anyone out there who has a fused hip (arthrodesis)?

Posted , 75 users are following.

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.

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  • Posted

    I had my left ankle fused at the age of 11 and have been in pain with it ever since. Mike
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  • Posted

    Hi all, particularly debra57. I am 62 with 46 years experience of this rare condition. I could have written your words, so ask what you will.
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    • Posted

      hello katie - i am not sure if you are still around , but i want to know if a child who has not been treated for this till the age of 5, can be treated now. does this condition stunt growth ? 
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    • Posted

      Hello maria, unfortunately you ask a question for which I have no answer but it is one that doctors should have no problem with.

      My heart goes with you and all the other contributors.

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  • Posted

    Hi I have had an arthrodesis hip for 30 years which has now snapped and being removed I had a knee replacement 3 years ago has any one had a pin removed and what is recovery time thanks
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  • Posted

    Hi I have had an arthrodesis hip for 30 years which has now snapped and being removed I had a knee replacement 3 years ago has any one had a pin removed and what is recovery time thanks
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  • Posted

    Hi sounds like mine was identical as I was also in cast and have had back problems as well
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  • Posted

    Hi Debra,

    I had a hip arthrodesis done in 1973 because I had a dislocated hip from childhood.

    It was the only solution at the time but as you know over time there are so many problems related to it, problems too numerous to go into especially the crippeling back pain due to having to twist your back to walk.  I eventually had a hip replacement carried out last year and it is brilliant by comparison to the arthrodesis. I now have movement in the hip which allow so many things that other people take for granted. The pain should ease off eventually but at least it won't get any worse.

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    • 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.

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    • Posted

      Greetings. My name is Brandon. I'm a healthy and active male. I had a hip fusion procedure done when I was 13. I'm considering getting a conversion procedure to a hip replacement to regain mobility and prevent further damage to any other parts of my body due to hip immobility.

      How was hour journey from fusion to mobility? Please share.

      Thank you.

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    • Posted

      Is it possible to have a conversion done?

      I fell when I was 11 and dislocated my right hip and they were unable to slip the joint back into place during surgery and I ended up having another surgery a week later where they cut pieces of my hip bone off to make it fit and secured it with pins which worked for a few months but at a check up appointment they realised that my hip bone was actually dieing due to loss of blood when I first fell. I was then told I needed a hip replacement but was to young so they done a bone fusion instead where they removed they ball of my hip completely and fused my thigh bone and pelvic bone together. I was told this was only a temporary solution until I was old enough for a replacement and that it would eliminate all the pain I was in. Im now 24 and the pain never went away at all and I also ended up with other problems which cause pain such a curve in my spine. At my last check up I was told that a replacement would not b possible now as the bone fusion worked so well that they would have to break bones in order to do it and also that the muscles around my hip wouldnt work after so long. Im devastated as I was always told I would get my mobility back and have a better life once I had the replacement. This was a new consultant that told me this who I had never met before and had never been apart of any of my surgeries.

      Any advice would b greatly appreciated.

      Thank you

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    • Posted

      Hi Emma,

      Your story really stuck out to me because I was 10 years old when my left hip slipped from the socket. My situation matches up almost exactly as yours only with more complications. My left hip went out in early 98' and my right began to skip two months later but I caught it early. I lost 1 1/2 inches on my left leg due to them cutting off the ball of my joint and turned my left leg completely out to the left side. Both were pinned initially but while the right managed to go without further complications. My left hip failed with the pin and so finally after two attempts they fused it. Thankfully they were able to turn my left leg back to facing straight but at this point it's not a hip. There is no socket or joint. I ended up having to fuse my left again due to first one failing. In doing so they screwed in a metal rod that covered most of my femur. I was fine for 5 years but then in 06' I slipped and broke my left femur. Since the most of my femur was secured by metal, it broke right above my knee, where There was no additional support. There was a second rod placed all the way down my femur. Seven months later the fusion hadnt healed so they had to insert a bone graph to assist. Unfortunately the bone graph caused a bone infection called Acute Osteomilitis (Staph) so I had to go under the knife again for them to do two cleanings. I was fine until 3 months later when I got into a car accident and broke my femur a second time, only it was right where the femur meets the hip. I already had pins keeping it together so I didn't have to have another surgery and having since.

      I am now 27 years old and the pain has taken control of my life. It started with chronic back pain, which is understandable given that the back has to work as a hip but it progressed. Now my entire back in crippled by pain so it's difficult to stand for even 5 minutes and it has caused crippling pain in my neck which led to noropathy in my hands. Because of this in unable to work and am fortunate that I found this group.

      Emma, I've looked into getting a hip replacement twice over the last 6 or so years and both times a panel of doctors told me that in taking out the two metal rods, 28 screws, and 3 pins, my femur would likely split or be too weak to put the replacement in. My options are medication, injections, and possibly accupuncture or I can have my femur and hip replaced, which gives me about 10-15 years of mobility before being wheelchair bound. It appears that my muscles in the left side are still functional but weak. My advice to you would be to get multiple opinions regarding a hip replacement because unless you have as much metal as me, you should be able to get it done. Feel free to talk to me anytime. It would be wonderful to talk with someone who knows what it's like.

      Best of luck.

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    • Posted

      Also, so you feel pain in your hip? I ask because my right hip feels all the pain when it happens and also is the one that is exercised when stretching. All of my pain for the most part is in my back and other extremities.
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    • Posted

      Hey kelly,

      Thanks for replying. Wow you've had to go through so much at such a young age, I found it hard to come to terms with everything that changed after I fell and especially the limited movement after my bone fussion and the pain. It still sometimes gets to me so I have no idea how you've coped with all you've been through. The doctor that said the replacement would never be possible was a new consultant that I had never met and I was pretty angry that someone I had never met before was taking my last hope of getting my mobility back and reducing my pain away from that I kinda stormed out of his office crying. Im ment to have yearly check ups with my consultant and I havent had one from that day which was over 3 years ago. I have spoke to my gp about and she said she had received a letter from the hospital saying that a replacement may still be possible but they want to wait until im in my 30s so that has gave me some hope back. I do plan on asking for a second opinion the next time I visted my gp though. Yes I still feel pain though it ls more on my inner thigh bone which kinda of feels like its cracking and I get some muscle spasms now and again which can b very painful but most of pain is my lower back and spine and also my ankles from taking over more pressure than they're ment too from my hip.

      Hope that makes sense as im really bad at explaining everything lol

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    • Posted

      I'm really happy to hear that it's still possible for you to get the replacement. Muscle spasms are definitely the worst. I get them in my back on a regular basis. For the longest time I found ways to be positive about my situation, mostly by helping others. It would still get to me sometimes but it was not until this last year that the pain began to radiate throughout my body. I didn't realize it was all caused by my hip until 2 weeks ago. I saw all sorts of doctors that week who all evaluated my pain issues as well as my back, neck, and hips. All of the docs told me the best thing to do was replace my hips, even the physical therapist who said she could only really help with my neck. The orthopedic surgeon then told me I couldn't have it done. I broke down in her office after sshe knocked down other options I through at her and even left crying. I'm still super bitter about the situation and trying to get back to being positive but haven't gotten there just yet.

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    • Posted

      Hi pleased yours worked. Pain got worse and now mostly bed ridden. Worse mistake of my life and fused hip was preferable. Could be because the hip fusion was done when I was 6 months old and had it unpicked at 52, I am now 54 and each day it gets worse.Each fusion is different, but clearly the few like you where unpicking worked was that the fusion was less than 20 years. Enjoy what you have and happy for you.

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    • Posted

      Hi Debra, The hip is very good, I had a very bad back problem in July, revisited the hip surgeon who xrayed the hip and all was fine and sent me for an MRI on my back this showed the problem was due to having my hip fixed for over 50 years the change of gate in walking with a stick to gether with a little arthritis thought to be brought on by my fixed. I am booked in to see a back specialist but it is thought that as I have not had any back pain since October I should just moniter as it may or may not  return.

      I had my pin taken out at Epsom Hospitaln, Surrey, UK

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    • Posted

      Hello I have had a hip arthrodesis in Uk in 1976 and just had it taken down and replaced. For the moment I am on crutches and my docter says it may take a long time for my muscles to work. How long did it take for you to get back to normal after the new hip? 

      Thanks for a reply

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    • Posted

      That is awesome that the hip replacement worked. I have evascular necrosis in my lrft hip which i broke 20 years ago. They fused it when.i was 15 im 35 now. Orthopedic doc. Wants to refuse my hip since it never fused together he also talked about bonegraph to fill the gap to refuse my hip. Im gonna ask him if a hip replacement would be in the question. I have 5 pins holding my hip together, i was fortunate to not be put in a body cast. I was the 8th case in doung the new procedure. Loma linda medical center, one of the best hospitals in the USA
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    • Posted

      Daniel, your situation has si many similarities to my partners. I'd be interested to read your progress on asking about hip replacement. 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. He has about a six month wait for his specialist appt.

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    • Posted

      Wow just found ur thread and really all the hit me hard. I broke my hip when I was 10 and had my hip pinned the blood supply was cut off an i had avascular necrosis. They took out the pin but the damage was done I spent 10 months in a full spika cast, and a total of 18 months in a children's hospital. By 14 the pain was so bad I had no options left they said i couldnt have a replacement because I was to young. Now I'm 39 and have needed total double knee replacement for the last 10 years I've refused thanks to the *great* results of the fusion. Also my back has hurt since I was 15. Now I also have a nerve disease in my ankle thanks to another fall injury. I have searched for anything online to help with the problems of fusion like sex anyone have some advice for me? I'm in a relationship with a great guy who is amazing but he has a torn meniscus and damaged back thanks to a car accident back in October. The positions I've figured out over the years don't work for us. Really need advice!

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    • Posted

      Hi.  "Life with a hip fusion" - that's a great title for an article.  Interesting question about sex.  A friend of a friend of mine - who I met two years ago, had a natural hip fusion due to a childhood disease.  She had the surgery from fusion to artificial hip and is doing well.  The first thing she mentioned was how much better sex was for her.  I won't get into specifics here, but my body has limitations due to the fusion, and I can't help it.  I was married for 26 years and it wasn't until the last 10 that the challenges became frustrating.     With respect to your knee replacement, I'm sorry you're having some problems and understand your saying NO to surgery.  I guess you just never know if the surgery would make things better for you or not?   I'm hearing of the repeat surgeries on artifical knees and hips after 5 years or so it's difficult to know what to do.   I'm very lucky not to have any knee problems or regular pain. If pain comes, it's in my foot and that is usually because of having to walk on rocky roads, or uneven ground.   

       

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    • Posted

      Hi Emma,

      I had a fusion done when I was 18 years old because my femur was rubbing against my socket and eroding the bone. This was preceded by years of other surgeries, all stemming from congenital hip dysplasia. At the time of the fustion I was told to wait until I was 40 to get a replacement. I dutifully followed the rules and had my hip replacement; however, it was not simple.

      Because my hip was fused for so long, I had muscle atrophy and my bones became brittle. During the surgery they broke my femur and had to correct that. Because my pelvic bones and socket were worn away and brittle, the Dr ended up using two cups - one to act as my pelvic bone and the other to be the actual socket. He was worried whether I would even walk again. With time we're hoping my bone will graft with the artificial hip and with activity my muscles will strengthen and my bone  densitity will improve. Then when I get the next hip replacement, maybe it won't need to be custom.

      I'm telling you this to urge you to seek another opinion. My doctor said they stopped doing fusions due to the long term adverse impacts - muscle loss, bone density, etc. I count myself lucky to have found the doctor I had. 

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    • Posted

      Your story is similar to mine. Congenital hip dislocation. Multiple surgeries. Fused before I was 5. Revised fusion at 15 because of growth issues. Now 54 years old with back pain, knee pain etc. saw a doctor today to discuss takedown and THR. I am concerned about the weak abductors but the doc is very positive about my long tem prognosis. Any advice?
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