I have a very complicated hip fusion and am contemplating replacing both hip and femur.

Posted , 4 users are following.

It's a bit of a long explanation but here's my story...

I was 10 years old when my left hip slipped from the socket. I have recently found others with a fused hip and while my situation is similar to some, it is much more complicated. My left hip went out in early 98' and the right followed suit two months later but luckily I caught it early. I lost 1 1/2 inches on my left leg due to them cutting off the ball of my joint. They also 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 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 to The 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 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. After two weeks in the hospital, they released me. 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 haven't 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 is 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 arms and hands. Because of this I'm currently unable to work and am deparate for a solution.

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. In September of 2015 my sister suggested amputation as an option and while extreme, I considered it. I wouldn't have a leg anymore but I thought I'd be able to walk better, ride a bike, and overall, have a better quality of life. I was wrong. I realized that doctors would have to cut into my pelvic bone in order to do the amputation. First off, 1/3 of those surgeries are fatal and if I survived there would be a greater chance of having to use a urostomy and or colostomy bag for the rest of my life. I could also lose sexual function and would likely have to wear something around my waist to support the prosthetic - causing more back pain. I was beyond frustrated with this situation. I thought, "Wow, I can't even get rid of the leg!?! Are you kidding me?" 

I was told to face my demons, told to keep hoping for a better tomorrow and while it's devastating to realize my fate, the worst is that I knew it would happen, only I expected that fate to reach me when I got to 50-60's, not now.

I've always been good about dealing with chronicle pain because I've had it in my back for as long as I can remember. It wasn't until June of 2014 when it began to fall apart. The pain went from being in my back to taking over the vast majority of my body and I didn't understand why. I was diagnosed with Fibromyalgia and soon after a pinched nerve in my neck, which explained the pain. It definitely wasn't okay but at least there was a diagnosis. It wasn't until a little over two months ago that I found out the real a source. 17 years ago doctors fused my left hip, thus making in immobile. That caused my back to operate as a hip and forced my entire upper body to work much harder, just to walk. I saw several doctors that week and they all said the best solution would be to replace both hips. Even physical therapy said they could only really help my neck because my back and hips are essentially frozen. Saw an Orthopedic surgeon and she said I couldn't have the left replaced and implied that she wouldn't touch the right either. Went through different outside of the box ideas with her but none of them would work. The only viable option thus far, in theory, is to replace both my left femur and hip. The issue with that is it, 1) it may not be successful which puts me in a wheelchair OR 2) If successful, I have about 10-15 years of full mobility before I'm wheelchair bound for life.

I am hoping to find people who have had both hip and femur replaced and can tell me how things are going for you. I would also love to speak with anyone who has a complicated hip fusion.

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12 Replies

  • Posted

    Hi Kelly

    So sorry to hear all the complications you have had with your hip.  My son had a SUFE 2 years ago and is still on crutches.  They are just debating whether to do a hip fusion (which we don't want) or alternatives until he reaches 16 and can then have a replacement hip.

    I don't understand why you don't have a ball and socket?  how could you walk and get around if they removed this?  Where are you, in the UK or USA?

    Have a look at one of the facebook pages, I think you will get more help from there.  SUFE/Slipped Upper Femoral (Capital) Epiphysis and ask to join and I'll give you access to the facebook page.

    Best wishes

    Hope this helps

     

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    • Posted

      Thank you very much for the advice. I will definitely join the facebook page. My bone was dying from what my mother told me so they fused the femur to my pelvis. My back and right hip work together to allow me to move. I am in the U.S., in Virginia.

      I'm sorry to hear about your son's situation. If they do the fusion he would be fine. I have yet to find anyone with the same bad luck as me. Lol. He would obviously walk differently but he wouldn't have to have it forever. Anyway, I wish you all the best with the situation.

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    • Posted

      Hi Kelly

      I can understand that the femoral head was dying with the Avascular Necrosis, but don't understand why it affected the socket as well, so I am really sorry to hear what happened to you.

      The problem with a hip fusion, is that the muscles are not used fully, once the hip fusion is done and when you come to have a hip replacement in later life, there are no muscles to support the hip replacement and walking is then very difficult.

      Hope you join the facebook page.

      Best wishes

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    • Posted

      The muscles do atrophy but I know people who have had fusions longer than myself and the muscles were strong enough to proceed with a replacement. There will obviously be. Lot of physical therapy but the fusion could be your best option for the immediate future. How old is your son?
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    • Posted

      Also, regarding my situation I'm not entirely sure what happened to the socket. It was there at some point throughout the surgeries but now the entire area looks like a blurred out, clouded image in xrays.
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    • Posted

      Please could you email me privately. I cannot work out how to do this. Am sure we could be of mutual help. I am female, aged 54 and like you, have pretty harrowing time with complex problems regarding fused hip, failed surgeries, you name it. Still searching, waiting and hoping for a solution. All my best wishes to you to not give up xx
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  • Posted

    hi kelly, im 27 and have history of severe scfe and avn, i am 5 weeks post op total ceramic hip replacement!

    I can definitely sympthatise with you with ur pain, back pain pelvis pain hip kneee even my feet started to hurt, my hip replacement was very complicated but i needed to have it done as im a mum and couldnt work etc and like you it is quality of life.

    I have had the best material of ceramic which is meant to last about 20 years... so i will need another replacement i will be honest the pain is vad atm but im hoping i will benefit from it long term x

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    • Posted

      Where are you Laura, in the UK or USA?  I am interested to know what sort/make of ceramic hip that you had?  Was it a ceramic ball and socket or mix of ceramic and metal?  I read that it has to be very good quality or they can cause trouble.

      Wonderful that you are now recovering and could have the replacement done, we think my son won't last until he is in his 20's as the hip is not sitting centrally in the socket, so will have to have an early replacement.

       

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    • Posted

      Hi Laura,

      I'm SO happy to hear that you were able to get a replacement! How long did you have the fusion? I can only imagine how strange it must feel to be able to lay flat, sit up straight, and be able to actually stretch out your back. I'm sure it's painful but hopefully the pain will begin to fade away soon. How long did they say the typical recovery time is?

      If you don't mind me asking, what complications did you face While having the replacement?

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  • Posted

    after my fused hip of 52 was unpicked, the first op to unpick, broke acetabulum and not metal hip implant worked, I was left in agony and devastating disappointment. 3 months later, an ice cream cone endoprothesis and bone grafts. Nearly 2 years later, mostly bed ridden in constant pain and waiting for another op. Believe me, I do understand. Whilst I am older than you am still only 52, and walked unaided to my doom for hip unpicking and do not feel ready for "old age" yet. Would like to work again, but till at least non stop pain is sorted, won't be happening.

    All I can say is NEVER GIVE UP, fight for a quality of life, you are not alone in your little understood by many highly complex hip problems.

    Does anyone know how to post private email? For those of us that might like to chat on the phone to encourage further??? Would like to see if I can offer help and support and exchange Doctor suggestions. All the best to you, hang in there, a solution will be found

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    • Posted

      Hi, If you look at facebook page SUFE Slipped Upper Femoral (Capital) Epiphysis, and send a request to join and I will add you - can then swap e-mail and telephone numbers.  If you are not on facebook, then there is a charity in the UK called 'STEPS' - if you e-mail them and ask for Ruth's details, and I will e-mail or call you. Ruth 
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