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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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