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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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  • anthony20820
    anthony20820 debra57

    Posted

    Hi I'm 48

    And I have a fixed hip I smashed my left leg up in a horrific motorcycle accident when I was 16 and spent 6 months in hospital I never wanted s fixed hip but that was all that was available.

    That was 32 years ago I find myself very lucky I have spent 20 years plastering and have hobbies like jet sking as well.

    My only problem is I suffer Back pain and I have to take things easier now.

    I would love to have a hip replacement but I fear I'm opening a can of worms by undergoing that operation.

    Up till now I've led a full and active life

    Anthony

    • debra57
      debra57 anthony20820

      Posted

      Hi please read my posts and experiences of having hip fusion fusion for 52 and then having it unpicked. Hope that helps you. All the best and keep on being active, especially water sports.
  • ian28480
    ian28480 debra57

    Posted

    Hi, Do not despair, I am 70 years of age 52 year ago I had my hip fixed and fortunatley had no further pain or problems with a normal job and raising a family and pretty active DIY etc. and fortunately the only annoying problem was having to have one leg of 1 1/5 ins shorter than the other. About six years ago I started to have extreme back pain for four years I tried all the usual treatments pills and physio, and I was advised this was due to my fixed hip. So two years ago I sought out a surgeon who could help, I was very lucky I found a surgeon who said he would remove the pin and replace with a replacement hip joint, two years ago I had the operation and I now have no pain in my back, and now able to sit properly and my legs are the same length, presently the only drawback is that due to certain hip muscles having to be removed due to 40 years of wastage I have to walk with a stick but with no pain it was worth it
    • denise83853
      denise83853 ian28480

      Posted

      Hi Ian, You are the first person I have heard about who has had a successful replacement of a fused hip. I too had my hip fused 40 years ago and I have considerable back pain. I'd love to have the pin taken down but I have not received advise from a surgeon who feels very confident about a successful result. I don't want to be in more pain than I am in now! I wonder how I can discover the name of your surgeon?

      Denise

       

    • debra57
      debra57 ian28480

      Posted

      Hi, same as you, except had hip fused at 6 months old. Unpicked at 52 and now near 3 years and two operations later, NO movement of hip, back pain, muscle and nerve damage and bed ridden. Went horribly wrong, but pleased yours worked. Who was your surgeon, might want to see him please. All the best for 2016
    • debra57
      debra57

      Posted

      Hi, if you read above post, it can also go horrendously wrong, so pick a surgeon who has done it succesfully, like ian 2480. It depends how long your hip has been fused and whether you were an adult or a child. It seems the older and you were when hip was fused,(the more years it was fused, the less muscles are wasted) the better. Good luck and feel free to ask any questions. I truly wish I had not had mine unpicked, as I am now bedbound and in constant pain. but your situation might be more promising. Just do as much research as possible, which is of course what you're doing.All the very best to you xx
    • debra57
      debra57 ian28480

      Posted

      Please, please tell me who unpicked your hip so succesfully, because I am nearly bed bound after 2 ops over last 3 years after unsuccessful hip unpicking from fused hip since 6 months old (52 year hip fusion).Maybe your surgeon could help. VERY pleased yours worked, as I am sure you must be, what a relief and blessing
    • Lvinbr
      Lvinbr ian28480

      Posted

      Just wondering how you are doing with your hip replacement? I am considering a takedown and replacement. Thank you. 
  • novemberfive
    novemberfive debra57

    Edited

    Hi Debra .. I actually dont believe it. There was me thinking I was the only one on the planet who has had a 2 stage arthrodesis (1976). After a bad motorcycle accident I ended up with this hip that nobody today grasps or understands.

    When I say my hip is fused .. people say "Oh you've had your hip replaced" and go onto tell you about their auntie who has had her hip replaced " just like you".

     As everyone who has posted on this link knows, the vast majority of medical professionals dont understand the limitations and problems a fused hip gives.

    Earlier this year I had to have a partial knee replacent after having had 25+ years of pain. The senior physio told me that" I didn't understand and that there was a certain amount of movement in my fused hip and she would soon have me on the excersice bike" ! ( She had a group of 1st year physios with her). I then had to do a drawing explaining how any 2 items fixed together with 2 pins wont move ! 

    The knee replacement has been amazing .. I walked 2 miles 2 days after I had it done. Have'nt done that in 25 years. Being without the knawing pain is highly recommended.

    Forever I have had the what appear to be similar ailments suffered by most of you. Pain in the lower back, the good hip,the knee the  elbows etc .. as well as the shoe raise. Trying to sit where you are out of the way, so your leg sticking out, does'nt trip anyone up. Hitting your head on the car door frame because you dont bend. Tripping over nothing has been a favourite, not to mention shouting at your socks ... I'm sure we have all been there.

    Besides that I have been fairly active in the building industry, 30 years of windsurfing and currently have 2 allotments.

    Nearing 60 I feel that most of my joints have taken a beating  now and I have relished  the first long break since my accident in '74'. Having had a year off work I relly feel the benefit of not struggling to do tasks that are part of everyday working life.

    It seems so strange to have found this post as it appears there are others out there on parallel tracks to me, our paths have never crossed. But it is very comforting to suddenly realise that there is someone who actually understands.

    Perhaps we could have a reunion and we can all stick our legs out together !

     

    • debra57
      debra57 novemberfive

      Posted

      Ha ha better all the above than to have hip unpicked like I did and be bedridden in constant pain. You have the best approach and a good sense of humour to go with it. Please don't ever be tempted to get hip unpicked, it would not be worth it if your hip has been fused for a very long time
  • mandy43602
    mandy43602 debra57

    Posted

    Debra, 

    I had undiagnosed Avascular necrosis starting at the age of 12 which led me to have a right hip fusion at the age of 16. My body rejected the fusion: basically meaning that it causes me severe pain. 

    I'm 27 now and have had this fusion for almost 12 years and have hated it for 12 years. 

    But, I have come to terms with it. 

    I think the most frustrating part is doctors telling me that I need to work on range of motion exercises and that will help all of the pain. People always assume I have had a hip replacement and that I should be fine. They don't realize how detrimental it can be, especially to someone younger, to not have a mobile hip. 

    I saw a doctor in Maine who had a fused hip when she was younger, I think you can find her if you look her up. She's a sports therapist and I met with her when I had questions about my fusion. She is very good and is willing to answer questions about living with a fusion and what to do about complications. 

    • brandon_74075
      brandon_74075 mandy43602

      Posted

      Hey Mandy, I too had my hip fused at around age 13. I'm now 27 and really physically active. Swimming, boxing, weights lifting.

      As of lately I've been experiencing some low back pain.

      I wanted to know if there was anything in particular that you do to ease the back pain, stretch or anything of that nature??

      Thanks

    • mandy43602
      mandy43602 brandon_74075

      Posted

      Brandon, 

      I find that it helps a lot if I lay flat on my back on the floor (hip at the nescessary angle forward) and just breathe and let it all go back into place.

      One exercise the doctors at Boston Childrens gave me was to lay on my back and try to make my belly button touch my spine. Just suck it in very slowly, stretching all of those muscles. It sounds silly, but it helps. 

      I also lay on my back and stomach on a yoga ball to stretch out those muscles. 

      I'd totally recommend doing crunches or any type of abdomen/back strengthening exercises as it directly effects your hip. 

      I have been experimenting for years with exercises to do and have found that it depends on the amount of pain you are in that day. But just try. 

  • carole1234
    carole1234 debra57

    Posted

    Hi Debra,

    I too thought I was the only person with a fused hip from infancy!!!! I'm 55 and have worked my entire life. I have 2 children also. I pretty much have always done whatever everyone else has done, just modifiying it my abilities. 

    I was born with no left hip socket, and a mishaped femoral head/neck. Head was oblong and neck was squat/short.  They found it when I was 6 months old noticed the left leg was not moving as much and was longer in length. Anyway, I had 3 bone graft surgeries from 9 months to 15 months that fused the femur head to the illieum (Pelvic bone). Still works great as I've adapted my entire life, I don't nything else.\

    My problem is that the left hip was fused in such a way that it put a terrible twist on my left knee. The ACL just stretched out like spaghetti strings, knee is not longer straight or stable. Surgeon won't touch it d/t my supposed Ehlers-Danlos syndrome. (Loose stretchy connective tissue, an autosomal dominant collagenase disorder). 

    How I cope & stay in shape is by lap swimming, non weight bearing, so no stress on hip or knee if I don't use swim fins. Great core muscle workout! I'm just not a quitter. I find some way to do what needs done at work & at home. Stay positive, find something to smile about everyday, even if it's just watching the antics of hummingbirds, ect.. that smile gives us a dose of oxytocin, which makes us feel better. Hugs and massages also release tons of oxytocin too.

     

  • francis39984
    francis39984 debra57

    Posted

    Hello Debra sorry for bad grammer in advance but i too have a fused hip.

    My name is Francis i am 55yrs old and since i was 17 while serving an apprenticeship as a joiner i contracted blood poisoning which settled on my right hip after nearly 4 weeks in traction which did not work i was put into toe to chest plaster cast for roughly 6mths.Until i was about thirty i just got on with it but since then until now i have chronic back pain which affects me when walking,standing and even sitting.

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