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
janet1963 debra57
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Hi I had my hip fused after a motor bike accident over 35 years ago , I too have severe pain in my back and knee , they replaced my knee 8 years ago but it's starting to play up , I work for the NHS enjoy it but tired and rely in pain killers . They have told me they are never goin to replace the hip as there is too much muscle wastage ,so it's just get on with it ,
its just so annoying having to ask for help things like cutting toe nails and painting them and with a house full of men not a lot of help and they have no idea ,bless them , but then it could be worse I see people in the hospital terminal and things don't look that bad ,I find lidocaine patches help a bit and the oramorph but take care and all the best
Jeff45023 janet1963
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Janet,
Have you gone to multiple places to discuss the hip? 5 years ago, I visited an orthopedic surgeon near where I live. He was pretty negative about a surgery like that, he just focused on all of the complications, and I left there feeling pretty dejected. Last month, I went down to Rush in Chicago just to see what their doctors would say about it. I live near the WI/IL border, so luckily I'm not too far from one of the better orthopedic hospitals in the country. I was expecting Dr. Jacobs to say pretty much the same thing that the other orthopedic doctor said 5 years ago. After the introductions and some small talk, he came right out and said that they could absolutely do the surgery. He said his team (he works in a group with about 4 or 5 other orthopedic surgeons) has done them before. It would involve some hip reconstruction, a longer recovery, but it could be done and the results are pretty good. My point being, you may have to find surgeons who do hip reconstruction, at the better medical centers around the country. I also think that some surgeons simply cover themselves the best they can by really focusing on all of the risks associated with it. There are always risks with everything! This Dr. Jacobs had positive things to say about this as well, not just the risks, it was refreshing to not have a surgeon just hammer away on all of the risks and bad things that could happen. Also about the muscle atrophy, I think the surgeons main concern is that there won't be enough muscle to fully support the new hip replacement, in which case you'd be very susceptible to dislocating it and ending up right back in the hospital. That does seem like a very valid point, but I can't help but think that after the surgery, there are things you can do to help rebuild that muscle. Maybe that's just naive to think that. Good luck.
dorby54 debra57
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Debra, in looking through all your responses, I haven't ready anything about shoe lifts. Is it just a given? I've had my hip fused for 32 years, and it wasn't until last year that I finally found someone who put a lift on my shoe that made me feel "normal". I have a 2" lift. Do you? Anyone else?
DanaG dorby54
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Hello.
Yes, I have a shoe lift also, 1.5". Expensive little sucker.
mindy86412 debra57
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There is a bike we can ride! There's a stand-up elliptical bike that's made that we have the range of motion for since you're standing. It's like the elliptical machines at the gym but a bike. I can't post the brand or the post will be deleted. I can ride a bike after 20 years of not riding a bike and I love it!!! You can even adjust the stride which is helpful since I need a shorter stride. I use it to commute around town, ride with my kids and for a workout.
Paulman debra57
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Ive had a hip fusion for 38 years . this friday march 3rd i will be having surgery to put in a hip joint. I am scared to death. Dont know how the muscles will fire after 38 years of being dorment. Guess we will find out ..
Jeff45023 Paulman
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Paulman,
Good luck on Friday!! I'm sure I can speak for everyone here and ask that you please let us know how things turn out with your new hip! I hope everything goes well, and I truly hope we hear from you in a few months with updates on how everything went. Thanks! Chris
Paulman Jeff45023
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Paulman Jeff45023
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DanaG debra57
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Hello Debra,
I just searched "I hate having a fused hip" and stumbled upon your post. It was one of very, very few (as you mentioned). I also feel alienated by having a fused hip for that reason. Here's a brief overview of why I had the fusion.
In 1995, I was in a catastrophic car accident. When I fell out of the car, the car ran me over and crushed my pelvis. After waking up from a 2 month coma, I was put into skeletal traction hoping my right hip would form scar tissue and no repair itself. It didn't. I had reconstructive surgery and a week later, my hip dislocated again. They put me back into traction for 3 months. Traction was, ultimately, removed and I began rehab. A few months later, mind blowing pain made it evident that the reconstructive surgery wasn't enough. There was no other option, but to fuse it. In 1997, they fused it. Months after the surgery, it wouldn't fuse. The plate broke in half and rhe screws loosened. Then, it started to fuse.
Twenty years later: I can't stand on my right leg (no one knows why), so I limp considerably. I often use a cane. My back pain is, usually, bearable because I have regular chiropractic visits. Driving is often painful. Getting in and out of a car sucks. Putting on socks?!? Forget it. It's hell. When people ask what it's like, I tell them I'm always uncomfortable. Maybe not always in pain (although often I am), but always uncomfortable, stiff...
I'm married. I earned my PhD and teach Chemistry at a high school and college. So in spite of it all, I've been able to live life. But hot damn...it's tough.
brittany1990 debra57
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i was diagnosed with hip perthes disease when i was in 5th grade i guess i had it since i was 2 years old but never surfaced until i was in 5th grade. right away i had to walk with cruches and i was in and out of riley hospital all the time. my hip bone was damn near gone so with me being so young instead of a hip replacement they went ahead and did a hip fusion where they put metal rods and screws into my hip bone to my pelvis and eventually they fused together causing me to not be able to move my hip at all whats so ever. ive had a hard time walking up stairs, sitting down, going to the bathroom, shaving my right leg, putting on my socks and shoes i cant ride a bike right. i cant really run or squat. it was just an everyday struggle. It still is an everyday struggle. i had the hip fusion done when i was 13 or 14 and i a now 26 i still have the fusion and i went to see my new hip doctor yesterday because i was wanting to talk about surgery and the possibilitys with having a hip replacement. but the news i got i wasn't expecting. he told me that with me having my hip fused my muscles in that thigh are scarrd from not being able to use them properly. and with having a hip fusion converting into a hip replacement is very complicated more complicated than a normal hip replacement. there are alot of risk factors like the nerve in my leg if i stretch it out to much after surgery it could cause my leg to not be functinal. i could also get an infection which would cause the doctors to have to redo the surgery or take it out completely and i would have to walk with a cane or what not. but he told me that is a 5% to 10% chance. which is low for me but high for them. the plus side of having the surgery is ill be able to sit right go to the bathroom right put on my socks and shoes ill have more mobility in what i do than i do now. but i wont be able to squat or run a mini marathon or anything. my hip will never be fully normal ever. it was alot to take in and the best bet was for me to wait a little longer on having the hip replacement since i am doing good now with my fusion. im still feeling down about the news. and scared and terrified for when i do go and have the surgery.
janesetta29665 debra57
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Hi debra57! I too have had a hip fusion at the age of 14 and i now am 45. Yes it is very lonely out there for people like us and im happy to hear from someone. I have problems with my lower back right knee and and I have to have a knee replacement , not to mention they have to go back in and reset the hip. They didn't want me to puck up weight or have children after my procedure . I did both lol I gave birth to 3 children and I gained about 40 more than I was when I had the procedure. God is good im still here but im paying the price. I wasn't even suppose to be working but I worked since I was 15 . I know ur pain lol if u wanna ever talk message me
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christine24271 debra57
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I've had similar life. My hip fusion was done aged 14 after years ofhospital from osteomyelitis. I managed a hugely adventurous life of long distance sailing diving teaching until about 60. Always with strugglingling to overcome pain from my. Spine. I'm now 75 and can barely walk and spine badly misshapen. I went to top surgeons to ask for a revision and all said no way. But now I have a Surgeon wants to do it. I'm scared because the outcome is a risk. I have 6 months to make a decision. My back is definitely getting worse and my walking getting worse and only with a walking frame. I wonder if you got any replies to your post? I can't decide what to do.
Paulman christine24271
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DanaG christine24271
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Hello,
I'm making an appointment with a surgeon in NYC who can do the takedown robotically, which sounds promising the way he described it. I'd be happy to share the information that I learn. Maybe more information can help clarify your decision.
In the meantime, I find continuous chiropractic care to be my lifesaver regarding back pain. I know it's hard to find a good chiro, but it is likely to be worth the search (if you don't have one).
Dana
Anax2011 DanaG
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christine24271 Paulman
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