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anyone out there who has a fused hip (arthrodesis)?

Posted , 82 users are following.

debra57
debra57

Hi all am new to this site and am desperate to have communication with anyone who has had a similar operation. I had undiagnosed osteomyelitis as a baby and my hip was fused at about 1 years old. After spending nearly entire childhood on and off in hospital for long periods of time with full plaster casts up to underarms and frames, finally at the age of 12 last operation was done. I have just turned 52 and whilst up till the the last 3 years have managed pretty well. Married had 3 children and worked. Often got extra tired, but have always tried to keep up with others.

In the last 3 years things have been VERY difficult and scary. Endless tests,lack of understanding and neurological type problems, spine issues and still more tests and so far no resolution. I am pretty sure all the problems stem from having a long standing fused hip and it has taken it's toll on the rest of my body, especially spine.

I feel so alone with my problem because I have NEVER met or communicated with anyone who has a fused hip. I have gone on various sites, googled endlessly, but cannot find a single person who has same problem. It would be such a comfort to communicate with someone else with same situation or some support group. Even the medical professionals seem to lack understanding on fused hip and I feel like an alien because of this. So PLEASE, if you have a fused hip,especially one that has lasted this long I would love to here from you and hopefully we can change things for ourselves and others for the better.

8 likes, 234 replies

234 Replies

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  • danielhipfuse
    danielhipfuse debra57

    Posted

    Hello Debra, my name is Daniel i broke my hip when i was 14, the phemer head broke off. I had to go into emergency surgery, they pinned my hip right away. After waiying to see how it healed after almost a year the phemer head deteriorated almost half way from no blood supply. So they had no choice but to fuse my hip. I have 5 screws about 10 inches long in my left hip. Been this way for 20 years this year. I have lower back problems now as a result, pretty sever. Im gonna look into getting a hip replacement.
    • Anax2011
      Anax2011 danielhipfuse

      Posted

      Hi Daniel

      My left hip is fused from the age of 10. I am 35 now. I had unsuccessful surgeries to fix an infant hip displasia/ developmental hip displasia first by many casts and later by deepening hip socket age 2. Then the phemer was overgrowing and a surgeon thought it was cancer so shaved of a lot of the bone when I was 6. Eventually last surgery was to fuse two together without use of any pins. I was in various casts for nearly two years and then in full body braces for another year or so. I did learn to cycle in cast and braces, noone said I can't. Anyway I was then, before fusing, promised that once my bones stop growing I will have a hip replacement. I went to two specialists, one in Poland in 2001, one at UCLH in London 2013. Both said there is only small chance of success in my situation (5%) mainly to muscular structure, there is so much of calcification there is no such standard replacement so it will have to be individually designed with much limitation to movement. I was told that it is not to much 'meat' to hold the joint together and even with long phisio I wouldn't walk without aid of caine or more. So I decided to stay fused and look after my back as much as I can and have 'a normal life' though keeping up gets difficult every year. Hope the technology moves on to help us but for now I stopped looking. Good luck to you and please have a 2nd and 3rd opinion of a specialists before unpicking your hip. Regards. Pawel

    • danielhipfuse
      danielhipfuse Anax2011

      Posted

      Hey buddy, when they fused my hip i was yhe 8th case in the USA to be fused without a body cast or braces or anything. They had me out of my bed the next day using a walker, the physical therapy was hell but i jad to get it done. Had to learn how to walk again. Took 2 years from a walker to wheelchair to crutches and many therapys. Im just tired of the back pain and yes i hope the technological breakthroughs in this field has improved. Thanks for your feedback. One thing i did was overcome everything the doctor told me i could never do again except snowboard.
    • Anax2011
      Anax2011 danielhipfuse

      Posted

      I did try few times iceskating smile Back pain is a nuisance, I agree. I just can't imagine living without it.
    • danielhipfuse
      danielhipfuse Anax2011

      Posted

      Yea but its worse for me, i injured my back 8 years ago as a mechanic. My L2,3,4, and 5 discs are bulging. Its terrible right now i have no pain medication.
    • Skit90
      Skit90 danielhipfuse

      Posted

      Daniel did you end up doing a hip replacement? If so how did it go?

  • geoff91391
    geoff91391 debra57

    Posted

    I have just had  my arthrodesis taken down and a new hip ,after 40 years of problems related to the blockage. It was rather painful and my leg muscles are very weak, my docteur says it may take up to 2 years to get them active, in the meantime I am on crutches. Its great to be able to sit normaly, almost difficult to imagine! It was difficult to find a doctor that new how and was willing to do this operation and he said that due to muscle loss it was fairly risky. Any how I am 7 weeks post op with little pain and optimistic!  I would like to know if anyone has ideas about getting the muscles to work? 
    • Skit90
      Skit90 geoff91391

      Posted

      Geoff, how are you doing now? would love an update! was it worth it?

  • Milvain34
    Milvain34 debra57

    Posted

    Hello Debra57  I dislocated my hip at 12 and it was fused at 16.  Since then I worked, had children and lived.  It has caused me to have my left hip replaced and now my left knee and back are in trouble.

    I tried to have a hip replacement in 2008.  There were 7 surgeries due to dislocation, and infection, and the hip was fused again at the end of the year.  I am now having constant pain, and they have discovered that the fusion has cracked.  The doctor is saying he would try another replacement or put in plates and screws to hold the fusion.  I admit I am very scared and nervous.  I haven't decided what to do, but wanted to let you know what can happen.

    Don't take me as the guide to what can happen, just that I have had bad luck.  So think carefully.

    • geoff91391
      geoff91391 Milvain34

      Posted

      Sorry to hear about your bad luck, my athrodesis is part of history and I am 9 weeks into a new hip. Muscles are still very week and I need 2 sticks. I am not really sure how much exercise I should be doing, my doctor said take it easy. I will see him in5 weeks. For the moment no pain and glad to be able to sit up normaly!
    • novemberfive
      novemberfive Milvain34

      Posted

      Hi .. really sorry to hear of your misfortune. Your story really gets me worried.

       Having had my right hip fused 40 years ago I to have suffered with the back pain and everything else that comes with a fused hip. Having had my right knee re-surfaced less than a year ago, the variation that this has caused in my stance has set my back pain off with avengance. The surgeon who replaced my knee said that this may happen due the the altered gait and that this may lead me to a point wherby I will need to consider having my fused hip replaced. He also said that whoever fused my hip (Sir John Charnley in 1974) did a remarkable job in preserving the muscles and that it would give me a better chance of recovery if my fused hip were to be replaced (at the time my hip was fused with my own bone and not pins/screws).

      Reading recent stories on this forum makes me wonder if I really should take the risk in cosidering hip replacement now ... or should I stick with 'the devil I know'.

       

    • Milvain34
      Milvain34 novemberfive

      Posted

      Hello Novemberfive.  Don't take what happened to me as what will happen to you.  I have had bad luck but that doesn't mean you will.  I wish I knew myself what to do now.  Good luck and let me know how it turns out.
  • frank90190
    frank90190 debra57

    Posted

    Hi Debra,

    I know how scary it is when you feel alone and facing suregry. But know that there are many, right here with you. I am facing a fusion of my left hip joint due to unrelenting infection. I've had 5 surgeries and everytime the implant became infected within a few days.

    Today a new infectious disease Doctor told me about joint fusion. I'm excited for the first time in over 18 months. 

    Hang in there and post here and keep us updated on how you're doing.

    I'm adding you to my prayer list.

    God Bless,

    Frank

  • julie54729
    julie54729 debra57

    Posted

    HI Debra. I wonder if you've connected with my daughter on this website. She has had a fused him caused by a slipped capital femoral ephysis when she was 12. She's 28 now and needs surgery to replace her hip. Her back and knee are almost ruined because of this fusion. Her name is Jess. If you've talked to her ignore this. Or I can send you her email for direct contact.
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