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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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  • cece12019
    cece12019 debra57

    Posted

    I was hit by a car when I was pre-pubescent aged 12. I am 61 now, and had my left hip fused since I was 13 yrs. old after necrosis. I have had knee arthroscopies for torn meniscus from L hip rotation and arthritis in my late 40's, chronic R hip Bursitis since I was 50, and most recently lumbar spine DDD / scoliosis and arthritis, and a R foot neuroma that no one will operate on. The L hip fusion contributed to all these problems. However, my L hip no longer has pain and, I consider myself "healthy". I discovered water aerobics, swimming and water therapy with occassional massages about 8 years ago to be the most benificial pain control. Medications never worked and exercise does! Exercise also keeps my balance and mobility better than most expect. I wear a 3 inch lift on my L shoe and that has helped my R hip pain somewhat, and absolutely helped my back pain. But can cause falls... ( I found out I developed Osteoporosis in the L hip and L pelvis and my L leg became 3 inches shorter than it was!). 

    Distance walking is still not desireable to me, but not impossible. I work in the medical profession and remain active.

     

  • flakay
    flakay debra57

    Posted

    I had no idea that so many people have had this problem.  When I was about 5 they discovered I had TB (disintegration) of the right hip. My mother found a doctor who would do surgery on me and a full  fusion of the hip. At the time I was told that this was experimental and had any visiting doctor inspect me and how I walked but you become used to that.  I always said that youth is resilient.  Anyhow... my hip was fused and I spent 16-18 months confided to a children's hospital in a full body cast.  I had a special cart made where I would brace myself up to do things on my stomach.  At 13? I had a block done on my left knee to slow down the growth.  I ended up with about a 3/4" difference in leg length, after an accident it is now 2 1/4th inch difference.    As with many of you.........  I never considered myself handicapped and even did things like riding horseback.  Needless to say.... my doctor would have had a stroke if he had known that I did that.  I was always warned not to fall because if the fusion was ever broken it could never be repaired.  Over the years I did well with it but did normally had minor low back pain.  I probably did everything that I shouldn't have done as I did wear high heals most of the time.  I went though a period where I had several falls, and two minor car accidents that probably wouldn't have been a problem for anyone else but my body doesn't bend the way it was made to.  Since then I am having much more pain.  One result of the fused hip though is it that the fused hip does put more use onto other parts of the body.  I have trouble with both of my knees and find that most all of my weight is now carried by my left leg. I also have trouble with my feet and back.  At this point a lot of the problem is long hard use as I am 70 years old.  It is somewhat of a round Robin effect.  The hip does effect the back though.  At one point I had a doctor tell me........  "well didn't they tell you that it (the spine) would eventually disintegrate?".................  NO!  Now I find that I have a lot of pain but it is hard at this point to tell which the culprit is.  I have had people mention that I should look into having a hip replacement.........  however that is before they really look into what has been done.  There is nothing to replace as I have a mass for a hip........no joints to replace.  Plus the muscles are very weak from lack of use.  So at this point...........  any doctor who thinks it should be done................  needs to go back to school.  It has been interesting to read of how others have coped.  I do agree that water therapy is one of the very best things that you can do.  I wish each of you good luck and stay positive as it does help.
    • cece12019
      cece12019 flakay

      Posted

      Yes, I no longer have a gluteas mediusmuscle or nerves on the left. I have been told if I had a hip replacement it would be flacid. Which would make me non-ambulatory.
    • Paulman
      Paulman flakay

      Posted

      After 38 years im having it done friday
    • Paulman
      Paulman

      Posted

      A fusion take down and a hip installed .. Guess we will see...
    • fawncy_94207
      fawncy_94207 Paulman

      Posted

      I hope surgery went well for you.

      I find out Monday if I am able to have the fusion taken down and replaced.

      My hip has been fused for 26 years and I'm curious to know how the recovery process will play out.

    • christine24271
      christine24271 Paulman

      Posted

      I do hope your op was successful and you are recovering well. I am still undecided . Can I put up with the ghastly back pain?  but at least  can still walk around with a walker I am very active for a 75 yr old I look after my 2 yr old great granddaughter and walk my dog each day and I can drive and do some beloved gardening, so really I am very happy apart from back pain and progressively not being able to stand up straight. See I am talking myself out of it! I do hope yours is good. 
    • christine24271
      christine24271 flakay

      Posted

      Thankyou for posting. my situation sounds exactly like yours. it is very comforting to know there are others like me. I always was told it was experimental and I'd probably be in a wheelchair by 40. But at 13 you don't believe them and I always pushed myself to the physical limits! I have reached 75 and still fairly active but in dire back pain. I can't decide whether to chance this op as it is the first time any surgeon has agreed to do it. All the others said "no way" .

    • Lvinbr
      Lvinbr fawncy_94207

      Posted

      Just wondering whether you will have a hip replacement. 
    • Skit90
      Skit90 Paulman

      Posted

      how did it go?? update?? please and thank you!

  • Lvinbr
    Lvinbr debra57

    Posted

    I am nearly 52 years old. My hip has been fused since I was about 5. I had a revision on it when I was 15 because of growth issues. Lower back pain (probably SI joint) is my biggest problem. I have a knowledgeable physical therapist who is helping me. Doctors do not want to touch me. They will not even discuss hip replacement because I a too young and active. I have heard this my entire adult life. My knees and neck (from a head thrust that counter balances my hip) have also taken a beating. Staying active is the best thing for me. I do not horseback ride or ski anymore as I did in my youth but I do walk regularly. Itis nice to know there are others out there like me. 

     

    • cece12019
      cece12019 Lvinbr

      Posted

      I agree it is nice to know so many of us have fused hips! I always feel like I am the only one in Upstate NY. I had the same revision when I was 17! Spica cast for 4 months then too! Be careful with anyone who says do a hip replacement. Insist on an EMG test first. Because, atrophy or muscle and nerve loss of hip muscles on the fused hip are common. If you don't have muscle or nerve to support the bending hip, you will be in a wheelchair with a "flacid" hip.
  • linda62396
    linda62396 debra57

    Posted

    Hi Debra57

    I like you was diagnosed with Osteomyelitis in my left hip at the age of 13 years in 1961. I almost died because of it. I was in hospital for a total os 9 months, it left me with a shortening of the leg therefor gave me a very noticeable limp.I had a Bosworth Spline inserted.  

    At the age of 23 years while in Hong Kong (my husband was in the armforces) I was in considerable pain so it was decided that an Arthodesis would be carried out. I was in hospital for 6 months with a plaster case from just above my left knee and up covering my chest.

    I coped pretty well with the fused hip over the years giving birth to 2 children with a little difficulty.

    At the age of 40 years I was diagnosed with Rheumatiod Arthritis which is all over my body. Since then I have been in considerable pain I have been lucky to be put on Biologic drugs which have helped. Unfortunatley the Arthritis has damaged my knee joints last year I had a Total replacement on my left knee the surgeon found it difficult to do and had never operated on someone with a fused hip before. I am pleased to say to date I am almost pain free with it. The only draw back is I can not twist the knee round now to get trousers and pants on I only have 60 dregee bend.

    I am on the waiting list (should be about 12 weeks ) to have the right knee done I am worried as this leg has done a lot of extra  work on behalf of my left leg, like

     putting more weiight on it to get up from chairs, toilet seat etc

    I also have trouble with the left ankle due to the Arthritis this has almost fused itself.

    Like many others I have trouble with back pain the doctors are saying this is due to bad posture due to the fused hip.

    No-one seems to understand what its like to have a fused hip I know I have coped with it over the years you learn to adapt, but i feel fustrated trying to explain to the medical profession that I cant do certain things

    I'm glad I have found with site as like others I thought I was the only one to have had this operation.

    I live in the UK

  • brandon_74075
    brandon_74075 debra57

    Edited

    Hi Debra, I'm a 27 year old healthy male. I underwent a hip fusion when I was 13 years old after breaking it (which was extremely rare given my age and good health).

    I live a very active lifestyle as an adult. I do experience low back pain and discomfort from being so active.

    I am looking to get a total hip replacement to regain mobility and avoid damaging other parts of my body. I was curious to know if anyone out there had a conversion from fusion to replacement.

    Thanks

    Brandon

     

    • debra57
      debra57 brandon_74075

      Edited

      hi Brandon, I lost my hip to osteomilitis and under a year old. Had a hip replacement, 1 year ago, due to increasing difficulty with sitting and trapped nerve pain. The first attempt failed, my acetabulum fractured on the operating table and they were unable to secure hip. 3 months later, had an ice cream cone hip replacement and although it has held, have VERY little movement, and still on 2 crutches and in pain, physios seemed mistified as how to help. Wish I HAD NOT HAD PROCEDURE as am in constant pain, also think i have permanent nerve damage. You might fare better since, your hip had worked for 13 years, so maybe there is more muscle there. If you do go for procedure, insist on a bone density test of acetabulum ( I did not get this test), so they can tell if the acetabulum is strong enough to take joint. PROCEED with EXTREME caution. It is a very tough operation to recover from and rehabilitation is a long, longely road. If you have any further questions, would be happy to help. All the best. Debra
    • brandon_74075
      brandon_74075 debra57

      Posted

      Greetings Debra

      Thank you for sharing. I truly appreciaye it. I will be sure to take the necessary steps in making an informed decision.

    • debra57
      debra57 brandon_74075

      Posted

      If you do decide to go for your hip being unpicked, ask for an ice cream cone endoprothesis. If I had had this done first, I think the outcome would have beenbetter. The first unpicking, fractured my acetabulum and only the secondrescue op, placed the above endoprothesis in, but at that point there was too much damage done to the already weak muscles and nerves. Basically unpicking an arthrodesis is best done by top surgeon who does hip reconstruction. Possibly an orthopaedic oncologist. If you need further details, please contact me. I think you have a much better chance of success, because your hip was fused after your hip muscles had already developed and also your fusion is not as long standing. Good luck and really think you should go for it to prevent rest of other joints and spine deteriated. Be careful and do lots of research. x
    • geoff91391
      geoff91391 brandon_74075

      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?
    • DanaG
      DanaG geoff91391

      Posted

      Hi Geoff,

      I'm wondering how you're doing while you're recovering from your takedown. Hopefully remarkably well. Please share.

      Dana

    • Lvinbr
      Lvinbr geoff91391

      Posted

      How is your recovery going?  I am considering a takedown and THR. Any advice?  Any surgeon recommendations?  Thanks. 
    • scott33010
      scott33010 Lvinbr

      Posted

      I am 47 yo and have been in a fusion since 15....I am very active and I am in excellent shape....I am also considering a takedown to a THR....I need any advice also any Doctors in the southeast with experience 
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