
    We are just now seeing your email from October. We are in Boston now, and our 17 year old son, JJ had his PAO done on Tuesday by Dr. Kim.
    I hope you and your daughter are doing well. We are hoping to go back home to Minnesota on Wednesday.

    Take care,

    Chris

  41. Laura says:

    Hi, I’m 22 and I was born with Hip Dysplasia. Luckily, I had my first operation when I was just 16 months old in Southampton, England and the surgery was spot on! However, the surgeon said when I hit my early 20’s, I would need another hip operation, either a bone graft or complete replacement. My who,e life I have played football, Tennis, Badminton, Squash, I was in the Jersey Swimming team and played Netball. I had to quit EVERYTHING because I was in constant pain. My mum didnt think it was that bad, even though she knew what the surgeon had told her after my first op. we went for an x-ray about a year ago and sure enough, advanced osteoarthritis had taken over. I can just about walk. I am waiting for my full hip replacement this year. The doctor said I probably won’t play sports again, apart from swimming and cycling. Parents, please, please listen to your children when you know they have a problem. My mum was driving me home after the explanation from the doctor and was crying, telling me how sorry she was that she thought I was over exaggerating. It’s not any bodies fault, but if she had listened to me earlier, they may have been able to do something sooner. I live in Jersey, Channel Islands and its hard to get a job at the moment. Luckily, my manager has said that they will get a replacement for when I’m gone, but when I’m healed, I’ll be straight back there. Some parents may think their child is over reacting, but get it checked out if they are in constant pain. I’m on medication at the moment and it is doing NOTHING to help me. It doesn’t even take the pain away. I’m 22 and I don’t have a life anymore. I can’t hardly walk up the stairs without collapsing. Get checked as soon as you feel pain. Many thanks,

    Laura

  42. Donna says:

    Hi,
    I was born with hip dysplasia in my right hip, which wasnt picked up until i started walking at 14 months old. I had surgery at 16 months old and had the metal work taken out 12 months later. Growing up i took part in most sports activities at school, but i have a huge scar down the side of my right leg which i was always concious about which made me hate wearing shorts. My pain started at the age of 17 when i was carrying my first child. I thought that it was the weight of the pregnancy that was causing the pain. I went on to have another child at the age of 19 and by this point the pain was unbearable. After i had my baby i went to see a doctor and was sent for an x-ray. The x-ray showed that my hip joint had worn on the inside of the socket and the roof of the hip was shallow. I suffered for another 2 years in excuciating pain, taking a cocktail of pain killers and anti-inflamatory tablets and using a walking stick. This was one of the lowest points in my life. I had 2 young children and struggled on a daily basis with simple chores and activities. Eventually my consultant decided that a PAO would be the best option and would hopefully give me between 10-20 years before i would need a total hip replacement. I had the surgery in 2000 when i was 21 years old. The surgery took 6 hours and i was in hospital for 10 days. I dont remember much of the first couple of days as they gave me morphine for the pain and i was completely out of it. I was told by my consultant that i would take between 12-18 months to fully recover from the surgery. However my recovery was alot quicker than expected. The first 3 months i was on crutches and could not bare any weight on my hip. After that i gradually started to put weight on my hip and went down to one crutch. Within 9 months i was fully recovered and totally pain free. The PAO surgery was a success for me and it has given me 12 years without any pain. I am now 35 and i started with pain again around 2 years ago. It has got gradually worse and i have also started getting pain in my knee on the same leg. I have been back to see a consultant a few weeks ago. He sent me for an arthrogram on my hip which was not a pleasant experience but i got a steriod injection at the same time to help my pain. The injection worked well for a few days and has taken the edge off the pain in my hip but it has not completey gone. I have also started wearing a raise in my shoe as my leg is 1cm shorter than the other. I am now having a lot of pain and burning sensation in my knee and i am waiting for an appointment for a scan. I think the years of limping has affected my knee, i’m hoping that there will be no serious damage. Has anyone else had problems with there knee as well as their hip?

  43. Catherine says:

    I am 17 and was diagnosed with hip dysplasia when i was born. I was put into a brace to fix the dysplasia from 0-3 months old. I thought all was fixed! I run XC and track and have run a few half marathons and been to nationals for steeplchase so i thought my hip was fine! Until when i was 15, I was having hip pain and had an arthroscopy(May 2013) to see what it was. Turned out I had a torn labrum and my cartliage had stretched so they shrunk it back to size. However the surgen at that time still insisted my pain had nothing to do with my dysplasia as a baby. The surgery(and the forced time off from running from surgery) helped and i was pain free again for another year. In may 2014 my hip started hurting again, i was diagnosed with bursitis and dysplaisa (again..). I saw another surgeon the other day (August 2014) and since i am such an avid runner he said I have 2 options either change sports so I don’t have to do distance running or get a PAO. Apparently if I dont choose one of these options I will get osteoarthritis by the time i’m 20-30! But my hip pain isn’t that bad, I don’t run strangely, it just has recently started hurting when i increase the amount i run! Anyone have any advice?

  44. Christen Thomas says:

    I am so glad I found this page! I just found out I have hip dysplasia and my orthopedic doc is suggesting PAO. I have been in terrible pain for over a year now a do just can’t take it anymore. It never really bothered me until a year ago when it all of the sudden got really painful. I am 36 and have had 4 natural births and thankfully am done now so I won’t have to worry about that after the surgery. I just started taking college classes to become a nurse but I think I am going to have to have the surgery sooner than layer so nursing school will have to wait. I am not looking forward to the long recovery but I am more hopeful now that I know a little more from your stories. I live in Norman, OK and I’m not sure where I am going to have to go for the surgery yet. Thank you for letting me share and I appreciate hearing all of your stories! I’m sure I will be looking here more for support as I go through this journey.

  45. Sheryl K. says:

    Wow I am in awe of this site after reading all the posts from the young gals (as mostly been gals I seen). I am so glad I found this site. We were told Sep 12, 2013 that our now 16 yr old (was 15) has hip dysplasia more in the right than the left. We were seeing an orthopedic specialist for about a yr or so as she supposedly pulled a hamstring left leg in Ph Ed in May 2012 (was diagnosed by regular family dr) but ended up seeing specialist & he put her in brace & crutches & PT it did get better but then it acted up again so back in brace & crutches. Well by Sep 2013 she was on crutches & braces mainly for over 6 months so when it improved again this time she needed very strict PT so went to Mayo Clinic & they “seen” she had to be taught to walk again–which sounded weird I know–but after spending an hour with PT she was out of her brace (even had dr throw it away) and she was given 2 weeks to wean off crutches but we left there with NO crutches. Well to go back a bit before we went to PT at Mayo–the orthopedic specialist sent us to Mayo ortho as he was “lost” to what was causing her knee pain for such a long time but first he took xrays of her hips & when they came back he asked if she was breech & I said no why? He said she has hip dysplasia right being worse then left so he sent us to Mayo Clinic ortho specialist & she told us what it was & what it meant for our daughter—arthritis for sure at much younger age than if not had it–IF she was diagnosed BEFORE 5 yrs old they could have done a surgery but cause she wasn’t now she said we would wait til she started getting hip pain before we would think of a different type of surgery they can do on older children like her—she explained surgery. Than after that apt was when we went to the PT for the hour “training”. Well just recently found out our daughter has been having pain in her hip as it had got so bad that she missed school yesterday & that is when she told us she had been having pain on & off but didn’t tell us as she does not want to go thru the surgery at such a young age. I told her it will only get worse & she can get arthritis in her hips (which Dr told us) & from my experience & her gramps told her she don’t want that. I found this site & been reading all day the different stories & the ones in the posts of the ones whom posted. I asked her to read some but she didn’t want to. But I know she experiences a lot of the pain many of the girls have also. The only difference in her and most of these is that she is not active in sports all she has to do with sports is in P.E.. I notice she can not stand/walk for long either without pain or even sit long either. Mainly the walking/standing pain from before we found out hip dysplasia she always said it was from her knees but I am wondering if it could “feel” like it is from her kneed but really in her hip? I know & understand more form her Dr at Mayo Clinic what could be in store for her future (and now from reading these posts esp from ones whom didn’t have the surgery at young age & how they were at older age)but she don’t realize what her future could be like (she has learning disability). How many of the teen girls went thru the surgery & what is their outcome form surgery & how long ago did they have it & one’s whom knew n was told as teen to have surgery but didn’t what happened to you (more pain/arthritis young/not enjoying life as in pain)? We do not want to put our daughter thru surgery at young age if it is NOT going to help/if she going to be in pain say in a yr or so later/get arthritis young age & IF she WILL have to have another surgery on hip in a yr or shortly after 1st? I know she will have to have it also on her left hip but right now her right is the worst. what does moderate hip dysplasia mean compared to mild? We live in MN. How many years “relief of pain” would she get if have surgery at 16 compared to waiting til hopefully like 30 or so? Please email me at s_kuether@hotmail.com your comments on either positive or negative about surgery as doubt if I will be able to find this site again—as it was “just happened upon”.

  46. Heather says:

    My 17 year old daughter had PAO’s on each hip – one in 2010 and the other in 2011. The left which had the PAO in 2011 had the cartilage all crumble and fall off the femur. She is not in a great deal of pain daily due to the lack of femoral cartilage on that side. She is also experiencing a lot of pain on the right from favoring it (and the right is the more deformed femur of the two to begin with). We are talking to doctors currently to explore options for her. It seems to come down to Hip Replacement (which would fix her, but all the docs are reluctant to do it), an allograft (which seems experimental for the hip from what I have heard), or fusing her hip. Does anyone have any exposure or experience with any of these options? I understand trying to preserve her natural hip, as she is only 17, but she cannot walk very far without crutches right now, and the other two options seem to have more issues associated with them. The PAO’s worked for what they were supposed to do – her issue is that her femur bones were both severly deformed as well. Any advice / feedback would be greatly appreciated.

  47. Sara says:

    I’m so glad I found this page I’ve been looking to see if anyone else hD the same problem as me… I was diagnosed with hip dysplasia on my right leg when I was around 6-8 years old my parent never made a choice on getting me surgery cuz the doctors didn’t have good possible outcomes now I’m 24 and lately I’ve been experiencing the worst pain ever it’s been on going for 2 days I can barely walk it hit me out of no where ! This really sucks I’ve also always been over weight so that’s another problem I’ve always struggled over my whole life and that doesn’t help!! Idk what to do sometimes I just want to give up in life … Like why me???

  48. IHDI says:

    As a physician, it’s very common for patients to wonder, “Why me?”. Who wouldn’t when they are diagnosed with diabetes, cancer, kidney disease or any of those diseases that seem to come out of nowhere. Parents are often overwhelmed when their child has a disability like hip dysplasia because life is often unfair. Philosophers have been trying for ages to give meaningful answers to help people cope with life’s difficulties that seem random and undeserved. We don’t have any answers to those questions at IHDI, but please don’t give up. Help is available for most people with hip dysplasia. Although Obamacare has been criticized, it does give more options for people who are uninsured and new government health programs are more and more available. Check with your local health department if you need some information about funding for healthcare. Also, there are doctors who can help with obesity and with hip dysplasia even though it may be difficult to find the right doctor. Major medical centers are a good place to start if you don’t have a primary care physician who can make recommendations. So, please don’t give up and keep looking for options because hip dysplasia is often treatable.

  49. Dan says:

    I just read the whole threads. My daughter is 2.5 years old now, she was born as breech baby with C-section. Both of her hips have always a slightly bigger angle degree then normal. But compared with last year, the hip angle keep steady on 29 degrees, which normal is less than 25 degrees. She is walking, running fine, she can sit as Indian style and do any types on leg. The doctor said she is too good to do the operation and we just need to wait and see in another years time.

    By reading all your stories, it makes me so hard to make the decision. To do the operation, she seems fine at the moment, and no one can 100% sure she will be fixed after operation, and don’t even mention the post-operation recovery. But if I choose not to do the operation, it may damage the hip permanently in the long run.

    What should I do?…..Any suggestions from you guys?

  50. Carrie says:

    Donna, I am 40 and am also having a significant amount of pain in my hip and knees. I have recently been diagnosed with displasia and am contemplating surgery. I have 5 children all c-sections, a blessing, because I didn’t know I had displasia before I had children. Thank you for all of the stories, it is good to know I’m not the only one.

  51. Nikki says:

    I just want to say thank you to everyone for sharing your Hip dysplasia stories. It is comforting to know I’m not alone. I have congenital HD in both hips(bilateral) someting I was born with but I didn’t find out till 2009. I had my son (vaginal birth W/some complications) in august of 2008. I stayed home with him for his 1st year. I went back to work in September of 2009 as a Teacher in a Head Start program. I started working with children at head start in 2004 when I was 19. I didn’t have any problems with my hips until after I had my son. I am now 29 I had a PAO surgery done on my right hip in 2011 in Tacoma, WA with Dr. Keith Mayo. He did an amazing job. The recovery was rough, I was on crutches for 8 weeks and couldn’t drive. I was off work for a total of 7 months then went back on light duty only working in the office because my job working with children was physical and required me to squat, and be up and down all day. I went back to full work without restrictions the next school year 2012-2013. I have continued working with children since then, I am now working for the school district in a special needs Kinder program. Which is even more physical then before. I absolutely love it but this school year has proved to be too much with my left hip. I recently had to take 9 days off work and use crutches because my dysplasia was so bad. I had a cortisone injection on my left hip 2 days ago. I am doing much better as
    the femoral head isn’t sliding around and causing me to be stuck as much.
    I am in the process of talking with my surgeons and deciding what my next step will be; either another PAO if still possible or a total hip replacement on my left hip. I currently have stage 3 osteoarthritis, bone cysts, osteopenia along with the dysplasia. I am 29 and theres a big chance it will be too late for my to get the PAO done. Thinking and praying for all of you suffering with HD.

  52. Chantel Friedrich says:

    Awesome to see so many people dealing with what I am going through right now. I was diagnosed at the age of one and had two hip surgeries to connect the socket to my hip. I was born without a hip socket. I was able to have a normal active life until I hit college. I have been turned away by three doctors and now another doctor is giving me injections but is sending me to another surgeon for surgery. I cannot have an osteotomy because I no longer have any cartilage in my hip. They are turning to full hip replacement surgery but I am scared that I will be in a wheelchair later on because hip replacements only last for ten years or so and you can only have so many. So scared and terrified! Anyone who can relate to this, or even better received a full hip transplant surgery at a young age and is doing great!

  53. Maria Parkes says:

    just read this whole thread and my heart goes out to all of you! My story is a bit different. I am 68, have been very active in dance, running, and swimming all my life. I have had hip pain most my life but it became pretty bad about five years ago. Obviously my hip dysplasia is not as severe as most of yours. I had a hip replacememnt six months ago and I have no pain in that hip. It is wonderful! What I want to say is in europe ( I am American, live in Spain but my surgeon is German) they repeat hip replacements. My surgeon has a patient who is a sports fanatic and cycles in competitions. He wore out his hips and had hip replacements…and he is in his mid forties. The surgeon said the guy is back cycling and when those hips are worn out he will replace them again! So perhaps you can have hip replacments more than twice. And medicine is making huge advancements. So don’t count out a hip replacement if that is your only choice. My mother, who is 92, has had both hips replaced 20 years ago and has absolutely no pain at all. and she is goes to the gym three times a week and is learning to fly a plane!
    One more thing you might be interested in: my German doctor said that all new born babies in Germany are x-rayed for hip dysplasia. If they have it the baby is then wrapped in swaddling for two weeks correcting the hip dysplasia forever.
    Good luck to all of you!

  54. Megan W says:

    My name is Megan and I had a lot of hip pain starting around age 12. I’m now 16 and I’ve had arthroscopic surgery on both of my hips. I had a torn labrum and impingement in both of my hips. I was wondering if you were ever diagnosed with either of those things? The surgeon repaired those things, but I’ve recently been in a lot of pain. I had my second hip surgery in February of this year. Just when we thought everything was going well, all I did was bend down and my hip dislocated, or popped out of place. I was wondering if hip dysplasia was something that the doctors found easily, or if it was something that was hard to diagnose? What was your level of pain? Did an MRI show that you had hip dysplasia, or was it an X-ray? Please answer me as soon as you can!

  55. Danielle Bogachunas says:

    Hi,
    I am 17 and had a PAO a week ago at Hospital for Special Surgery (they were wonderful and extremely comforting). I have had most of the symptoms mentioned previously and was wondering if anybody would like to keep in touch about their diagnosis or how their recovery is going. Think it would be nice to talk to someone who is going through a similar situation right now. My email is Bogydani@hotmail.com.
    Thanks :)
    Danielle

  56. Liz says:

    I’m 35 and was only recently diagnosed with bilateral hip dysplasia. However, I have no pain. I was only diagnosed because after I had a lumbar spine fusion, my neurosurgeon saw my hips on my xrays and said I should talk to an orthopedic surgeon about it. I got three opinions, and all three surgeons were shocked that I didn’t have pain given the degree of the dysplasia, my age, and my activity level (I’m a distance runner). I’ve noticed that I have the urge to pop my hips more often now (maybe twice a day instead of twice a week when I was in my 20s). The muscles on the outside of my hip are often sore, especially after a long run or a sprint workout on the track. But I’m afraid that if I wait until I have serious pain before pursuing a PAO surgery, then I’ll already have arthritis in my hips and thus will no longer be a candidate for PAO. I’m especially worried about this given that my back required a two level fusion instead of a one level fusion because I waited for ten years until the instability in my back caused a second disk to rupture. On the other hand, I’m afraid of having the PAO surgery now when I’m basically pain free then ending up with pain because of the surgery. Do other people agree that getting surgery when I’m essentially pain free is not a good idea?

  57. Emma at Tamworth says:

    hi all
    I’m 39 and 8 weeks ago I had POA surgery for hip dysplasia. I had been in pain for 4 years before my op so when I was offered a cancelation slot I jumped at it YES at last. Surgery went well was under for 61/2 hours felt unwell for first 3 days had low blood pressure low sats and chronic back spasms so was on morphine diazepam and felt crap. It was then that I realised what I had put my body through its painful stressful for the whole family as you can’t do things for your self . I cried everyday for the first 2 weeks only time will tell if it was worth it will keep you posted

  58. Brenna says:

    It’s so helpful to read other’s stories. I am home recovering from my right PAO. Three weeks ago I had the arthroscopic surgery and two weeks ago, the PAO. I was in hospital for 6 days following the PAO, with an epidural for pain control. Yes, the constipation was a nightmare.

    I had been overweight all my life. HD was missed when I was an infant but my surgeon says I was born with HD and like many others just get through the pain. Being heavy, I thought it was normal to hurt all the time.

    In my late 20’s I finally got the help I needed with my food/weight. I lost 100lbs and began exercising. I ran races! I did yoga everyday! So happy. Unfortunately my new lifestyle really lets the PAO show itself and I was in pain everyday for four years. My pain would be a shooting sensation from my hip to my knee. For years docs were telling me my knees hurt from being heavy (partially true I’m sure)
    Over the last couple years, I would go for a run or bike ride and once I stopped it felt like my hip was locked and I would limp badly for a few days. Once the pain let up, I would start the cycle all over again.
    Finally at a spin class, I found myself in total hip agony. The instructor had to come take me off the bike. It took me getting there to finally go back to pursing help for my pain.
    I found a great surgeon and I’m hopeful the surgery will help me to ba able to have the active lifestyle I want. There are no garuntees with a PAO. I’m 32 now and two weeks after surgery I’m pretty miserable. Using a walker to get to the bathroom. I’m very swollen and in pain. Here’s hoping in a year I will be jogging again!

  59. Sarah says:

    Hey guys!! I think I am overly paranoid but when I was born, I am unsure of it my socket was too shallow or if my femoral head just popped out during the birth. They didn’t see the problem until I was 1 and walking (limping and crying). They performed surgery to fix it. I went for annual x-rays at the hospital until I was about 7 years. However, all my life I have noticed that I can’t stretch my left leg into a butterfly stretch as far as my right and I can’t sit “cross-legged” properly. I also feel that my left hip bone sticks out more than my right when I touch/look at it. However, I have no pain just a few limitations when stretching. Reading these comments has got me SUPER paranoid (I am a paranoid person). I was simply searching the web for calf strengthening exercises since I recently fractured my fibula in volleyball (unrelated to this). I came across this, and now am terrified that maybe I still have a problem that will affect me later in life. Please advise me on what to do. I know it seems silly since I got x-rays for continuous years and I am a volleyball player and a high jumper/sprinter/runner in track and field but please answer if possible. I never looked into my childhood problem until today because I have never had problems with it but seeing these stories, many people didn’t have issues until later i life.

  60. Sarah says:

    also, I am 14 years old :)

  61. Sarah says:

    Just found this website. It is wonderful to read message boards with people who are going through the same thing. People MY AGE (27) who deal with a certain pain level all day, everyday. People who research every sport they pick to see if it will cause a 10-year-early hip replacement (AKA my loved kickboxing class). Women my age researching PAO hip surgery to decide whether they want to go through a many-month recovery process now to delay a replacement surgery decades away. Good luck everyone.

  62. Ronald says:

    my girlfriend has the same problem and is 26 but the doctors in scotland want here to lose weight as she is over weight because of this problem and in reality she cant as she can not exercise because its that bad.shes been on crutches for over 6 years and it breaks my heart to see her in so much pain every minute of the day and she has to take 36 tablets a day for the pain and does nothing for her but the doctors thinks thats ok but really it is damaging her body inside an still they expect her to lose weight. we have a 5 year old daughter and we cant do proper thing like a family should and it breaks her heart. i just wish there was a doctor out there that would help :(

  63. Chelsea says:

    I’m 24 years old and I’m 3 weeks post PAO surgery. I’ve had pain in my right hip for a few years now and thought it wasnt enough stretching after playing sports. The last 6ish months it got so bad I couldn’t finish a soccer game with the level of pain I was in. I knew I had hip displaysia (shallow acetabulum) from age 21 but no medical professional mentioned the surgical options available. With this pain I sought more specialist opinions and elected for surgery to fix the labial tear, remove fragments and the PAO. I’m now 3 weeks post-op and although I spent 8 days in hospital with a couple of blood transfusions to correct the low haemaglobin from blood loss it’s going great. The pain is manageable, I’ve had moments of being completely pain free and it’s brought me to tears, I only wish I had it done earlier!!! I get that no doctor can guarantee to fix the pain but I primarily elected for surgery to correct the deformity and hopefully prevent joint degeneration, with fixing the pain a bonus. I’m on crutches for 8 weeks with no more than 10kg through the operated leg when moving and I’m managing fine with family assistance, the hardest part is going from being so active to very little!
    I will be getting the other hip done in the next 2 years around my work. Even though I have never had any issues with this hip, it’s to correct the deformity, prevent joint degeneration and prolong the life of my hip.

  64. Monica says:

    My son is 19 and he has hip displasia on both hips. He was born with thi. He was a premie and was really sick then. Developed endocarditis and this infection damaged his hips and part of his heart before they cured it. My son hasn’t had any surgery his gym time at school was as tolerated and teams wouldn’t include him because he was a health risk. Difficult to face but I totally understood. He wore the spica cast when he was an infant, then the braces and had a hip ostiotomy done when he was 2. It has been up hill for us. He’s pretty healthy now Thank GOD! But his hips are painful. The other day he wanted to know what a full day standing was like and he was in pain after 4hrs. Pushed him self till six hrs then he was in misery. I respect his resolve and drive. Hang in there girls n boys, and moms n dads. My heart goes out to you. I send you a text hi five. We do a day at a time. My sons health and story is similar but different as well. He has developmental delays and we are moving slow in all miles stones. And it’s ok. Difficult to remember when look around but when I look back its ok. He’s come a LONG way. His orthopedic doctor at Shriners said this which I loved n I quote all the time,”your no Brad Pitt, but your doing just fine!” I suggest look online for the best ortho in your areas. Best wishes.

  65. Michelle says:

    HEllo everyone! I am sorry that you all have experienced ANY pain whatsoever. We are leaving out-of-state to see a doctor about my daughter’s diagnosis of hip dysplasia; she’s only 16. I’ve read story after story and am gathering that a HIP REPLACEMENT in my daughter’s future may NOT be too bad of an option since most PAO and other invasive surgeries seems to have been horrible for most. The rationale that doctors are giving for performing a PAO is to alleviate pain and possible hip replacement. Many PAO post-op patients are having to undergo 2 and 3 surgeries and finally a hip replacement. I’m not so sure I want her to undergo a PAO. Hmmm… Thoughts?

  66. Elizabeth says:

    I am 15 and have hip dysplasia. I have had it ever since I was born. I was breeched and the nurse pulled my hips out of place. I am contemplating on getting pao but I’m not quite sure it’s worth it. I am in pain all the time and had to stop running because it was too high impact. The doctor told me my hips aren’t terrible but it all depends on how much pain I’m in. So if anyone has a second opinion on what I should do I would really appreciate it.

  67. alice vega says:

    hi
    my name is alice but everybody call ali im handlicap im 38 and i had hip dysplasia and i had surgery a month ago but my leg will not go down in bed

  68. Emily Watkins says:

    Hi everyone,

    I’m 15 years old and was diagnosed with hip dysplasia In 2015. My parents want me to undergo PAO surgery in August but I don’t want to. I want you to know more about it and mainly the recovery times for people my age and what you experienced. I’m ask petrified of needles so any advice on that??

    Thanks a million

  69. Rebecca says:

    I am 41 and was diagnosed as a baby with hip dysplasia. I had cast and brace as a baby but was not followed with X-rays to be sure it held. I had issues with the hip slipping painfully out of the socket through the years and it became more of an issue in my 20s though 40s. I had other joint issues and pain and was diagnosed in 2015 with Ehlers Danlos Syndrome Hypermobility type which is a genetic condition caused by faulty collagen that causes joint problems and dislocations among other issues. About a year before that, my hip pain on the right side was getting worse and worse. I found out soon after my EDS diagnosis that I had a labrum tear and fraying caused by hip dysplasia on my right. After seeing a couple doctors I went to Dr. Ernest Sink at Hopital for Special Surgery in New York and am now 2 weeks into recovery from a PAO. I wanted to avoid progression of osteoarthritis and provide better stability to my joint as well as relieve pain from the labrum tear because the hip arthroscopy to fix the tear alone would only have been 30% successful. I did much research online, read reports, etc and contacted many who had the surgery through a support group on Facebook called Periacetabular Osteotomy. It has been an invaluable resource before and after die support. I highly recommend it. This surgery is not indicated if you already have bad cartilage or advanced arthritis. I have only mild arthritis at this point. PAO lasts much longer than 10 years if done properly and in the right candidates and by a surgeon who is very experienced and done many of these. Do not go to one who has only done a few. I’ve read horror stories about those. They are botch jobs–you need an experienced top PAO surgeon like Dr. Sink out of New York, Dr. Millis out of Boston Children’s, Dr Clohisy (Midwest?), Dr Meh-Dan (Colorado?), or Dr Pun (Stanford I think). There are inexperienced doctors out there who’ll perform hip arthroscopies on dysplasia patients and they go bad quickly because of the shallow hip socket and bad alignment of the bones–that route isn’t worth it because the labrum will tear over and over. That wasn’t for me! Check out the Facebook support group and see an experienced surgeon before going the PAO route.

  70. Len says:

    Hi everyone,
    So glad I found this page. I can’t seem to stop crying. From when I was 10 years old I was diagnosed with an ankle condition. I have had four foot and ankle surgeries since then, none of which had helped but have only left me with arthritis at 23 years old. I Have had hip pain for years and was finally diagnosed with bilateral hip dysplasia. The left hip was much worse and also had a torn labrum so I went in for arthroscopy and two weeks later pao. My surgeon is quite capable and had also performed two of my ankle surgeries so I know him well. I am now 11 months post pao. The pain from the surgery is still quite painful. It took my bones much longer to heal- total of 7 months. I was on crutches for 5 months. I started therapy at the 7 month mark when the hip was finally safe to be moved. I seem to be doing okay some days in therapy but life happens and I keep regressing and I can’t stop the pain. On top of that my right hip is now in a lot of pain. I cannot decide which hip I’m limping on. My therapist pushes me until I start having pain and we need to stop. My inflammation is really bad and Ice rest aleve etc are all not helping. What is my next stop? Pain management doctor? I can’t sleep and I can’t focus on daily chores. Driving, showering, laying down have all became dreadful. My surgeon knows I’m in pain but says the x Ray looks well and as long as there’s minimal progress then that’s enough. My last flare up feels like I’m regressed back to a few months ago and wiped away any progress I’ve made. Help. I just want to be pain free

  71. Lisa says:

    Wow I see I haven’t been alone on this.
    I was diagnosed when I was a baby and had surgery to correct it. I’m am 45 years old and have never been able to do the things I’ve always wanted to do like horse back riding, sitting Indian style and many sports. The list goes on and on. I’ve been rendered totally disabled. Over the last 4 years I’ve had lower back surgery,3 foot surgeries and just had to have total hip replacement on right hip. And may have to have right knee replacement but not pushing it, I’ve been through enough already. One thing I wish to be able to do after healed is sitting Indian style. Then maybe later on horse back riding. I know how you all feel I’ve lived with pain all my life, I just pray I’ll be free of it’s nasty grip on me soon. God bless all of you and your all in my prayers.

    Lee

  72. Madi says:

    Hello everyone,
    I was just diagnosed with hip dysplasia about a week ago. I just turned 20 years old, and I’ve been having pain in my left leg/hip for about 5 weeks now. I have played soccer my whole entire life, and I’m currently playing college soccer. I’m going into my junior year, so I only have two seasons left of soccer for the rest of my life. My doctor said I have hip dysplasia and hip impingement. He told me I was born with hip dysplasia, and it just makes me wonder why it hasn’t ever hurt me all of these years I’ve played soccer, until now. He is an expert in arthroscopy, and he told me that even if we did arthroscopy, my pain wouldn’t go away because the impingement is only secondary to the dysplasia. Therefore, my only answer is to have open hip surgery. I just got a MRI, and I’m waiting to go see my doctor for results. He wanted me to take the MRI to see if I have a stress fracture or if anything is torn. He said since it is what it is, I have the power to decide if I want to continue playing or not. As of now, I’m going to try and finish my soccer career and postpone the surgery for as long as I can. I’ve played soccer forever, and it’s a big part of my life. Soccer is my happy place and where I can escape reality, plus I’m on scholarship to help pay for my college. However, I’m a little nervous about how bad the pain is going to be if I continue to play. I haven’t been running or playing as much now because I’ve just been resting to see what all is wrong with me, so I’m still unsure if I’m going to be able to deal with the pain. My season starts in about two weeks, so I’m very nervous about it all. I never imagined this would happen to me. After reading all of the stories on here, I’m more scared than ever. Surgery altogether just makes me nervous, and then reading about how some surgeries didn’t fix the problem makes it worse. My family doesn’t make much money, and our insurance doesn’t pay for a lot of things. I just don’t know what I’m supposed to do. I don’t know how my family is going to be able to afford a big surgery, yet alone even multiple surgeries. I keep praying for answers. Thank you all for sharing your story, God bless everyone!

    Madi

  73. Libby says:

    My son was diagnosed with Hip Dysplasia and labral tear yesterday. He is 15 and a competitive gymnast. we knew he had a labral tear and was in search for a doctor to repair that. we finally found one that could but only to find out he also has hip dysplasia. He has already had a cortisone injection and that only helped for about 3 weeks. He suggested PT to see if that would help and PAO as our last results as that would end his Gymnastics career and chances of doing it in college.

    He is in pain when he runs, gets into the car, etc. We were told there is not a doctor in our area so he would have to refer us out of state.

    We don’t want to ruin his chances of following his dreams if we have this surgery but if we don’t, won’t it just get worse. or if we do, how long is recovery and will he ever be able to get back into doing the sport that he loves? UGH! so many decisions!

  74. Alyssa says:

    Hi everyone, it’s Alyssa from the 2013 comments back, haha. Well, ever since I found out I had HD in 2013 I kind of pushed through the pain and kept playing sports. I even ran cross country last year and was suppose to make it to state this year in cross country and track. Although, I tore my labrum at the end of the season and my hip dysplasia even worsened too. The pain is pretty bad. This Thursday is my PAO surgery and I’m very nervous….I’m going to miss over a month of school and it’s my senior year. All of your stories have been helping me some what ease the nerves. Hoping everything goes good Thursday, I’m expected to be in the hospital 3-7 days.

  75. Carlie says:

    Hey guys! My names Carlie. I found out I had Hip Dysplasia when i was 14. I was a freshman and i missed over 60 days of school going to tons of doctors. No one wanted to do my surgery because not only did i have Hip Dysplasia i had severe internal tibial torsion. I am currently 15 by the way. But my mom finally got a call from my orthopedic and he said we found you a surgeon. He said hes at vanderbilt hospital in nashville and hes not only a surgeon but hes researcher. So i went to vanderbilt and talked to the surgeon who told me i have to have two surgerys done. One hip/leg at a time. He also said itd be 18 months before i will completly be recovered. So august 16th of 2016 i went for my frist surgery for my hip and my tibial and it took 5 hours but i came out and within 5 days i was able to get out of the bed and start using a walker. The last day i stayed in the hospital they showed my how to go up stairs which honestly wasnt that hard. It is no October 12th of 2016 and i have my boot off and im able to walk with one crutch. Ive went to physical therapy 4 times so far. Its very difficult but its what has to be done. I will get to have my next surgery sometime after november. Ive been out of school for 3 months and i get to go back October 17th. I hope all of you enjoyed my story. Thanks!

  76. sherry says:

    carlie, wondering who done your surgery at Vanderbilt? that’s where my son is going.

  77. Rhianna says:

    My name is Rhianna and I was diagnosed with a labral tear, snapping hip syndrome, and dysplasia at the age of 12 on my left hip after my hip snapped in my acro/dance lesson. I had been doing dance ever since I was 2 but never had any issues with my hips back then. My dance teacher was really pushy and didn’t care that I was hurting and would grab my leg and try to get it past my head, and having dysplasia made me a lot more flexible than the rest of my friend in my class, so I was always asked to do examples and to do tricks for competitions and concerts. I remember having my first solo lesson doing contemporary/jazz and she asked me to do high kicks and aerials and I told her that my hip was hurting and that I couldn’t do them, (before I knew what my symptoms were) but she kept pushing me and eventually it gave way so i started to use my right leg but then that gave way too! I had done a dance work-shop before that with Rebecca Davies and she liked to push me as well. I then had to quit dance because me, my parents and my physio thought it would be best for recovery. After that, I was diagnosed with what I have, I realised how careful I had to be when doing other sporting activities. I went to many different physiotherapists that gave me so many exercises and tips on how to control my hip and to try keep it in place or make it worse, and I had many x-rays and MRI’s. My hip hurts when I walk or sit for too long, when I run, when I bend backwards pushing my hips forward and when I put my legs close to my chest, and I realised that having these symptoms restricts me from my everyday activities. I have to have keyhole surgery in a few years for my labral tear, then have surgery on my dysplasia after. I have been reading the blog posts and I am a bit scared of having surgery. but I am 13 and a half so I shouldn’t be worrying. My friend from dancing recently had keyhole surgery on her labral tear and took 2-4 weeks to heal. But apparently dysplastic surgery is a lot worse and takes longer to heal and is more painful. my parents don’t want me to have surgery till I have finished school but I don’t want to have to put up with another 5 years of my hips hurting. I often have spasms or shooting pains down my leg and I can’t walk. I remember getting out of bed one day to get to school and my hip started spasming, so I bent down to massage it then my hip popped and it was so painful that I couldn’t move at all. For the rest of the day I was on my bed having constant shooting pains and spasming. it eventually settled and after sleeping it was a bit better. after getting a referral from one of my physios, I went to a guy called Gitt Balokomarh who was very good. he gave me very good advice and explained exactly what I can and can’t do, and I have to visit him every year. Instead of dance, I now play the drums and I love photography. even though I had to quit what I loved, I am sort of glad I did stop (my 12 hours a week) dance because I can now explore other things and make new hobbies. :) xoxo

  78. Alyssa says:

    Hi there everyone, it’s officially been 15 weeks since my hip PAO surgery and let me tell you, it was way different than I expected. Doctors Clohisy, Nepple, and Shenecker did a phenomenal job. I just now started walking again without crutches and the difference is evident. My hip no longer hurts when walking and even sitting. This surgery was a great choice, and the journey definitely was worth it.

  79. Giuseppe Lowe says:

    I found out I had Hip Dysplasia when i was 14. I was a freshman and i missed over 60 days of school going to tons of doctors. No one wanted to do my surgery because not only did i have Hip Dysplasia i had severe internal tibial torsion. I am currently 15 by the way. But my mom finally got a call from my orthopedic and he said we found you a surgeon.

  80. JHo says:

    Hi, I just underwent PAO surgery for hip dysplasia and have a question for anyone that underwent that surgery.
    Have you been able to run after your surgery/participate in any sports?
    I’m really waiting to play football again but my surgeon suggested that I shouldn’t jog ever again. I wish he would’ve told me that before the surgery.

  81. Maxine says:

    Hi I was 23 when I was finally diagnosed with hip dysplasia. After 2 years of different types of physiotherapy amongst other treatments for what they believe was muscle injury or trapped nerves, when I was finally diagnosed my hip was in such a mess I had to have a total hip replacement on the right side. Now I am 27 and never really been out of pain since my early 20s, my dysplasia of the left hip is now the problem, I also have torn cartilage, so I keep getting a lot of swelling. I was told that PAO would be no help to me as the arthritis was too server even in my left hip.
    I am currently awaiting my second total hip replacement at 27 years of age. I just hope people get diagnosed earlier than mine as it’s not been an easier journey and it won’t be over any time soon!
    Before all this become I was a very active person I used to do dance class, athletic/weight training all through my teenage years and I also used to Thai box. I started must Thai at the age of 17 and was still doing this until I was around 21years of age, when my physiotherapy and other treatments begun. I was told I will never be able to do all I once did and will be restricted on certain activities for the rest of my life.
    I never thought the problem i had would be as server as it was although I didn’t know what I was starting with.

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