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Cdh treated as a child, now thr needed? Anyone else?

Posted , 6 users are following.

caza92512
caza92512

hi, I'm new to this forum but looking to see if anyone else has similar circumstances. 

I was born with cdh and it was repaired when I was 6. It's has served me well and been completely fine and pain free until the last year or two. This year it's becoming very painful almost all of the time and my movement is becoming much more restricted.

I'm at the stage where I'm considering contacting my gp to see what options are available to me as it wouldn't just be a straightforward case as with OA. just wondered if anyone else had experience of this?

0 likes, 11 replies

11 Replies

  • auntiebeanie
    auntiebeanie caza92512

    Posted

    Don't know abt CDH but my cousin had Perthes Diesease and ended up having a hip replacement at age 40. From what I remember he was in hospital for a couple of weeks but has not had many problems as far as I know. Xx

  • fiona1707
    fiona1707 caza92512

    Posted

    Cdh means chronic diaphragmatic hernia ? Do u mean hip dysplasia .. I had that also and have had left hip replaced 3 weeks ago .. best thing u can have done pain gone and can walk again without limp and pain ..
    • caza92512
      caza92512 fiona1707

      Posted

      Cdh is the newer term for child hip dysplasia. I don't know why they reversed the d and h either! 

      I know you can get hip dysplasia as an adult but I'm specifically afte anyone who had surgery on it as a child. Can't find anyone like me but I'm not that unique, surely!!

  • sarah1996
    sarah1996 caza92512

    Posted

    Yeah i had congenital hip dysplasia if thats what you mean?
    • caza92512
      caza92512 sarah1996

      Posted

      Yes Sarah, did you have it operated on as a kid? How old are you now and what is ur condition now?
    • sarah1996
      sarah1996 caza92512

      Posted

      Ahh theres various types of dysplasia haha. Im 20 years old, i was in traction for a long time and iv gone on to have 13 operations since the age of 1 year old. My condition was and still is horrendous. My life is extremely limited and full of pain everyday. it has not been a very fun or happy existence unfortanelty. Xx
    • caza92512
      caza92512 sarah1996

      Posted

      Gee. I'll quit complaining about my sore hip then! Poor you. I must admit, I have been very fortunate and I've had very few problems with mine, despite years of competitive, high impact sports abuse! I had my hip corrected when I was 6, in an op I forget the name of but involves reshaping the socket and an osteotomy of the femur. I will probably need a thr at some point but this won't be straightforward and I don't know if there are other options to try first as my joint will be very unique to my dysplasia and repair.... Just looking for info before I head to the gp! 

      Wishing you all the best with your

    • sarah1996
      sarah1996 caza92512

      Posted

      Dysplasia comes in many forms. Mine just happened to be very severe. Im currently about 19 weeks post op thr, because i didnt have a joint or socket my surgery took 7 hours and the hospital even had to order in specialist equipment. Thag intreguies me haha. So far i am having no good effects from my thr but i know so many who have made such amazing recoveries. Your body will tell you when its ready for the thr. Hang in there hun. Do you think you will get it done soon?
    • caza92512
      caza92512 sarah1996

      Posted

       Have no idea! I have two young children and a gardening business so I'm not sure what to do! From what I'm reading, there seems to be little option apart from thr in people with hips like ours! I'm not sure how I'll cope with the time out but similarly I think it's better to get it done sooner rather than later? Also sh*t scared... Having spent so long in hospital as a kid although I'm not terrified of them, the thought of staying in one for a week and the op scares the willies out of me!

      i don't take any medication yet as its not something I'm keen on but don't know if the gp would do that first and wait until it's much worse. I'm in the same pain now as every night for as long as I can remember now so I'm going to have to bite the bullet sooner or later!

    • sarah1996
      sarah1996 caza92512

      Posted

      When i had my op I was only in for 2 nights, mad really but i was happy to be out as my experiance was horrific. Well my opinion on having it younger seems worse tbh, what happens in 20 years and it needs redoing but there isnt enough bone left to redo it, that is one of the complixation with mine, once its gone it may well be gone for good.

      What is your quality of life like currently? Are you still active? High pain levels on daily basis ect? Is it severely limiting your life currently?

  • linda81469
    linda81469 caza92512

    Posted

    I was born with hip dysplasia. What my mom told me was that I was put in a body cast from neck to to feet for 6 months when first born then from waist to feet for another 6 mons. There was a rod that kept legs apart. Hip had been dislocated at birth so I guess this was a way to fix it. No surgery tho. Then at age 12 they put 24 staples in left knee to stop growth so right leg could catch up. Had always been short but managed all those years till the last 2 when pain & lack of movement became a problem. Had trhr in July. But dislocated after 3 weeks! Surgeon was going to try and get it back in without opening me up again but couldn't. After going in again he saw not only dislocated hip but cup was lose and had to do revision of total hip. Now am non weight bearing for 6 weeks. Hope all goes well for you. Prayers for a successful surgery and complete healing. 🤗 Hugs, LD

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