Suzie

I am 44yrs old now and was only 18mths old when I was diagnosed with Congenital Dislocation of the Hip (RHS), I cannot remember much of the treatment as I was only small, but my mum has always discussed that time with me.

Last of 7 children I was trying to walk when my mum really noticed an issue, I initially would crawl dragging my right leg and when I did try and walk I would fall over and cry, a cry my mum could tell was pain. Despite numerous trips to the doctors, my mum was told that I was just a lazy chubby baby and that I would walk eventually. My mum demanded a second opinion and eventually I had an xray at 18mths old where they discovered my hip problem.

After being in traction, undergoing surgery to cut the tendon in my groin to allow my hip to move into place, two pelvic osteotomy and a final operation to remove pins, I was up and about by 4yrs old. Check ups took place annually until I was around 14yrs old. I have led an active life, selected to represent my school in 100m hurdles, years of aerobics, step, combat and long distance cycling sports, my hip has never stopped me from doing anything I wanted to do (other than long distance running).

For the past 3 years I have started to have a burning pain in my right buttock when I walk, sometimes this happens when only walking for short distances. I can also tell when the weather is on the change, I often will say its going to rain before it does as I have an ache down the back of my thigh. I have recently mentioned my burning pain to my doctor and she arranged an xray which showed little degeneration of the socket since my previous xray, however I have now been referred to a specialist in UK to discuss why my hip has started to burn. Would be interested to hear from others of my age on how their hips have faired at this stage in their adjust lives. Am worried to learn if I need a replacement.




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  1. Susan says:

    My daughter is 30 and was diagnosed with DDH when she was 23 she has had PAO surgery on both hips. She has had the same pain that you described and was recently told that she will need to have a THR. Not what you want to hear but the replacement joints keep getting better and it’s better than walking in pain.

  2. Jen says:

    I’m 43. Diagnosed with hip dysplasia at 1 yr old.
    After a year of treatment and surgery, I began to walk again and was able to lead a very active life. As a teen, I competed in many sports including cheerleading, track, tennis and basketball. I stayed active as an adult with working out and have no issues until recently.
    My right hip was affected but my left hip now has bursitis flare ups now and then. I treat with ice, rest and anti inflammatory and it’s manageable.
    Thanks for sharing your story and being an encouragement to others!

  3. Helen says:

    I was diagnosed with congenital dislocation of my left hip at 18 months old. I had a lot of surgery and was never able to do any sort of sports. I am 42 now and have needed a hip replacement for the last 8 years. I won’t go for the replacement yet as the success rate is only 10 years. I have been told a further hip replacement could end in me being a wheelchair. I am hoping for advanced technology in this procedure to last more than 10 years.

  4. Suzie says:

    I have now seen the specialist, it was an interesting consultation where he examined me and said that I had more mobility in my hip than he has :o) I have been told that there is nothing wrong with the joint itself, but the pain I am experiencing maybe down to nerve pain from my back! I have quite a tilt to my pelvis, this has resulted in my lower spine being kind of c shaped, am now waiting on an mri scan to check for nerve damage/pinching.

  5. Nai says:

    Hi,
    I was also born with shallow sockets which means my hips weren’t completely dislocated but the femur wasn’t fully covered. I underwent tratment for babies with displasia to correct this little malfomity. The treatment consisted on wearing a very thick nappy.
    I never had any further problem. I practiced soccer for years as a teen and did ballet. What I did noticed is that my hip naturally rotates outwards and I walk with my legs slightly separated (according to the surgeon this is my body trying to protect my hip). Only that, funny alignment and way of walking.

    It wasn’t until I was 29 that I started to suffer pain, first in my right hip, then in my buttock and finally my lower back. After an MRI and an X-ray a hip surgeon told me that I had a tear in my labrum maybe caused by a little femur impingement. According to hip there wasn’t hip displasia. I wasn’t satisfied since my medical history and the deterioration of my hip was telling me this was something bigger.
    I am originally Spanish so I went back to my home country to look for a true expert. After a lot of research I decided to visit a top physician in Spain, who is the head chair of a vast number of hip surgeons in a clinic in Barcelona. Some of these surgeons come from other countries such as Germany to be part of his team. He constantly trains other doctors from the south of France etc. In conclusion, he’s been on top of the game for about 30 years.
    I got an appointment with him, I had new X-rays with me with my legs opened that I had been told it was necessary to diagnose displasia and bingo. After checking my tests he tells me that I have a residual hip displasia. He calls other members of his team to double check and they all come up with the same conclusion.
    He advises to get an ostiotomy to correct the structure of my bones and make the Mecanic of my hip much more efficient, which would save the damage to my joint. He makes it through an arthroscopy, and he would fix my labrum as well. I have some damage in my ligament so he recons that if I continue like that I might pull my ligament out. Apparently my hip is not very stable. I also have a really good range of motion since my hips are out of the socket!
    Sorry about the long story. Now, this is what I’m planning doing: I’ve been swimming religiously everyday since my last visit. This has almost made my pain go since more muscle makes your hip more stable. In 4 months I’m having the surgery with him and his team: 2 hips surgeons, a neurologist that will make sure he doesn’t touch any nerve and the anesthesist.
    This is an expensive surgery yet my health is the most important thing I have. If it doesn’t go the way I expect I did everything it was in my hand to not to get a hip replacement at the age of 35. My physician is very positive about the results I can obtain and since he’s so experienced and reputated I trust him 100%.
    I’ll keep you posted with future results. Surgery is taking place in June. Please, wish me luck.
    Nai

  6. Katherine says:

    Also 44 & keen cyclist. 2 femoral osteotomies & very similar history. Would love to be in touch.

  7. Suzie says:

    Katherine,

    Feel free to contact me :o)

    Suzie

  8. Pamela says:

    Hi everyone. I would love to be part of this group and thank you for sharing your stories.

    I’m 44 and was born with Cdh where my left hip was dislocated at birth. However, it wasn’t picked up by doctors then and I was diagnosed at 3 months old, which made the conventional harness method unsuccessful. I went on to have 6 major hip surgeries between ages 15 months old and 6 years old, each year surgery failing and requiring more surgery the following year. It wasn’t until aged 6 I could walk well but with a limp and was fitted with metal plate and screws.

    I went through life fine and did a lot of exercise. I had no trouble until my first pregnancy in late 30s where I had excruciating pelvic pain, and saw surgeons again who informed me that this pain was due to pregnancy hormones relaxing my ligaments and joints, but since my pelvis was asymmetrical due to childhood surgery, the pregnancy hormones, my pelvis was actually dislocating with every step.

    After my first child was born, I noted mild hip ache and saw the surgeon again. They x-rayed and confirmed the onset of arthritis in that left hip. He told me that most patients with the severity of childhood surgery that I had endured, had needed hip replacement by the age of 30. He said it was inevitable that I would need hip replacement at some point.

    Upset to hear this, especially as I kept quite fit, I took a second opinion with a more specialised surgeon who told me that my hip was still well preserved with a good range of motion, and that there was no way of knowing if I would need a replacement, but if I did, they would have to remove my plate fitted at 5 years old and screws, before doing a more specialised replacement. This surgeon told me to live my life as normal and come back if I had any more problems.

    And I did just that and had a second child. I have been fine until weeks ago where suddenly I have a lot of pain in this hip and the site of the plate, which is near the top of the femur. I’m petrified that I have damaged it somehow, and also think new orthotics may be affecting my alignment and causing added stress to the joint. I have relaxed my exercise regime and using ice and rest, as well as resorting to an old orthotic, and am seeing some improvements but still am worried as haven’t experienced pain like this. Extra tough with two young children.

    I would be interested to help hear how those of you requiring surgery are managing n adulthood, as well as your experiences with total hip replacement in our more complicated cases.

    Happy to chat privately also.

    Thank you for listening.

  9. Sherry says:

    Hi, I was around 17 months old when I had my surgery. I also had Congenital Dislocation of the Hip but it was my left leg. After the surgery in 1969 I wore a body cast for 3 years then braces and rubber bands, then elevated shoes throughout elementary school. Over all I would say the surgery was a success! I’m now 50 and having pain in the same area plus the groin. After my current ortho reviewed the CAT scan he’s now referring to me another specialist since my hip socket is over 50% deteriorated and my anterior bone shows very little to no opening. Also have cyst between the bones which is painful. I’m truly scared to death since in the USA we have no way to find out from the medical boards a doctors ranking only complaints. I see the next specialist on the 15th of Feb and I’ll let you know what they say! I hope yours isn’t as bad as mine and that the UK has better resources for you.

  10. Mansi Yogi says:

    Hi Nia,

    This is Mansi Yogi from India.I was born with Congenital Hip Dislocation in left hip. Luckily, I am not suffering much pain due to this. Living quite a normal life with certain precautions to take care of. But, I have to wear elevated wedged shoes to stabilize my both leg’s length. I would like to know whether your surgery went successful, so that I also can think about it.

  11. Suzanne says:

    What a wonderful site. I think I have you all beat in age. I am soon to be sixty born in 1959. I have an interesting story to share as it was told to me. My parents were stationed in Germany and I was born there. My mother noticed that when she changed my diapers I didn’t kick my legs. I was the third child so she was an experienced Mom. The Canadian doctor on base told her there was nothing wrong and it was all in her head. A young officer who was also a translator took my mother aside and offered to take me to a German Dr off base. At this time in history I don’t think medical knowledge was shared internationally as it is now. At 6 months of age I was put into a body cast which apparently allowed blood flow to the femur head. (so I was told). After that braces for about a year.
    I ran and jumped and played like any normal child. I used to have to go to Toronto Sick Kids hospital every year for an examination. I was told at one time that I was one of the first Canadian children cured of this affliction. My mother, grandmother and great grandmother all had congenital hip dysplasia.
    Now comes the familiar thread I see in all of the stories posted here. At about 50 I started limping with over exertion or long distance walking. Now I have been diagnosed with “Chronic bursitis”. The Dr. is wonderful but seemed to dismiss my history and says they are not related. I beg to differ. I demanded a full MRI of the hip. Get this. I have also recently had 2 small basil cell skin cancer spots removed and the Doctor in Nuclear Medicine says. “That qualifies you for a TOTAL CT bone scan. Who knew this was policy in Canada? I bet many don’t.
    Some times the pain in my hip is so bad I can’t sleep. That wrecks havoc on your over all well being.
    Results in a week. I think the disorder also affects the ligaments and soft tissue surrounding the joint. No one seems to talk about that.
    I do believe that researchers could learn a lot from my generation or our generation and the future of other born with this anomaly.
    This sight is primarily meant for parents and babies born with this and I think it could use a much more comprehensive and in-depth look at adults and their concerns and issues.
    Thanks for listening.
    Suzanne

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