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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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  • denise83853
    denise83853 debra57

    Posted

    Hi Deborah

    I am sorry to hear that you are still having pain. I know it can be a very long recovery process. I have had a fusion for 40 years and I am still looking for a surgeon confident enough to replace my pin.

    Denise

    • debra57
      debra57 denise83853

      Posted

      Don't do it!!! Am in constant pain and now bedridden at 54. My hip was fused as a baby and the longer the fusion, the less chance of success. I would not put my worst enemy through the physical and mental torture and disappointment. PLEASE ask any questions, happy to stop you making the worst decision you could ever make. Not being negative, just trying to save you
    • debra57
      debra57 denise83853

      Posted

      Thanks for your message. Not,only is there no recovery, but it is getting worse after 2 failed surgeries

      and 2 years of agonising,physio and attempts to walk, now in constant pain, bed ridden and less mobility in hip now than when it was fused.Uicking a longstanding hip fusion is NOT a good idea and not worth the risk.This unpicking was done by a top orthopaedic hospital and still went wrong

  • denise83853
    denise83853 debra57

    Posted

    Hi Debra57

    Doing adequate research is very difficult. I am in Perth Western Australia. I've been to a few surgeons here but it is difficult to find anyone who has done the operation very often. I'm trying to find a surgeon who has plenty of experience. I presume surgeons in the US may have more experience but finding them is the problem.

    Denise

  • debra57
    debra57

    Posted

    A lady called Edith Crowther, search Internet for her story. She lived in America and went to a surgeon in would you believe it, Australia!!!He succesfully unpicked her hip.

    Read her story and the name of the surgeon is mentioned. Perhaps if you can afford it he may help you. Let me know if you find her story and the surgeon's name. If not, I will try and find it.

    Best wishes

    • denise83853
      denise83853 debra57

      Posted

      Thanks, Debra. I found her story and the surgeon's name is Len Walter. I I may make a trip to Sydney! 
    • debra57
      debra57 denise83853

      Posted

      I contacted by email and he actually answered me which is unusual for a consultant. He gave me a list of specialists in UK he thought could succesfully unpick hip, but I chose the wrong one sadly and it was a disaster. Maybe and hopefully you will have better luck. If you can afford to see Let Walter in Australia, I would go for it, because Edith Crowther's success with him is what inspired me. Please keep me posted and best of luck. xxx
  • JessBC
    JessBC debra57

    Posted

    Hello all,

    I have had my right hip fused since 2001. In the summer of 1999 I was growing too fast, jumped off my dock at the cottage and the growth plate in my right hip slipped (slipped capital femoral epiphysis). The doctors pinned the growth plate back into place, but then the cartilage eroded completely. Bones were shiny from rubbing together. I was only 13 then, too young for a hip replacement, so they fused it. Now 15 years later, I have arthritis in my lower back and have chronic back pain. I am facing the possibility of a total hip replacement. Meeting with an orthopedic surgeon on Monday. I am terrified. Just wanted to tell my story thus far. Good to know I am not alone.

    • danielhipfuse
      danielhipfuse JessBC

      Posted

      Hey Jess ive been wanting a hip replacement but i was to young and they didnt have new technology they have today. Whos your doctor thats gonna do you hip replacement. I broke my hip when i was 14, almost same exact thing as you but i flew down my stairs off crutches. The phemer hesd broke off and it died from.loss of blood. They fused my hip at 15 and now 20 years later i also have bad lower back pain and I just cant stand it anymore. I still work and can work i refuse to be a lazy bum but my backpain is terrible. No one knows how our back hurts but us.
    • JessBC
      JessBC danielhipfuse

      Posted

      The back pain is terrible! I work full time as a cook, as my mother says, a terrible job for someone like me. I have been learning a lot about ways to calm the nervous system, like colouring, yoga, meditation, breathing techniques, to help relieve pain. I don't take pain meds except a lot of ibuprofen. I am in Victoria Canada. The doc is Dr Jacks. He said he has done it before in Vancouver and he gave me the impression it can be done, but I may be looking at more hip replacements in the future as they last 15-30 years. Even if I don't get it done now, the stress on my back and knees will lead to future surgeries anyways. So there is hope! Along with a lot of hard work.
    • Anax2011
      Anax2011 JessBC

      Posted

      Hi Jess

      Have you seen anybody else who sucessfuly unpicked a fused hip?

       

    • JessBC
      JessBC Anax2011

      Posted

      No, this is only the second doctor I have seen about it. The first one retired immediately after I saw him. Lol, it was not related. But he hadn't done it before.
    • danielhipfuse
      danielhipfuse JessBC

      Posted

      Im a cook too, crazy huh but i was a mechanic and hurt my lower back 8 years ago. My L2,3,4 and 5 discs are bulged so im worse off. And its the lower back for is that has arthritis as we get older. The doctor that fused my hip is retired, Dr William Bunnell i wish he was still operating. Id loke to have my entire body evaluated and see how it has changed over 20 years. The left side of my fave seems to be a little lower then the right so id like to see what else isnt right internally or what has changed. But im definitely gonna look into having a hip replacement. Loma Linda is one of top 3 hospitals in the united states. Thats where i had my surgery done
    • julie54729
      julie54729 JessBC

      Posted

      HI Jess! It's your mom! Found this story and put your name out there. You may here from a woman named Debra.

      mom ontario

    • Jeff45023
      Jeff45023 JessBC

      Posted

      Hi Jess,

      Thank you for sharing your story.  Are there any updates you can share?  It looks like it's been about 10 months since most posts on here.  I'm 40, have had hip fusion for 20 years.  Had a slipped epiphysis at age 16, hip flattened out, had a hip fusion at age 20.  Going to see a surgeon at rush hospital in Chicago on 12/5/2016.  I've seen 2 different ortho surgeons in the past 5 years, but both encouraged me to continue on with the fusion until one day the pain becomes unbearable.  It's not unbearable, if this was as worse as it gets, I could continue on like this.  But I'm afraid the pain and mobility will only continue to get worse with the fusion (It's gotten progressively worse over the last 3 to 5 years).  The first 15 years were actually pretty good with the fusion, but not so much lately.  I am just hoping to hear more from people that may have had similar circumstances and actually went through with a hip fusion takedown to full hip replacement.   Thanks! 

    • fawncy_94207
      fawncy_94207 Jeff45023

      Posted

      Curious if you have had any replies.

      My story Is similar. Dislocated and fractured hip at 13; pinning failed and my hip was fused at 14. My doctor said to have my hip replaced after I was 25, since I'd likely need more then one in my lifetime. Well I'm 40 And experiencing lots of side effects related to having my hip fused for 26 years. I wish i would have had it done before the pain got worse. I not only have arthritis in my good hip and spine I also have decreased feeling in my lower extremities related to narrowing in L3-4.

      I find out Monday if my MRI results show whether im a candidate for a take down with hip replacement.

      I'm happy and scared to have found this site. I'm not sure If i should have the surgery or deal with the pain......

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