1. Community
  2. Bones, joints and muscles
  3. Osteomyelitis

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

Prev Next
  • john51868
    john51868 debra57

    Posted

    I also have had a left hip fusion since I was 11 years old,I am now 75,managed well thoughout my working life but for some years have had inevitable problems with lower back problems and now left knee problems which require tkr which is due to take place in sept.2014,I am worried about outcome can get no real info,has anyone had a knee replacement with a fused hip,love to know the outcome
    • janet1963
      janet1963 john51868

      Posted

      Hi I have fused hip and TNr 8 years ago vey good but still a few back problems but knee great they also took half the pin out of hip cause snapped thanks 
    • john51868
      john51868 janet1963

      Posted

      Hi,

      You had a knee replacement whilst still having fused hip is that correct?and its been fine since,thats great!what was recovery from opertion like?

    • janet1963
      janet1963 john51868

      Posted

      It was a bit rough sfter op as I had general and spinal and spinal left in for 3 days to control pain so was in intensive care but the knee is fine I was out in 5 days and recovery was about 4 months then back up gym if you have a fixed hip you learn to adapt but it is fine now I still get some pain in my back but that is because of the hip and will never change but apart from that is great thanks
    • john51868
      john51868 janet1963

      Posted

      Hi Janet,the problem is I have seen 3 consultants and all have given me different advice,one said he wouldnt touch it with a bargepole as it would not last,another was rather blarsy  about it giving me the impression the implications of how hip fusion effects ones life,my own consultant was rather more cautius and felt I would need a special joint made as the original has become malformed over the years,I t doesnt leave me with much confidence approaching the operation,I am signicantly older than you  so maybe thats a factor,hearing of your experience has helped a lot.many thanks,John
    • janet1963
      janet1963 john51868

      Posted

      I has to have knee replacement as on morphine and the joint was bone on bone the op was done with the leg hanging over table but was done over 7 years ago some slight pain but nothing compared to before and I am up the gym most nights and work in a hospital so on my feet all day glad I had it done as walking with sticks before my consultant was brilliant  might need another but not worried about that hope this helps 
    • john51868
      john51868 janet1963

      Posted

      Hi Janet,I  was wondering how the operation was carried out the hip being locked,that explains it,was post op. physio straight forward as we cannot lift our leg to bend,can you still bend your leg past 90 degrees as I need to do that to put socks on and shower,sorry to be a pain but its difficult to obtain this sort of info,people complain of clunking of the joint ,do you get that?

      Thanks for you help as you can probably tell I am pretty worried about this op. 

      Regards John

    • c.87877
      c.87877 john51868

      Posted

      I am currently in hospital having undergone the first stage of a 2-stage total knee replacement on this past Thursday. Cultures (both bone and tissue) were taken and nothing has grown as of yet. We're 4 days out. The infectious medicine doctor is just saying it looks like she will treat me with a broad-spectrum antibiotic because they see nothing and if something is sub-acute it will address it. 

      My brother told me that the surgeon said he will be performing an knee fusion, bu that is confusing to me since there is no indication of infection. I would hope that since things did not turn out to be as he thought (infection) he will reconsider. I am a relatively  young woman with lots of living yet and would not be able to drive, sit in a movie theatre or do many ordinary things with a fusion. 

      Please inform me of anything that might come to mind as to why he would do so without infection present.

  • janet1963
    janet1963 debra57

    Posted

    I have fused hip and also knee replacement but still work Ang go up the gym I just adapt bad days and good days  thanks 
  • janet1963
    janet1963 debra57

    Posted

    My hip has been fused for 29 years on weds so it lasts ok x
  • donaldk1
    donaldk1 debra57

    Posted

    Hi debra57, I was born with a congenital dislocation of my righr hip. at least thats what i was told. My hip was fused at a very young age probably about 3 or 4 years old. In 1968 i suffered an accideent that resulted in my left hip being replaced. In 1998 I started to get pain left hip that turned out to be reflected pain from my back.  I was diagnosed as having severe curvature of the spine resulting from the way i walk.

    I am currently suffering pain in my right fused hip. family doctor suggests tendon problems. I am not so sure. Pain has reduced to a continuos ache that makes me feel unwell.  I am 67 years old and can see no improvement anytime soon. I get bad back pain after walking 20 to 30 yards

  • janet1963
    janet1963 debra57

    Posted

    I know the feeling mine was fused in 1986 when I was 19 and last year the pin snapped and half taken out as it was protruding from the hil into the muscle , but have you had your legs measured as I have a difference in length and this can affect my back ,it does help having your shoe built up as I work long hours in the nhs ,( which all of the young doctors and physics have never seen an arthrodesis hip ).

    my knee was also replaced due to the hip with limited bend ,but believe me if you ask the surgical appliances up your local hospital  to have your legs measured does work it relieves some of the pressure on your back ,

    will they put in a new hip as I have been told my muscle had deteriorated too much for a hip replacement and we live in west wales end of nowhere so they won't take it on in our small hospital but have been tol some of the larger ones will. Good luck hope this helps 

     jan

  • c.87877
    c.87877 debra57

    Posted

    I am currently in hospital having undergone the first stage of a 2-stage total knee replacement on this past Thursday. Cultures (both bone and tissue) were taken and nothing has grown as of yet. We're 4 days out. The infectious medicine doctor is just saying it looks like she will treat me with a broad-spectrum antibiotic because they see nothing and if something is sub-acute it will address it. 

    My brother told me that the surgeon said he will be performing an knee fusion, bu that is confusing to me since there is no indication of infection. I would hope that since things did not turn out to be as he thought (infection) he will reconsider. I am a relatively  young woman with lots of living yet and would not be able to drive, sit in a movie theatre or do many ordinary things with a fusion. 

    Please inform me of anything that might come to mind as to why he would do so without infection present.

  • richard51924
    richard51924 debra57

    Edited

    Hello Debra and all the other repliers. I had an athrodesis and osteotomyof my left hip in 1972, aged 17, as a result of perthies disease at the age of 15. 2 years of hospital including 9 months in a hip spiker plaster failed to dent my spirits and I was able to pass enough o levels in hospital to start an apprenticeship, and as a bonus my surgeons assistant was then newly qualified JPR Williams, the then Welsh fullback and a hero. Having been now denied the ability to run and play most sports I endevoured to find something new. Sailing and skateboarding led me to a life as a proffesional windsurfer for 3 years before continuing on into a new carrer as in engineering. Married with 4 children, a mortgaged house and a small boat and finally a Harley Davidson complete my mid life crisis.

    My point being that like yourself and all the other correspondants I have tried to make the most of my life. Now however, just like the others, the long term effects of the athrodesis are taking its toll.

    People, inluding my doctor, just don't understand when I say "my back has gone again" it doesn' t just mean I have backache. They don't understand that every step I take and have to swing my back is more than just a pain, its agony. They don't know that putting on my socks on reduces me toa sweating wreck, and that just going sitting on the toilet needs planning and reduces me to tears.

    In desperation once I insisted on seeing an ortheopedic consultant who then asked me if I would present myself to his new intake of student Drs as they would never have seen anyone my age, now 58, with such a condition. Wrong choice. I was reduced to the status of Freak show ecxhibit and have never been back. The problem is that I don't consider myself disabled and I have worked hard to make sure others don't see me like that either. I have never asked for help or encouraged pity, but I no longerbother taking pain killers as they don't work, I just live with with the daily pain and try my best to live with it. Now though as time goes on the only person who really knows how I feel is my wife of 30 years. Other than that, I really thought I was the only person in the world with this condition until I read this post.

    I would welcome a conversation with other people with this condition who can really appreciate the predicament we are all in

    • cece12019
      cece12019 richard51924

      Posted

      My L hip was fused in 1968, and as I age, I too have multiple aches and pains. Some worse than others. (Lazer surgery for DDD and osteoarthritis of the spine is helpful.) Each new problem I have had has presented me with challenges other people don't have. (ie)Toilet use has been very difficult for me with right shoulder surgery, then fractured ribs, then fractured pelvis... Pelvis fracture was the worst though. The hopital I went to wanted to discharge me to home from the ER, but when I tried to walk, I displaced the pelvis fracture with each left step and it made a terrible and painful pop. Pelvic fx. for non-fused hip people is easy... NOT us! It took me 6 weeks to recover. But all these things do pass, and I also do not consider myself handicapped.

      I too was used as a "guess what this is" exhibit for medical residents, but since I am an advanced practice nurse they were more amazed than insulting.

      Chronic pain is a terrible thing, and I really don't have it anymore. I still have weather forcasting aches, bursitis flares...My relief /control is from occassional R hip cortisone shots, daily water exercise and occassional Ibuprofen and occ. massage.

      I like the support of this group too!

    • debra57
      debra57 richard51924

      Edited

      Well apart from your wife, I really DO UNDERSTAND exactly what you'regoing through, and it is a lonely problem. Have NEVER met anyone with a fused hip in 54 of my life. Since the time I posted originally at age 52, I have had hip unpicked and now nearly 3 years and 2 failed operations, I am in more pain and 80% bed ridden and alternating between hopping on 1 leg and wheelchair. Am currently waiting for possible 3rd operation. Things are really tough. Would love to discuss this with you and share whatever I can with you, especially warnings and pitfalls to avoid. If you can find my private email, please contact me if you wish. I cannot see your email, so see what you can do. Wishing you all the best and NEVER give up, cause I will continue trying to get this blasted hip sorted out yet!
Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.