Help Please! Hip dysplasia 32 year old

Posted , 8 users are following.

I’m writing on behalf of my wife,  aged 32. BMI 21.5.

12 months ago she was as fit as a fiddle.  Lots of exercise. Started to get pain in the groin. To cut a long story short,  now she can hardly walk 100 metres and only at the pace of a 3-year-old. She has been diagnosed with congenital (partial) hip dysplasia and given physiotherapy, which made it much much worse.

She saw a specialist 6 months ago who assured her *definitely* it would not get worse for years (I was there too). He was clearly wrong. It was him that recommended physio.

Now GP referred her to a hip surgeon. 

Any advice or information greatly appreciated.  My wife is not against surgery if it will make it better with low risk (we have a young child). Frankly, the way it’s going in another few months she will be in a wheelchair.

Thank you.

2 likes, 13 replies

13 Replies

  • Posted

    So sorry for her paiin. Suggest getting a second opinion if surgery is recommended. 

    Because of a second opinion I had hip surgery instead of back surgery. Grateful I did not go ahead with first surgery as that would not have stopped the horrid pain I was having. 

  • Posted

    Physical therapy very rarely helps when there is a big congenital problem.  But something must have happened recently to make things get so bad so quickly.  Find another specialist and definitely get her to a surgeon as soon as possible.  Does she have any x-rays from the specialist?  Did the GP put her on any muscle relaxers or anti-inflammatory medication?  Did the GP take any x-rays?  Are her legs the same length? 

    I too, have/had congenital hip dysplasia.  There was no socket and the ball was malformed.  It was operated on when I was not quite 5 years old.  This resulted in the one leg being shorter than the other.  Physical therapy and shoe lifts only made the situation worse.  The only thing that helped were pain killers and some gentle stretches.  Gradually the cartilage wore out and I had bone on bone grinding.  In a years time I went from being very active to barely able to move and sleeping only when totally exhausted.

    So back in December I had the replacement.  Have not had pain in the hip or my lower back since.  My legs are now even but I had to learn to walk all over again.  I am still not even as mobile as I was in November but it keeps gradually improving. 

    I don't know where you are located but do a lot of research on your surgeon and ask many many questions.  Write them down if you have to because you will forget them while in the office.

    I wish your wife luck.  I know how she feels.  Letting things go is scary.  The surgery is scary.  Having to do this with a small child to care for is even worse.

  • Posted

    I was told I would be in a wheelchair in six months. It was actually eight months, but once you start to have problems you can go down hill quite fast. Having a new hip is life changing. Choose a surgeon who has had lots of experience and your wife should be fine.
    • Posted

      Thanks for your advice. Yes, the deterioration in the last 4 months has been extraordinary and the last 2 weeks even faster. She could walk a couple of miles in December. Today she can’t walk around a supermarket.
  • Posted

    So sorry to hear this. I don't have hip dysplasia and I'm not a medical professional. I just feel for your situation so I hope you don't mind my weighing in.  What I have gleaned over the years about hip dysplasia treatments is that it depends on the extent of the hip damage. I hope you can get more than one opinion, after x-rays and/or MRI. If the damage in an adult isn't extreme, the surgeon can do something called a Periacetabular Osteotomy where the socket is cut and repositioned to match up better with the ball. If however, the hip is severely damaged by the dysplasia, a THR is often recommended. A good surgeon will know which surgery your wife needs. (Oh and I have heard that groin pain is common with dysplasia.) Like I said, I am clearly NOT a medical professional but if I was only 32, I would want to have the appropriate tests done ASAP,  to know the extent of the damage from an experienced surgeon and which surgery I need.  The good news is that hip dysplasia IS a condition they can do something about, whether it's repairing the ball and socket or replacing the hip. It's a shame to have this so young, but on the other hand, young people who are fit and healthy like your wife heal faster than we older folks. My best wishes to you both. You'll get through this. Please take care in the meantime.

    • Posted

      Thank you for your advice. What you are saying is concordant with the advice that she has received from now, from 4 consultant surgeons elsewhere in the world. What has happened though is that a moderate situation has gone to severe almost overnight - she was walking a couple of miles a day quite happily as late as December, in January it started to hurt almost constantly instead of intermittently and now she can hardly walk around a supermarket. I am aware of the Periacetabular Osteotomy - and what really upsets me is that in September when we saw a specialist here he assured us that the hip would not deteriorate "for years" and that operation would be an option then. Thank you for your advice.   

  • Posted

    One thing I know from life experience is that no specialist can accurately predict when a congenital hip condition will go downhill rapidly.  I had annual x-rays for years.  Everything looked pretty stable for decades.  All looked good even in 2016.   One year later and there was no longer any choice about waiting another year.  Why the sudden degradation?  Who knows. It had finally reached the point where a replacement could no longer be postponed.  Even so, I pushed through the pain for a few more months. 

    Truthfully, if I had known there were replacements that would last 20+ years, 10 years ago, I would have had it done then.  I had better insurance back then too.

    • Posted

      Your comment about “I had better insurance back then too”, I’d a sad reflection on the USA is it not? The only first world country without universal health care.
  • Posted

    To be fair, I didn't have to wait to see a specialist and was able to have the surgery scheduled close to when I wanted it.  And I was able to see the surgeon of my choice.  I'm not sure if health care is rationed in some countries but have heard that is was.

    The insurance company tried to postpone the surgery. They kept requesting more information and they have 10 days from the time they receive the information before they have to make a decision as to if they approve the surgery.  We got approval from the insurance company for the surgery while I was in surgery! 

    • Posted

      In UK elective surgery such as hips and knees is becoming more difficult to get. There are rumours that if you are obese or smoke you could wait virtually forever. I had to apply for funding from our local clinical care group which takes a while as they have meetings every so often to decide who has surgery and who doesn't. On the plus side it is free. If you are turned down you can always pay for it privately, but it is quite pricey.  

  • Posted

    I would look into hip resurfacing. If she is suitable it could be better than a replacement as it usually lasts a lifetime, whereas a hip replacement can wear out after 15 years, especially if you are young and active.

    I had a resurfacing on my right hip 10 years ago. I could barely walk but they Didn’t want to give me a replacement as I wasn’t quite 60 and might need it redoing. I went to Belgium for mine as I was living abroad at the time but they do it in the U.K.

    I’ve just had my left hip replaced. Now I’m older they were willing to do it. Both tines I feel the operation gave me my life back.

    There are pros and cons to resurfacing so you need to investigate it thoroughly. The thing that is absolutely key is to find a surgeon who performs a lot of resurfacinga with a high success rate. It’s a more complex operation than a replacement.

    Best of luck to your wife. 

  • Posted

    Oh my prayers are with you and your young family.  I just had my hip revised after only 8 months it came loose. My bills are at $350,000 as of today's mail so I am thankful for company insurance. She sounds like a remarkable woman, wife and mom.  It'll all work out. NO RACQUETBALL!  Keep her spirits up.  We'll all read worse accounts.  That actually inspires me when I am down and sad although I am sad for others more so than my self.. 

    • Posted

      Thanks.

      As for the bill, why not move to a first world country with proper healthcare systems? I have no idea how they managed to pump up the bill to 350,000?  Privately in Europe it costs $20-30,000.

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