Living without a hip

Posted by mary121658 @mary121658, Dec 5, 2018

Does anyone know how it is to be without a hip. I've had 4 surgeries in the past 6 months all due to infections in the artificial hip. The hip was removed and replaced with a spacer and that got infected within weeks. They removed the spacer and put antibiotic seeds in. I've been without a hip since June. I can't walk, have sex or even stand for a minute. I'm on antibiotics permanently which I believe after so much they no longer work. I don't even know how I got the first infection cuz I had the hip replacement for over a year when I woke up screaming one day. Any advice would be appreciated. Oh I don't have much luck with this kind of surgery cuz the other hip was done 3 years before the 2nd one and that leg is useless. The surgeon cut nerves and I woke up screaming and a neurologist did nerve conduction studies and found I had RSD. Very excruciating painful disease due to the mistakes made during surgery. I have drop foot and rotation up above the knee so I can't even count on that leg for help in walking. If anyone has experience with this I'd appreciate hearing from you

Interested in more discussions like this? Go to the Bones, Joints & Muscles Support Group.

@martinwach

I turn 80 in three months and failed to get hip replacement for the 4th time always for a simple reason and this time on the off chance that one of my 8o year old teeth might cause an infection and affect the new hip. In the meantime my hip moves up a little more causing some interesting things to happen. As a result I began doing research on alternatives and it is amazing to see the advances in Robotic Orthosis combined with advances in medical alternatives. My main concern is not to get any worse and the possibility of ending in surgery because of a fall. I will be contacting groups that are creating these wonderful attachments to discus ways to adapt skeletal units to not only relieve the need for replacement but to help individuals that have lost the hip regain mobility and a normal life of mobility. Would like very much to work on this with anyone interested and sharing what I find. Marty

Jump to this post

Hi Marty - this all sounds amazing and I'd love to hear what you find out. I'm in the UK but there might be some companies here who are doing the same thing. Living a normal life without a hip replacement would be so welcome. Thanks Jenny

REPLY
@martinwach

I turn 80 in three months and failed to get hip replacement for the 4th time always for a simple reason and this time on the off chance that one of my 8o year old teeth might cause an infection and affect the new hip. In the meantime my hip moves up a little more causing some interesting things to happen. As a result I began doing research on alternatives and it is amazing to see the advances in Robotic Orthosis combined with advances in medical alternatives. My main concern is not to get any worse and the possibility of ending in surgery because of a fall. I will be contacting groups that are creating these wonderful attachments to discus ways to adapt skeletal units to not only relieve the need for replacement but to help individuals that have lost the hip regain mobility and a normal life of mobility. Would like very much to work on this with anyone interested and sharing what I find. Marty

Jump to this post

Hi Marty...I'm 70 years old and have been without a left hip for 14 months now (Girdlestone). I'm actually getting around quite well now with no hip implant. Are you also without a hip joint or just in need of a replacement but hesitant to get it done? Robotics is always an interesting topic in this day and age. Wishing you wellness....Cindy

REPLY

Hi Cindy, surprisingly I still have a hip but it has moved up about 3 centimeters and putting pressure on the nerves and circulation so that is why I am looking for something to relieve the pressure. At my age I would really like to keep my parts if possible and maintain some mobility. My wife and I are popular children's book authors and artist and have a Gallery and Gardens that is doing very well. I would also like to spend time maintaining our botanical garden and need enough mobility to do the basic tasks. So I am looking for ideas that would help and I think there are some possible robotic attachments that just may do that and imagine having something simple that would give a person options to major surgery. Could you tell me a little more about how you manage your mobility it sounds interesting, Check out deliawach@facebook. Thanks Marty

REPLY
@martinwach

Hi Cindy, surprisingly I still have a hip but it has moved up about 3 centimeters and putting pressure on the nerves and circulation so that is why I am looking for something to relieve the pressure. At my age I would really like to keep my parts if possible and maintain some mobility. My wife and I are popular children's book authors and artist and have a Gallery and Gardens that is doing very well. I would also like to spend time maintaining our botanical garden and need enough mobility to do the basic tasks. So I am looking for ideas that would help and I think there are some possible robotic attachments that just may do that and imagine having something simple that would give a person options to major surgery. Could you tell me a little more about how you manage your mobility it sounds interesting, Check out deliawach@facebook. Thanks Marty

Jump to this post

Hi Marty...I tried to check out the facebook account but nothing came up. Sounds like you and your wife lead a very interesting life. I'm in Michigan, USA. My husband and I were wintering in Florida last year when I ended up with an infection in my implant I'd had for 17 years. I didn't even know I had the infection until 5 days prior. Two emergency room visits, then shipped to University of Florida Shands Hospital where my surgery was done on an emergency basis. The plan was to put an antibiotic spacer in for a few months, then another hip, but when surgeon got in there the infection was so bad in my muscle and bone he couldn't do that. He said it was either amputate at the hip or remove as much infection as possible as well as implant and keep me on oral antibiotics after the IV antibotics for 8 weeks. I lost my vastus lateralis muscle, iliotibial band, and part of my gluteal muscle. All of it was dead and necrotic. The surgeon said it was too risky to ever put in another hip for me. I am so surprised at how well I am doing. I use a rollator walker in my home most of the time, but when I go out to dinner, shopping, etc, I use crutches. I'm transitioning from underarm crutches to forearm crutches and I can even get around quite well with just one crutch. I also practice in the house with just a cane and works pretty well for me. I can take 5-10 steps with nothing at all but it's a pretty gimpy walk. When it gets warmer out, I hope to spend more time practicing outside. I ride an upright exercise bike 10 miles a day and bought a tricycle too. My husband and I went out once to ride on a warm, but windy day and did 2.5 miles! I can cook, clean up, clean bathrooms and dust ok. I can't sweep the floors, but I'm working on that a little bit too. My husband and I love to fish and camp witch we did last year. We used our son's pontoon boat for fishing last year and I could get on that with my crutches just fine at the dock. This summer I will try to get in our bass boat! I think I can do it now. I spend a lot of time exercising to build up my Quadriceps and Gluteal muscles and do chair yoga also. I don't really have any constant pain, just occassional pain if I overdo it. I use tylenol and ice for pain when needed. I know I'll never be a walker and hiker like I used to be, but at least I can get around ok and I hope to do some trail riding with my tricycle. My leg is about 2.5-3 inches shorter than the other. I use an "Even Up" lift I bought on Amazon for my tennis shoes and My husband has been glueing soles of other shoes onto existing ones to build up the difference. He's done several pairs for me and he's become quite the cobbler. That makes a big difference to get my legs evened out pretty good. I have 3 other people I've connected with that also have a Girdlestone and we offer support to each other. It seems like in your case maybe finding a good physical therapist would help you. I'm a retired nurse and a firm believer in physical therapy....but it's a life long committment to do exercises at home. Wishing you wellness......Cindy

REPLY
@cmarsh

Hi Marty...I tried to check out the facebook account but nothing came up. Sounds like you and your wife lead a very interesting life. I'm in Michigan, USA. My husband and I were wintering in Florida last year when I ended up with an infection in my implant I'd had for 17 years. I didn't even know I had the infection until 5 days prior. Two emergency room visits, then shipped to University of Florida Shands Hospital where my surgery was done on an emergency basis. The plan was to put an antibiotic spacer in for a few months, then another hip, but when surgeon got in there the infection was so bad in my muscle and bone he couldn't do that. He said it was either amputate at the hip or remove as much infection as possible as well as implant and keep me on oral antibiotics after the IV antibotics for 8 weeks. I lost my vastus lateralis muscle, iliotibial band, and part of my gluteal muscle. All of it was dead and necrotic. The surgeon said it was too risky to ever put in another hip for me. I am so surprised at how well I am doing. I use a rollator walker in my home most of the time, but when I go out to dinner, shopping, etc, I use crutches. I'm transitioning from underarm crutches to forearm crutches and I can even get around quite well with just one crutch. I also practice in the house with just a cane and works pretty well for me. I can take 5-10 steps with nothing at all but it's a pretty gimpy walk. When it gets warmer out, I hope to spend more time practicing outside. I ride an upright exercise bike 10 miles a day and bought a tricycle too. My husband and I went out once to ride on a warm, but windy day and did 2.5 miles! I can cook, clean up, clean bathrooms and dust ok. I can't sweep the floors, but I'm working on that a little bit too. My husband and I love to fish and camp witch we did last year. We used our son's pontoon boat for fishing last year and I could get on that with my crutches just fine at the dock. This summer I will try to get in our bass boat! I think I can do it now. I spend a lot of time exercising to build up my Quadriceps and Gluteal muscles and do chair yoga also. I don't really have any constant pain, just occassional pain if I overdo it. I use tylenol and ice for pain when needed. I know I'll never be a walker and hiker like I used to be, but at least I can get around ok and I hope to do some trail riding with my tricycle. My leg is about 2.5-3 inches shorter than the other. I use an "Even Up" lift I bought on Amazon for my tennis shoes and My husband has been glueing soles of other shoes onto existing ones to build up the difference. He's done several pairs for me and he's become quite the cobbler. That makes a big difference to get my legs evened out pretty good. I have 3 other people I've connected with that also have a Girdlestone and we offer support to each other. It seems like in your case maybe finding a good physical therapist would help you. I'm a retired nurse and a firm believer in physical therapy....but it's a life long committment to do exercises at home. Wishing you wellness......Cindy

Jump to this post

Thanks for the reply Cindy. The physical therapist that I went to looked at the X-rays after my first session and told me she could not really help and I have become the talk of the clinic because they wonder how I can still walk.Beats the heck out of me but so far little pain and even have been spending 8 hours a day getting gardens ready and caring for our Gallery. I aim really interested in Robotic orthosis and my feeling is if I can take the pressure off the hip could even wait a while since my next move one of these days is also a trip to the emergency room and then they have to do something, I lived in Stuart, Florida for 18 years while I traveled back and for to South America. I'm a Connecticut Yankee that married a West Virginia girl 55 years ago. She rolled over one day and told me that she really wanted to get back to the mountains. My reply was over my dead body. Well here I am in the high mountain town of Davis, West Virginia. Have a great day, Marty the Gardener

REPLY
@mhard50

I have had a hip replacement that didn,t work. My whole leg got infected, they had to remove the prosthetics put in my hip. I,m now going on 6 years with just scar tissue in that hip area. I walk with a walker, and I have a limp but have not had any other problems. Thank GOD

Jump to this post

Does it still hurt to walk with a walker or does it get better? I just had an antibiotic spacer put in a week ago and I feel like I’m helpless because of the pain.

REPLY
@mhard50

I have had a hip replacement that didn,t work. My whole leg got infected, they had to remove the prosthetics put in my hip. I,m now going on 6 years with just scar tissue in that hip area. I walk with a walker, and I have a limp but have not had any other problems. Thank GOD

Jump to this post

Hi, your part was very encouraging to me. Can't you tell me when did you know it was time to start walking on your hip? Did you do it with PT at first? What does it feel like? About 6 months ago, my hip was permanently removed. When I put weight on my leg, I never know what I'm going to get. Sometimes it just feels spongy, sometimes it feels like it collapses, and sometimes it feels like there are a bunch of large rocks in there that my femur can't quite find a perch on. Thanks for sharing, Janeen

REPLY
@janeen17

Hi, your part was very encouraging to me. Can't you tell me when did you know it was time to start walking on your hip? Did you do it with PT at first? What does it feel like? About 6 months ago, my hip was permanently removed. When I put weight on my leg, I never know what I'm going to get. Sometimes it just feels spongy, sometimes it feels like it collapses, and sometimes it feels like there are a bunch of large rocks in there that my femur can't quite find a perch on. Thanks for sharing, Janeen

Jump to this post

Hi Janeen...I have been living without a hip for 21 months. I do daily exercises given to me by PT to strengthen my legs and I tend to spend time just standing, putting more weight on my affected leg to help build strength also. I use a walker in the home to get around and crutches when I go out. I can take a 10-15 steps with no aide at all. Sometimes it hurts afterwards, sometimes not. I do move about in the kitchen with just holding onto countertops, cooking and cleaning up. The past few months, I started using one crutch and the upright sweeper to vacuum the house. My husband was doing that before then. I'm riding an upright bicycle 4 miles a day. I was up to 10 miles a day, but I tore my meniscus in my good knee late summer, so it's been healing up and had to take it easy. The more exercises you do to get those quad muscles and buttock muscles strong, the easier it will be to walk with a crutch or a few steps with nothing. I'm hoping to eventually get to just one crutch or a cane all the time. I can go very short distances with that, but wouldn't trust myself outside, especially on uneven ground. I'm 71 years old in Michigan. If you are on Facebook, there is a good support group you can join if you want called "Hip Replacement Complication Forum" . I have met several other people living without a hip through this group and we offer each other support. Wishing you wellness....Cindy

REPLY
@cmarsh

Hi Janeen...I have been living without a hip for 21 months. I do daily exercises given to me by PT to strengthen my legs and I tend to spend time just standing, putting more weight on my affected leg to help build strength also. I use a walker in the home to get around and crutches when I go out. I can take a 10-15 steps with no aide at all. Sometimes it hurts afterwards, sometimes not. I do move about in the kitchen with just holding onto countertops, cooking and cleaning up. The past few months, I started using one crutch and the upright sweeper to vacuum the house. My husband was doing that before then. I'm riding an upright bicycle 4 miles a day. I was up to 10 miles a day, but I tore my meniscus in my good knee late summer, so it's been healing up and had to take it easy. The more exercises you do to get those quad muscles and buttock muscles strong, the easier it will be to walk with a crutch or a few steps with nothing. I'm hoping to eventually get to just one crutch or a cane all the time. I can go very short distances with that, but wouldn't trust myself outside, especially on uneven ground. I'm 71 years old in Michigan. If you are on Facebook, there is a good support group you can join if you want called "Hip Replacement Complication Forum" . I have met several other people living without a hip through this group and we offer each other support. Wishing you wellness....Cindy

Jump to this post

Hi there!
I've been without a hip since my last surgery in Aug of 22. This was due to an infection that was attracted to foreign material. I was on crazy antibiotics for about a year and a half. I just had my blood work and I finally am not showing any infection. I vacuum, work in my kitchen without any support. I'm still not able to sleep through the night due to pain but days aren't too bad.
My question is has anyone had a new hip Put in after not having one for a little over a year?

REPLY

My hip was removed October 2022 due to a severe bacterial infection.
I had an antibiotic spacer until this August when I got a new hip
So far no sign of infection
No pain
Have to do exercises and still be careful

REPLY
Please sign in or register to post a reply.