Congenital dislocation of the hip leading to THR

Bones, joints and muscles
1

I'm wondering how many other people have had to have THRs in later life following being born with congenital dislocation of the hip?  I believe that this is not the same as dysplasia but may be similar. 

I was born in 1953 and at age 18 months was discovered to have CDH on both sides with the left hip socket being virtually non-existant.  This had shown up because I was not walking properly and was dragging my left leg.  I was then put into 'frog' plaster for 18 months followed by leg irons until I was nearly 4.  I suffered pain in both legs, couldn't run and walked with a limp all my life until at age 40 both hips joints disintegrated to bone on bone.  By this time I was walking with a stick and on cold, damp days couldn't get out of bed.  In the meantime, however I had had two children born naturally (my OS couldn't believe it when I told him!!!)when I was in my 20s.

Anyway, when I was 40 I had both hips replaced - 11 weeks apart and after that my life changed so much.  I was able to walk for miles, climb hills, dance, wear incredibly high heels(!) - all the things I hadn't been able to do for 40 years! 

So, I've now had 20 years' of all that but in July this year, after rock'n'rollin all night at my daugher's wedding, my right hip decided to disintegrate and I had the revision just four weeks ago.  I'm hoping that once I've recovered from this I'll be able to enjoy life just as much as I did before.

I'd be interested to hear anyone else's stories of CDH.

Thanks for listening,

Stella

2

Hi Stella

Sorry havent got a story like that but you have been through a lot in your life havent you

20 years of good life is great after being born like that

Her's hoping the revision works just as well and you can go and kick up your heels again soon 

3

So hope evening will be great after healing.smile

4

WOW Stella,

What a life you've had with ups and downs.  I learn so many different things on these forums.

I hurt my hip, tore my labrum 10 yrs before my hip was bone on bone at 47.

You my dear are brave and amazing!

I hope your hip works out wonderfully! !

Hugs,

JiLL

5

Hi Stella, I was the same as you. I was born with a congenital dislocated hip which wasn't detected until I started walking. I had a pelvic osteotomy at 18 months and was also in a frog splint for months. I was very lucky, my op was a total success and I was able to take part in almost all physical activities.

I also have 4 children who I managed to deliver naturally. I'm 36 now and had a left total hip replacement exactly 3 months ago today. I can't tell you what a difference this has made already, I'm able to be so much more active again.

It's so encouraging to hear your story, as I had some concerns about having the op so young, but was finding the pain so debilitating. I'm so pleased to hear that you had so many years pain free after your initial replacements. 

I hope you make a good recovery from your recent revision and have lots more active years ahead of you.  😊😉

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Hi Lucyloo.  thank you for your reply.  things had obviously changed a bit between our birth dates and moved on.  I don't think it was possible for me to have a pelvic osteotomy in 1955.  You too have been through a lot and I know this hip replacement is going to give you a completely new lease of life and hopefully you won't need a revision in the future now that techniques and prostheses have improved so much.

Get out there girl and enjoy life to the full cheesygrin

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Thanks Stella, you too!! 😜😜

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Hi Stella

I have Ddh (or CDH) too, on both sides with the left hip being worse. I was born in 1962and mine wasn't discovered until I refused to walk any more when I was 6, our family Dr said I was attention seeking! It had always really hurt to walk but I was ignored by my Dr. My left leg had dislocated and slid 3" up the side of my pelvis.

I had one of the first osteotomies in the UK (if not the first as I was led to believe) when I was 7 and have only just had that hip replaced nearly 10 weeks ago, my first surgery lasted 20 years longer than expected. It actually lasted 45 years.

However my right hip which wasn't so bad and was left alone just failed catastrophically one day to my utter surprise as I didn't ever expect it to. I had an osteotomy on that one  in 1994 which was ok but I didn't ever recover as well as my other hip and was disabled for many years as I stupidly resisted a replacement for several years. I gave in and had it replaced 6 years ago and wow, my life changed so much that I had no worry about having the other one done, except that maybe it was too soon, which it turns out it wasn't as the joint was shot when he removed it in July.

Im so grateful that I will have my mobility back when my convalescence is over, it will be even better than the one hip, I can't wait.

best wishes with your new hips Stella and yours too Lucyloo

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Oh my dear it must've been awful for you as a child and not being believed.  I hope those doctors were suitably chastend when they saw your x-rays.  At least I was only a baby so hardly remember any of it - except every three months I had to have the plaster changed and my hip manipulated underr anaesthetic and I still sometimes dream about the black mask being put over my face to anaesthetise me - I usually wake up screaming which terrifies my husband!!

I'm sure that now you have had your hip replaced you will soon be getting around again and without any pain - that's the bonus!  This hip will probably last you a lifetime now.

I'm just over four weeks' post op now and really felt I turned a corner last Friday as I now have very little pain at all and am getting around easily on just one crutch in the house.  Yesterday I went for a 25 minute walk and although it felt a bit achy it was in a good way - just muscles complaining after not having done much for the last two months!

Obviously our hip problems are not that common.  I do have a friend who had something similar which wasn't diagnosed until she was about 6 or 7 and then she spent a long time in the local orthopaedic hospital having treatment.

I wish you a speedy recovery and lots of dancing to come!!!

Stella x

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Hello, I was born with a dislocated hip that wasn't picked up until I was crawling with one leg at 6 months, I had a series of op's and traction etc and ended up with a plate and pins down the side if my leg which had to be removed when I was 14 as they had rusted and bent out of shape, I didn't have any problems up until then, I'm 48 now and had THR 17 weeks ago, everything seems fine except I still have a bit of pain down my outer thigh where the plate was, I was told my bone density there was very poor so I'm wondering whether I will always have this discomfort?, it's great that you are getting on so well xx

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Hello Jackie,

It's interesting to hear of other people's experiences of CDH and hip dysplasia although we seem to be in the minority!  I really hope your THR gives you a new lease of life.  Maybe the bone density will improve, especially if you can get some vitamin D (either sunshine or Cal-in yoghurts which have been recommended for bone strength).

I was 40 when I had my first hip replacement and you're not that much older than I was so I'm sure you're going to have a long active life ahead of you and hopefully less pain than before.

It's good to know we're not alone!

Stella xx

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Oh my goodness, you really have been through the mill. Good luck for your recovery, you deserve it. 😉

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Hi Stella

I hope your recovery is going well.

I was also born with CDH - in both hips - which wasn't diagnosed until I was about 18 months old and not walking properly (it was my aunt who persuaded my mum that something was wrong). I had years of A-frame plasters and a calliper on my left leg, which I can still remember having to take off at nursery school in order to have a mid-day nap in the camp beds! When I was 8 I had what was called a shelf operation to build me a socket for my right hip.  It obviously did the trick because I was very sporty as a child and at university, and continued to play hockey until I was 38.

i have just turned 50 and in the last 15 months things have really gone downhill.  I have always had very limited mobility in both hips but the pain has started to get quite bad on the left side - I struggle to walk round the house and don't even walk to the shop over the road anymore. I get on my bike or take the car. I don't sleep well because I can't get comfortable. Having struggled through my summer holiday I finally plucked up the courage to see a consultant at the end of August. The x-rays weren't good, but he said he'd seen worse.  He suggested I use a stick, which I hate but use when things are really bad, and physio.  Not sure the physio is doing any good as I know my left hip has got worse in the last 2 months. I'm now on prescription strength codeine and ibuprofen just to get through the day (and night).  I was really adamant that I wasn't going to have surgery when I first saw the consultant, but now I'm not so sure.  One of the last things he said was "Is it bad enough to risks making it worse?", and at the time the answer was no.  I'm due to see him again at the end of November and he said he wanted to inject each hip with anaesthetic, and if that got rid of the pain then the hips were shot. I think he's just given me a bit of breathing time to think about it.

What really worries me is how my family will copy if the outcome is worse, and also the recovery - I'm a 'can't sit still' type of person.  My physio keeps telling me to do less, but there are certain things that need to be done, especially when hubby works away a lot!

Sue

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Hi Sue,  It sounds as though your original surgery was a success.  I don't think this kind of thing was offered when I was a baby!  I was never very sporty at all, in fact would get out of games and PE at school as often as possible!  I can understand your concerns regarding surgery.  For me, it was the absolute making of me and I never looked back over the last 20 years.  However, it does take quite a while to get over the op and you will need a lot of support and help whilst you recover.  I'm also not one for sitting around but have had to do so for the last three months (one month before the op and 2 since).  Everyone heals at a different rate and I think mindset also has a lot to do with it - if you are determined to get well you will but on the other hand you might just go and do something you shouldn't too early on in your recovery and set yourself back.  When I had my hips replaced back in 1994/95 I was a single mum.  I was lucky enough to have my mum come and stay with me for a couple of weeks but after that I was on my own.  I had someone to help me in the house and my daughters helped me to get my socks and shoes on.  I remember making up a flask of tea or coffee in the morning and putting some sandwiches into a container and then putting everything into a carrier bag to get it from A to B - you can't carry a cup of tea when you are on crutches.  After a couple of weeks I was able to hobble around my very little kitchen and make simple meals for the girls and myself but during the day I rested as much as possible.  You do get very tired after an op.  I have only just stopped having an afternoon rest now at 7.4 weeks post revision.  I'm now swimming 3 times a week and doing some very gentle yoga exercises to help with mobility.  I'm just using a walking stick to get around (still can't put my full weight on the operated leg) and am walking the dog about a mile and a half in the mornings. 

I hope when you see your consultant next month you will be able to make a decision and I wish you all the very best.  Keep in touch.

Stella

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Hi Stella

i was very interested to read your story. Was your CDH the hereditary type?

My mother has always claimed that mine was due to being a breech birth and was dragged out with difficulty, by the leg. I will never know.

I was born in 1959 and my dislocated hip wasn't identified until 2 months before my 3rd birthday, I refused to walk, dragged my leg around etc. I was operated on in Manchester by the pioneering hip surgeon John Charnley. He used an advanced surgery ar the time but I was still in plaster and splints etc for a long time afterwards.

i was never sporty at school but how much is due to my hip problem, I will never know. I hated PE lessons. 

At the age of 11, I took part in a sponsored walk. I only did about 16 miles but after this, my hip used to ache particulary at night and my already apparent limp became much worse. 

Just recently I came across some of my late father's old cine camera footage which had a few shots of me in it aged about 15. I was shocked to see how badly I limped. 

At the age of 21, I was told I would need a total hip replacement. I was advised to wait as long as possible as they only lasted 10-15 years back then.

I struggled to the age of 40 when I was in so much agony, I had to give in. I was out shopping in Leeds and suddenly just couldn't bear to take another step . That is the moment I made and stuck to my decision. Whenever I felt close to bottling out of the surgery, I recalled this moment.

i had a total replacement at Wrightington in Wigan in Feb 1999. This is a specialist hip and knee replacement hospital. I was absolutely terrified and cried when my husband said 'Goodbye' and drove off leaving me there ready for surgery the next day. I

'm pleased to say the surgery was a success. At last I'm free of pain and can walk and walk! The surgery really transformed my life.

So far my replacement has held up well. I've looked after it in the sense that I don't go running or do step aerobics etc!

Recent x-rays have shown osteolysis. It is being monitored but so far, so good. Now that I'm 58, I'm thinking I should get away with just one revision op. Fingers crossed!

 Hope you recovered well Stella......and good luck to anyone else having surgery.

Velda Rhodes ❤️

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Hi Stella! I am new to this forum. I have had CDH diagnosed in the USA-way too late. I limped, had pain walking as a child. By the time I saw an Orthopedist-I had no left hip socket, and my femur bone was not in a socket. I spent 3 whole Months in the hospital. For 6 weeks-I had my left leg bandaged and there were 10 lb. weights-to help pull down my femur bone. Then surgery. I got along ok-rill I turned 25. Then I had a primary total hip replacement due to severe osteoarthritis. I gave a normal birth the following year to a beautiful daughter. ( she has no hip issues-smile,I have had 4 left hip revision surgeries since-I am in my early 60's and now am having pain and clicking in my left hip. This hip has lasted the longest- 14 1/2 years. I walk with a cane. I barely have any bone left-have a long metal rod that goes down my femur bone-almost to my knee! I sure hope some of this info is helpful! Today, as an infant-if caught before age 1- they use a Pavlik harness which keeps the babies hips in a frog leg position/ in this harness for about a year. The best part--you will eventually have normal hip sockets!! I wish you well Stella!! It is kind of nice to know that somebody else went through what I did. Take care-hope you don't live in chronic pain -like me. Kathy86629

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Hi Velda

CDH runs in my family four generations. My hip problems were not spotted until I was three . Had harness then plaster casts, then two operations, all done at booth hall Manchester . Unfortunately back then 1963 parents were given very little information, what surgery I actually had, by the time my parents THR ought to Tracy down threes early notes they had been destroyed. I went in to have three ostotomy operations at 16 /18 and 30 then at 38 had my first replacement. Although it was good I never had the strength to get off my walking crutch, fine inside but outside no balance. I have just had this hip revised I am three weeks post operation. It's going slowly but I am not worried just listening to my body, still taking strong medication and resting a lot. 

Trynot to worry about a revision as the outcomes are so good, I wish they had never tried to make me "normal" as really these operations destroyed my muscles, my hip and bottom is full of scars and my bottom is so flat I have a big dip in my thigh so can't build up muscle. 

Its great eat to read yours and Kathys posts, as I note the other posts are from some years ago. 

All the the very best Kay 

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Hi Kay

it is intersting to read your story.

I used to vaguely know a girl called Kay with the same CDH problem back in the 1960s. She used to visit my Mum's next door neighbour - an elderly lady called Lillian Hall on Broseley Road in Firswood Manchester. I wonder if this was you?

My leg is also badly scarred. New scars never seem to be made over old ones. I also have a hollow on my side. I never wear trousers or jeans as they twist round on my and highlight my hollow. 

Where did you go for your surgery? I'm guessing you'll be on crutches for around 6 months.

My friends joke that I'm bionic these days. I managed to break my shoulder in Russia last Summer and had surgery there where I collected a plate and pins in my shoukder. Not the holiday souvenir I was expecting.

3 weeks ago, I had a hammered toe straightened so have had it fused and have a pin hanging out of it for a further 3 weeks!

I'm just thankful that we live in a time when these procedures can be performed!

All the very best with your recovery.

Velda

 

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Hi Velda

I was born in 1960 we moved from Manachester when I was five . Will check with Mum re your Mums neighbour , my sister would have been with us as she has same condition and of course Mum does. 

I had had my THR at Robert Jones Agnes Hunt Hospital Gobowen , I have been lucky the same surgeon do both replacements. He also looked after our daughter. 

You sound unlucky having such a fall on holiday . 

I am am aiming to return to my part time job, but seem to be recovering slowly and because of strange sickness policies I dare not go back until I am almost sure I can manage. Bit frustrating that disability is treated as a sickness absence but that's my bug bare. 

Its a interesting forum everyone seems helpful. 

Take care Kay 

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Hi Stella, I've just come across your post and read with interest! I was born in 1978 and my dislocated hips weren't discovered until I was 2.5 years old after many doc visits (my mum knew there was something not right). I was in hospital for 3 months in traction, then in a frog cast for 6 months. Physio therapy and then yearly check ups followed. At 14, we were told there was no lasting damage. Fast forward 11 years and my first of two pregnancies, I was told I wouldn't be able for natural birth, was on crutches for last 3 months and wearing support belt as hips couldn't take the weight. I've had severe pain in my left hip for last 2 months and not relishing the thought of replacement as I'm only 39 at the moment, haven't been to doc as I'm the proverbial ostrich!!! What was your pain like before the replacement, not sure if this is power of suggestion or not. Thanks in advance for any advice xoxox