Born in 1961, my Bilateral Hip Dysplasia was not diagnosed until age 18 months. I was child #5 for my mother who had to insist on further tests as I wasn’t able to stand or walk. A basic leg manipulation showed no issues. Xrays showed not only dislocated hips but that they were grossly deformed and undersized, pointing in the wrong direction! I was put in traction for some time and then into the body cast, which went from my armpits to ankles and had a fixed rod holding my legs apart. This cast was removed every two months, my legs rotated into another position, X-rays taken and another cast was put on…..for close to 5 years! After that, it was a bar braced between two shoes with the toes cut out, to slowly bring my legs back together. That took six months to accomplish. I still have the ‘rig’ in my office at home, looking at it reminds me to be a good girl and to not take walking for granted, which I never do.

I was not permitted to play with the rest of the kids, no running, jumping, bike riding or roughhousing with my brothers and sisters, but could swim and walk. By the age of 15, I required a PAO on the right acetabulum and the next year the left side had one as well. Both were successful. My right side was always more painful, shorter leg length and had a limited range of motion.
Move ahead to age 29….I moved to the Yukon, Canada. I was working with special needs children at our school and walking was becoming almost impossible due to right side groin pain, limited range of motion and when bending over the hip would lock into place. I simply couldn’t move by myself, and when I did it clunked and popped….I LOVED that the kids thought I was ‘special needs’ and helped me get up and around, taking turns holding me and my cane.
No doctor would touch my hips because of my young age, but I’d heard about an Orthopaedic Surgeon at another province. I found his number and called him directly from my home in the north. He asked me to send him my recent x-rays (those were the days) and called me when he received them. After a long conversation and my history, he agreed to replace my right hip first, three days after school broke for the summer. It was a difficult surgery with adjustments to the prosthetics and my pelvis, but I was back in school in the fall, feeling wonderful and able to walk with just a cane again. Apparently, I had developed Traumatic Heterotopic Ossification (THO) all over the place and needed the removal of bone frequently. He replaced the left hip two summers later along with more excess bone (THO). The femur cracked trying to slide the shaft down inside so a hybrid was used that required glue. He gave me a really good piece of advice. “Wait until you can’t walk anymore at all before you have your liners replaced” Before the time came he was hit by a snowboarder on the ski slopes and died in the arms of his wife of 53 years….! Not long before that he had emailed me from Istanbul to ask how I was making out. Seriously, they don’t make doctors like that anymore. RIP Dr. Charles Sorbie.
On to another surgeon on the west coast who was to do a simple liner replacement and more THO bone removal, followed by radiation to stop it reforming. He opened me up but the prosthetic was so old he didn’t have a liner that fit….so he removed everything and started over. He also moved the acetabulum back changing the alignment. It dislocated 10 weeks post-op while I was getting up from the sofa. Two air ambulance rides, three hospitals and six re-insertions that wouldn’t stay seated and I wake up days later in Vancouver outside the OR, ready to have my incision reopened and the hip put back in AGAIN! It wouldn’t stay ‘in’ so that surgeon removed everything AGAIN and, after some adjustments I am sent home. He said it is never going to be ‘right’ and to be careful twisting, turning etc. No raking, vacuuming, shoveling…. it is only a matter of time before it pops out again.
It goes on and on…but then I start ranting and this isn’t the forum for that. My best advice is what Dr. Sorbie said, plus be absolutely sure of who does what to what part of you. The relationship you have with your surgeon is like a dance partner…if they keep stepping on your toes and pushing you into something that doesn’t feel right, switch partners…get a second opinion and do your research first. Ask lots of questions and make sure you know exactly what is being done and why. AND BE PROACTIVE with your health, not reactive…oh, and one last thing, you are not alone out there.

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  1. Rhonda says:

    Dear Patricia,

    I’m so sorry for all you have endured and then to be told this news. Is it possible to find a new dance partner who may be able to fix this?

  2. Patricia says:

    Hello Rhonda. Thank you so much for your concern. I meet Dr. Second Opinion for a dance recital this October, after a 20-month wait. The referring Ortho. said he’s worth the wait. Fingers crossed for a positive result.

  3. Tamar Galanos says:

    Hello Patricia,
    Can you recommend this new doctor? I’m looking for a specialist for my 70 year old dad with Hip Dysplasia. Thank you!

  4. Patricia L Amero says:

    Hello Tamar. I’m so sorry to hear about your Dad, it must be so disheartening to see someone you love struggling and in pain? As for your question, I have yet to see the new doc, but Oct is the promised month for me. A visit with your Dad’s GP by you might help you all in figuring out a game plan, tests, timeline and what YOU can do to help speed up and facilitate your preferred clinic/surgeon. I wish you and your Dad the best of luck and that many long unanswered questions be addressed with this fantastic institute- IHDI, which lists associated medical specialists all over the world and also other medical sites on the internet. Wonderful resources. Cheers!

  5. Katie Berry says:

    I also have bilateral hip dysplaysia. I was born with it. I am now 42 years-old and mad. I have had three hip replacements in the past 5 years, starting when I was 37. Two of these surgeries have been since April 29 of this year, 2019.

  6. Patricia L Amero says:

    Hello Katie.
    It’s wonderful to meet another ‘BHD’ person, but I’m so, so sorry to hear what you’ve been through! That’s terrible that you’ve had so many surgeries so close together, something must have gone wrong somewhere. Let me guess…they replaced both but one failed and had to be redone. I bet it’s always been your worst side and now you are totally reliant upon the other side that is slowly becoming bad itself? Am I right? All you want is to go back to work, get your old life back and be a productive member of society again? Where are you located?

    Feel free to email me at I don’t have all the answers but I have learned that all the medical terminology is overwhelming and confusing, one has to be a detective and proactive about your own case and health.

    Has anyone ever mentioned Heterotopic Ossification to you? Have you ever had excessive bone removal during or after your THR? Did you have surgery early on as a child or in your teens? The reason I ask all of these questions is my current situation is that the left femur is so thin it’s ready to shatter (but feels strong and is without pain)and the right is not the prosthetic area that hurts (even though it’s a mess in its own right) but huge amounts of excess bone formation from HO in the muscle of my butt…owww!…that I got from trigger point injections that literally turned to bone in my butt muscles. It’s around the Sciatic Nerve and tailbone as well. It’s also in my jaw from dental injections for regular filling work and one shoulder from my bra strap…the list is long! It can be brought on by hip replacement surgery etc and also brain injury or just ‘because’. If you Google Image Heterotopic Ossification it will make you cry…or at least I did. Anyway, it’s just a thought but something people need to be aware of.

    Please email me if you want to talk about anything and I will be happy to share what I’ve discovered through my own journey, which is still on-going but also hear about yours. It really helps to share with someone who truly understands what you mean. If not, I understand. I’m so pleased that the IHDI exists, my parents sure could’ve used this tool when I was a baby and in a body cast.

    Take care, and I hope to hear from you soon.
    Cheers, Pat

  7. Terri Lynn Loomer-Seaton says:

    I am doing some research for my friend who has bilateral hip dysplasia and is looking for the best surgeon. She is in constant pain and is 42 years old. I am sure she would want to get on here and talk to someone– I am just trying to get some preliminary info as she is super busy with work. is there a way to email me who you the surgeon is and your satisfaction with the outcome?

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