anyone out there who has a fused hip (arthrodesis)?
Posted , 82 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.
8 likes, 234 replies
Apiratespumpkin debra57
Posted
Hi there, i too have been living with left hip fusion since i was 15 years old. i was born with undeveloped hip socket and had several surgeries by the age of two, but to no avail. i developed severe arthritis and eventually had it fused at 15. I too always tried to live as a "normal", have done an ok job until now, but felt no one could understand how truly EVERY THING is affected by that blasted hip! How much it hinders the simplest activities! I like some, have also been through feeling like the medical oddity in the healthcare world. I am now 47 and have severe scoliosis and bulged discs in my back and i am faced with needing both of my knees replaced due to crippling arthritis. I have become extremely depressed about my situation due to pain and hopelessness. I am worried about the right knee not going well, and then having not even one good leg to bend with. i am worried about the left knee rehab capability due to the fused hip. I always hoped a total hip replacement would be in my future, not this.
jane51872 debra57
Posted
Hi Debra!
I am so grateful to see your post. I was born with a dislocated left hip and at age 4 months doctors tried to fix it with surgery. They failed and damaged my sciatic nerve. They also fused my hip. Like you I spent much of my summers in the hospital and was in two full body casts. I have often wondered if there were others in the same situation! I am now 62 and have always walked with crutches. Sitting is always uncomfortable and I have severe scoliosis. On the positive side, I spent 35 years as a teacher!
I have considered hip replacement but am worried that since my muscles are so atrophied I would not be able to stand. If anyone out there has had hip replacement surgery after so many years of a fused hip, I would love to hear the results!
Thanks!
alan28335 debra57
Posted
Hello All I had a arthrodesis hip done aged 7 which is now 50 years ago. Totally relate to this group particularly re the childhood experiences of full body casts, braces, long hospital stays and, as an adult, the back and knee issues. I have had various surgeries over the years including some leg reconstructive surgery using illzarov frame about 10 years ago (mainly to lengthen and reposition the leg ) Based in UK and with a current fracture in the femur do to fall. Hope you are all keeping well as possible.