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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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  • novemberfive
    novemberfive debra57

    Posted

    Hi Francis .. sorry to hear about your pain. It's now 40 years since I had my arthrodesis and I'm afraid for as long as I can remember.. lower back pain has been a constant companion. In my case it does come and go. Infact I have just had 5 constant weeks of it, but it mysteriously disappeared overnight a few days ago... Halleluiah !

    I contacted The Physio Direct service this time and they sent me excersice clips to watch and try. I'm not sure if it was coincidence, but the pain disappeared 2 days after starting the excersices.

    Ironically the 1st physio who contacted me had to pass me on, as she didn't know anything about an Arthrodesis or it's associated problems. Going by what I have read on this forum, it seems that we are indeed .. a rare species.

    • debra57
      debra57 novemberfive

      Posted

      Most physios I have experienced no less than we do about back ache caused by fused hip. Best to follow advice given by us lot on what helps. Good luck
  • anna28103
    anna28103 debra57

    Posted

    Good Morning Everyone,

    Needless to say I feel your pains, as time goes by and even though I have tried to stay active the pain increases. I had my right hip fused back in the mid 60's due to a massive infection after one of many surgeries due to a birth defect in both hips. All was well until the fusion broke and had to be re done bak in 1973 but afterwards I had no significant problems until this past few years when my back started bothering me, found out that it was a pars defect of the L5-S1 vertibrae or rather a fracture, surgeon sugests a spinal fusion so my question is, has anyone with a fused hip had a spinal fusion? 

    • Skit90
      Skit90 anna28103

      Posted

      hello, I hope you're still active on here! I had my hip fusion at 12/13 yrs and I'm now in my early 30s and looking at the same fusion in my back. I was wondering if you got your back fused? did it help? can you still bend/move?

  • craigjonez
    craigjonez debra57

    Posted

    Me, i am 25 years old i have had a rugby ball shaped hip since the osteomyelitis infected my hip knee and ankle, i am debating a hip replacement as, Dwp wont help me and I cant do the physical jobs that others can do
  • linda62396
    linda62396 debra57

    Posted

    Anyone who has replied to debra57 live in the UK ? 
    • francis39984
      francis39984 linda62396

      Posted

      Hi Linda,Francis here,yes I am resident in UK ,Glasgow to be exact,why you asking?
    • Anax2011
      Anax2011 linda62396

      Posted

      Hi Linda

      I have a fused hip and live in the UK, Dorset. I had it done, age 10, after couple of unsuccessful surgeries to fix an infant hip displasia. I am now 35. 

    • linda62396
      linda62396 francis39984

      Posted

      I was curious because it appears most replies are from America

      Its nice to know I'm not the only one who lives in the UK with a fused hip

    • linda62396
      linda62396 Anax2011

      Posted

      Hi Anax

      As I said to Francis39984 I am curious to find other people in the UK with a fused hip

      i think we are a rare breed

       

    • francis39984
      francis39984 linda62396

      Posted

      Hi Linda good to know there are at least three of us fusies from UK on this site at least. Been like this since I was seventeen,Im now 55 and for the last twenty years the back pain has got worse and worse,tried acupuncture which worked for a month or so but now rely on up to 8 codryamol a day just to sit on my backside in fifteen minute shifts before I have to get up and stretch.Hope to hear from you both soon ,taxi due Xmas shopping waits for no-one.
    • linda62396
      linda62396 francis39984

      Posted

      Hi Francis

      I've  had my fusion since I was 23 years old I'm 67 years old now. As you say the back pain is bad.

      I have just had 2 knee replacements in the last 2 years at least my knees are pain free

      My left foot is full of Arthritis now this on the same side as my fused hip.

      Have suffered with Rheumatiod Arthritis since 1990 which has effected me all over my body.

      Hope you managed your Christmas shopping,

    • ian28480
      ian28480 linda62396

      Posted

      Hi Linda, i am in the UK, i am 70 briefly I had my hip fixed when I was 18 and six years ago suffered with severe back pain two yrars ago i met a surgeon who took out the pin and put in a hip joint, all back pain stopped. In June 2015 the surgeon signed me off as job well done. The only other consequence of the operation was that due to muscle wastage I have to use a walking stick but I do not mind as I have no pain. When I saw the surgeon in June I suggested that with further specific Physio so I could strengthen my operated leg, this he agreed, well I saw a physio who gave me some strengthening exercised and an exercise bike, within a week the pain in my leg was so severe I could not walk. The severity of the pain subsided after a couple of weeks I was move around but unable to sleep for more than one hour a night after eight weeks the pain went but I could not feel my leg. Three weeks after this I twisted my back pulling up some stair carpet the pain came back but all subsided after four week. I eventually saw the surgeon who took an xray of my replaced hip and all was fine. The surgeon believes the pain is coming from my back and is due to pinched nerves due to the change in my gate, have had an MRI scan and am waiting for the results for the past 4 weeks i have had no pain but a numb leg. We are all different but weighing everything up I am pleased that I had the operation due to the dissapearance of the back pain and how lovely it is to be able to sit correctly and ride a bike.

      Ian

    • novemberfive
      novemberfive ian28480

      Posted

      Hi Ian ... your hip reversal sounds amazing and I can only imagine riding a bike again. Having spent the last 40 years or so with a fused hip, I had come to the conclusion that no one in the UK had any experience of a fused hip. 

      It was only earlier this year when I had a knee replacement that I found out that there may be a chance of having my hip done as you have.

      At the time I was told the best place to have it done would be to return to Wrightington Hospital where I had my hip fused all those years ago.

      Can you say which hospital  your surgery was completed at ? It may well be something I need to research if my back pain continues.

      Fitting carpets and riding bikes is only a dream at the moment !

    • ian28480
      ian28480 novemberfive

      Posted

      Hello, I had the surgery under NHS at Epsom Hospital, Sirrey, Oh the pleasure sitting in any chair, or even on the loo.
    • linda62396
      linda62396 ian28480

      Posted

      Hi Ian 

      The Uk fused hip is growing, it's good to hear that I'm not the only one in the UK 

      People or doctors do not understand the restrictions a fused hip has.

      Having a new hip must be liberating , you have been lucky to find a surgeon

      to do the operation

      Good luck with your MRI results

      Linda

       

    • novemberfive
      novemberfive ian28480

      Posted

      Thanks Ian .. it's not too far for me as I am directly south of Epsom on the south coast. I dont particularly want the long trip North to Wigan. It must be amazing to sit properly, even now I am sat here with my leg stuck out in front of me !

      Yes, every Surgeon I have met in the past has always said they dont know of anyone who has done a reversal procedure. But I am aware they have done plenty in the states, many with good results. It is still a grey area in the UK.

      All the best and thanks for the info. 

    • Anax2011
      Anax2011 novemberfive

      Posted

      Hi Linda and Ian.

      I had gone through two specialist one in Poland, back in 2001 and one in UCLH London, about two years ago. In my case both said the hip replacement surgery won't improve my life and will most likely worsen my physical state. I am also not very keen on going under another surgery and rehabs, I had many anestetics and fidgeting with my body through out young life and it is inprinted so much in my head it affects me everyday. It was difficult to accept to stay fused especialy beliving from the age of 10 when i was told it will be possible to unpick the hip when i stop growing. At the moment I'm in a good phisical condition, knees pain is much more present than other hip pain or a back pain, though my back gets stiff while walking, standing or sitting, it is very unpleasant. Uper back and neck seems to stiffen and get painful from time to time. I do cycle, walk and currently do a part time standing job. I rotate my fused side knee and I'm worried that join wouldn't last for long. I started doing some physiotherapy last month but find it difficult to motivate myself and find time for exercises. It is great to hear from you. Regards, Pawel

    • francis39984
      francis39984 Anax2011

      Posted

      Hi Linda,Anax,Ian and Novemberfive. Good to hear about Ian's replacement hip,but I think it's only a pipe dream as far as l'm concerned,was told years ago if I was operated on bone would calcify when opened up,don't know if that's the case but not willing to take the chance so well done Ian more power to your new hip.Signing off now,having an aperitif or two of Scotland's finest.
    • debra57
      debra57 novemberfive

      Posted

      Please please be careful. I had a fused hip due to osteomyelitisand hip was surgically fused at 6 months old. Had it unpicked at 52 with disastrous consequences.First op they broke acetabulum trying to secure the prothesis and could not find a fitting, so left me with a detached and dangling leg. 3 months later was offered pelvic reconstruction with an ice cream cone endoprothesis, a huge operation and had bone crafts to repair acetabulum. Nearly 3 years later,practically bed ridden. Constant pain. Nerve damage, 2 years worth of painful exercises and trying to walk and the physio made leg worse. Was told the muscles were so atrophied and damaged there is no chance of them ever working. From what I have learnt, the earlier you had fusion and the longer you have had it, the less chance of success, so be warned, before you land up like me at 54. Sadly and horribly disappointing is that I have less not more mobility in hip and it is as if it is still fused in terms of movement, but I now can't walk and have no time when I am not in pain. Never had pain that starts at toes right up to ribcage on bad leg sid At leadt with a longstanding fusion, you can walk. I know about back and sitting problems and there is no easy answer, but my fusion was 100 preferable to this.

      If you still, want to try, maybe if you went to a royal orthopaedic hospital and asked for ice cream cone endoprothesis as a first not second choice, you may have more luck, but be very very careful. Make sure they do a cat scan and mri and plan very carefully. This op after your 40 year fusion is very risky. Had to warn you, because other successful conversions may be due to them having an adult fusion (childhood hip muscles have then already developed) and hip not Neen fused for more than 20 years and therefore the muscles, whilst still weak, may still be revivals if you know what I meaN. My hip was fused for 52 years and yours 40, which is a long time. Please feel free to ask questions happy to help. Just trying to prevent you from suffering the agony and disappointment. All the best, regards, Debra

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