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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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  • Gillian1986
    Gillian1986 debra57

    Posted

    Hi Debra.We are in the UK...Hope it's ok to post on behalf of my hubby...He is aware but in bed at the moment in constant pain, etc...He had an athrodesis of the left hip in 2001 at age 21....Only took the  proffessionals 14yrs to diagnose a problem with the hip....and even then it was a private oesteopath that picked it up...Just at a loss as to what to do, and if I sound desperate, it's because I am..Apart from his constant pain....I was wondering if anyone else has uncontrollable shaking of the leg.. Also...he has no sensation anywhere in his hip area and I don't think much muscle as it looks as a chunk has been bitten off...does anyone else look like this or have total numbness?? Am I even making sense? If so have you gone for a hip replacement ...
  • dorby54
    dorby54 debra57

    Posted

    Hi Debra.  I had my right hip fused after an experimental artificial hip replacement became infected just over 30 years ago.   In 1996, I fell off a ladder and broke my right leg, which meant having to reconfigure the fusion.  The (re) fusion has been better as far as walking and sitting goes. However, the bouts of regular back pain started about 12 years ago with severe pain every couple of weeks making it difficult to walk.  So, I was on crutches or two canes to get into work.  At that time I was married, lived in a house with lots of stairs, and worked at a place that required lots of stairs - also - an avid gardener.  I had one excellent physiotherapist who advised me to: avoid stairs when I could; give up gardening (on my knees and in the dirt); do tasks standing up.  I didn't listen to her 'cause I didn't want to give up being "normal".  After too many painful episodes, I decided to relent.  I moved into an apartment with an elevator. My floors are cushioned with thick carpet; I work mostly from home; avoid going up stairs where I can and take the elevator - and I garden standing up. (on my balcony) Except for one day, I have not had any back or leg pain in 2 years.  
    • Milvain34
      Milvain34 dorby54

      Posted

      Hi dorby54.  When you say you had a (re)fusion of your hip and it made walking and sitting better, I am wondering what you mean.  Did they put it at a different angle?  I am wondering because I had a failed hip replacement and where it is supposed to be fused, it is cracked.  They are talking about redoing the THR or putting in plates and screws to secure the area.  I had 7 operations on my hip in 2008 and must say I worry greatly about doing anything again.  I am not sure the muscles around my hip and bum could support any other surgery.  Please let me know what they did for you.

      Thanks

    • dorby54
      dorby54 Milvain34

      Posted

      Hello.  When my hip was fused I was in a body cast for 4 months.  My leg was fused in a position so that my 2 legs could not touch naturally. If I lay on my side, my fused leg was straight out in the air fully supported by screws.  Sitting in regular chairs was difficult and my leg "fell asleep" regularly - especially bad in restaurants.  After I broke my leg, they inverted the leg on a very slight angle; but enough that sitting in a chair was more comfortable; my legs could be together; AND, the also but a bolt through my knee so there has been no discomfort there.  The best chair for me to sit on is a shallow one, with no cross-bars so I can sit at the edge and tuck my fused leg underneath.  Every other way has its challenges. 
    • dorby54
      dorby54

      Posted

      As far as having more surgery, it is always a concern.  The more surgeries you have and the older you get, the more risk you have.   I've decided to stick with what I have for now.    I did meet someone last year who had a natural hip fusion from the age of 9.  At age 50, she decided to unfuse it and replace it with an artificial hip.   She is doing very well.  
    • Anax2011
      Anax2011 dorby54

      Posted

      It is a tough one. My leg is getting numb when sitting on hard chairs and a toilet rolleyes (sorry). I am sort of glad seeing more and more people coming out and saying they have a fussed hip, I felt so alone couple years ago, Still on daily basis not to many people undersand what we have to deal with. Many thanks everyone and thanks Debie for the post.
    • danielhipfuse
      danielhipfuse Anax2011

      Posted

      I have the same problem wuth numbness in my leg, especially sitting in on stools i go numb from my groin all the way down. I broke my hip when i was 14 and they fused it when i was 15. Im.gonna 35 at the end of july. I live in California
    • dorby54
      dorby54 Anax2011

      Posted

      Well, not to be indelicate here, but I learned how to use the toilet standing up, and while I don't do it all the time - after a quick assessment of a facility, I decide what I'm going to do.    
    • dorby54
      dorby54 danielhipfuse

      Posted

      I rarely get numbness in my leg anymore, except if I'm sitting on a hard wooden chair with a raised edge.   I just get up after 30 minutes, and spend 5 minutes walking around in the washroom.  It is never easy - especially if you're out with friends - 'cause the pain and the numbness consume my time.  It takes at least 5 minutes for the numbness to disappear after I stand up - and I feel comfortable walking again. 

       

    • Milvain34
      Milvain34 dorby54

      Posted

      I admit that before I found this forum, I thought I was the only one with a fused hip.  I feel better for knowing that I'm not, but I certainly wouldn't wish it on anyone.  My fusion was done when I was 16, so I have lived a long time with it.  I find that since the surgery in 2008 things are harder. I really appreciate the views of everyone on the forum.  I am 64 now and have no idea which would be the best idea for me.  I do remember being in a body cast for 6 months when it was fused.  I will keep reading and hoping and praying for everyone here.  Thanks to all.
    • danielhipfuse
      danielhipfuse dorby54

      Posted

      I sit the same way, leg tucked under to lean forward. Its hard to eat in a booth at restaurants as well. Most of the time i request a table to sit at rather then a booth.
  • hb33509
    hb33509 debra57

    Posted

    Hi Debra. I just saw your post. My partner had a suspected dislocation of the hip for about 3 months when he was 15. His mum took him to a few GPs but no one did an xray. Then after the 3 months his hip broke because the femoral head had died from lack of blood supply. Pinned at first, it was fused at 18. He has about an inch & a half difference in leg lengths, scoliosis, costochondritis (sorry if my spelling is wrong), arthritis in his 'good' hip & sciatica. He's in intense pain every day & takes up to an hour each morning to get his body working enough for him to walk around. He's 35 now & really struggling but he's been told he can't have a replacement until he's at least 50 & they're not sure it'll be successful. He hates the feeling of being on morphein so refuses to take the strong pain medication he's prescribed. It's very sad to see the impact the chronic pain has had on his personality, especially with two young children. I give him massages most nights so he can sleep and function the next day. He's an amazingly generous & honest person; it's such a cruel situation.

    • Anax2011
      Anax2011 hb33509

      Posted

      Hi HB33509. I have fused left hip since I was 10/11, now I am 35. I was once told I can't have a hip replacement till I am 21 then when I was 21 I was told that there is a small chance that the opperation will be successful. I had my second oppinion in 2013 and the result was the same. It looks like there is no solution at the moment. It will be nice to get in touch. Regards

    • hb33509
      hb33509 Anax2011

      Posted

      Hi Anax2011. I can only imagine the disappointment you've felt with those opinions. When I went with my partner to a specialist a few years ago he was told that he first needs the pins out from the fusion. They've been in so long that the tissue has grown around them and the extraction will be difficult. Then, after he's 50 they could attempt a hip replacement but there are no guarantees of success of course. 3 specialists would be present. He's lost so much muscle mass in his thigh that he'll also need extensive rehab. Over the last year his condition has really worsened and the pain is unbearable at times. He's commented at times about not wanting to live. So, regardless of the opinion a few years ago, he's on the waiting list to see if he can have the surgeries earlier. He's having good days atm but generally quality of life is crap so it's worth another shot.

  • landslide19
    landslide19 debra57

    Posted

    I'm new here to this website,  Tomorrow I'm going to a surgeon to discuss either a hip replacement or hit fusion and I really know nothing about a hip Susan

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