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

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My one forearm crutch, working on my flowers

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@patenelson

Hi, this is Faith.
I had a replacement in 2021 and with in a month ended up in ER with the incision open and an infection. It's called micro bacterium absessus nontuberculosis . Very rare and very painful. After 2 surgeries, the 3rd was to pull all invasive hardware from my hip, which the infection was attacking. I came off of antibiotics last October for the first time. I find it easier to walk with forearm crutches when out and about. I drive, do my housework. This summer I'm getting back into my plants.
For Pain, it's constant and a lot worse at night.
Newest MRI now shows inflammation almost to my knee and likely infection called osteomyelitis. Waiting on scheduling for testing to see.
The day pain I tell myself is due to my pushing to be as good as I can.
Just keep pushing, have Mri's to confirm what's going on.
I'll keep you in my prayers, Faith

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Hello Faith...I'm so sorry you are having a lot of pain. Osteomyelitis means that the infection is now in your bone and this is serious. I hope you are on antibiotics again and getting labs, testing and seeing Orthopedic Surgeon and Infectious Disease Doctor right away. Are you in the USA? Praying you can get some answers quickly and under good medical management and pain relief.

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My husband spent his first year of this journey of prosthetic hip infection with nothing but pain, antibiotics (some very strong and expensive) and disappointment. The second year began finally off antibiotics completely, but still blood tests for possible return of infection. The third year began with installation of an antibiotic spacer on March 7. At his 6-week post operative checkup, the orthopedic infectious disease has discharged Bill from his care unless he has complications. His amazing surgeon has given him clearance from all restrictions so he can start to build the strength in that leg and hip. He is off all antibiotics and pain medication. He will keep this spacer until it fails or loosens; then they will put in a permanent hip. We cannot say enough good things about Mayo Clinic in Rochester, MN. It has been a long road. We have learned perseverance and persistence. Any time you deal with infection it will be a LOOOONNG road. My advice to everyone is to seek a second opinion as soon as things start going bad. The surgeon was able to get all the length back during this surgery and remove the scar tissue (almost 2 hours of extra surgery time for scar tissue).
This is not the end but finally this third year things looking positive.
Prayers to all of you that you can find pain relief and expert health care to heal. Lori

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@cmarsh

Hello Faith...I'm so sorry you are having a lot of pain. Osteomyelitis means that the infection is now in your bone and this is serious. I hope you are on antibiotics again and getting labs, testing and seeing Orthopedic Surgeon and Infectious Disease Doctor right away. Are you in the USA? Praying you can get some answers quickly and under good medical management and pain relief.

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I've always thought the pain was because I was working the leg too hard! Drs didn't tell me I shouldn't be in pain until we started a journey to put my hip back together. Having biopsy on the femur April 30th.
God's got a plan, we'll just have to wait until he unveils it.
Thanks for your support!!

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@foxden6

My husband spent his first year of this journey of prosthetic hip infection with nothing but pain, antibiotics (some very strong and expensive) and disappointment. The second year began finally off antibiotics completely, but still blood tests for possible return of infection. The third year began with installation of an antibiotic spacer on March 7. At his 6-week post operative checkup, the orthopedic infectious disease has discharged Bill from his care unless he has complications. His amazing surgeon has given him clearance from all restrictions so he can start to build the strength in that leg and hip. He is off all antibiotics and pain medication. He will keep this spacer until it fails or loosens; then they will put in a permanent hip. We cannot say enough good things about Mayo Clinic in Rochester, MN. It has been a long road. We have learned perseverance and persistence. Any time you deal with infection it will be a LOOOONNG road. My advice to everyone is to seek a second opinion as soon as things start going bad. The surgeon was able to get all the length back during this surgery and remove the scar tissue (almost 2 hours of extra surgery time for scar tissue).
This is not the end but finally this third year things looking positive.
Prayers to all of you that you can find pain relief and expert health care to heal. Lori

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Lori...this makes me so happy to read how your husband is doing and off pain meds too!!! I didn't realize they could leave the spacer in inefinitely, such wonderful news! I'll be praying for continued success for him and would love to keep in touch. Maybe he can teach me a few things!!! Cindy

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@cmarsh

Hi Ricky....yes my femur has moved up causing my leg to be 2.5 to 3 inches shorter. I never had a professional shoe made, but my husband has made them for me by glueing soles from one shoe onto another, with some silicone in between. He's done very well with this and I have about 10 pairs of shoes! Haha! I do daily strengthening and stretching exercises for my legs and feel this is very important. My husband used to stretch my leg for me, by pulling down gently on it while laying on the bed, but I figured a way to do it with my other foot to pull down and stretch it. I have built up a lot of scar tissue in that leg and want to keep it pliable so to speak???? Due to severe infection at time of surgery, they also had to remove my vastus lateralis muscle and iliotibial band due to muscles necrosis. Anyway, I'm pleased with how well I am doing overall and grateful not to spend the rest of my life in a wheelchair or be in constant pain! I'm still noticing things I can do while exercising that I couldn't do 2 months ago. Wishing you continued wellness!!!! Cindy

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Hi Cindy,
I had my 3rd or 4th hip prosthesis removed in Aug 2023. I'm not a candidate for any further replacements so I'm learning to live without a hip. I've been mostly using a wheelchair and a walker,occasionally, to practice in the house.
I'm wondering what you are using in the way of assisting devices since you are not in a wheelchair.
Blessing on your healing journey.
Melane

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@melzino

Hi Cindy,
I had my 3rd or 4th hip prosthesis removed in Aug 2023. I'm not a candidate for any further replacements so I'm learning to live without a hip. I've been mostly using a wheelchair and a walker,occasionally, to practice in the house.
I'm wondering what you are using in the way of assisting devices since you are not in a wheelchair.
Blessing on your healing journey.
Melane

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Hi Melane....I'm so sorry you have had to go through so many revisions and still lost your hip. My surgeon told me right from the start that I was not a candidate for revision, so I've never really looked into doing so. Perhaps since I have only been opened up once to remove the metal hip, it has helped me to heal better??? I have no idea really. I was in hospital for 3 weeks after surgery and they actually taught me how to go up and down steps before I left hospital with just one crutch and handrail. When I had home physical therapy, I started using crutches part of the time along with the walker and wheelchair. I'm kind of determined at 72 NOT to use a wheelchair except for when I have to go really long distances, like a stroll in the park or a large department store, etc. I figured if I live to real old age, I will eventually be in a wheelchair. I pretty much use a 4 wheel rollator with seat at home as it's easy to get around and carry stuff on the seat, but when I go out, I use crutches. I started with under arm crutches and finally went to the forearm crutches. I can walk short distances in the house with just a cane and when in the kitchen, I just hold onto counters to get around and I can take 5-10 steps without any aid at all. I spend a lot of time on exercising to keep BOTH my legs strong on a daily basis by doing two 30 minute sessions and I also ride an upright exercise bike twice daily for a total of 8-10 miles. My Girdlestone leg seems very strong right now and my only probablem is the pain in my "good Right knee", from a torn lateral meniscus and severe arthritis. I'm going to start a series of HA gel injections next week and my Ortho measured me for a custom fitted 'off loader knee brace' for my Right knee to use on and off. Are you following an exercise program daily? I think that is the most important thing to do for the best outcome. I know it's a pain, but I look at it as my "job" and I have to do it. I was an avid treadmill user for 30 years and walking, hiking was my favorite pastime. If you want to chat more, please feel free to reach out. Wishing you the best of luck on this journey to walk again!

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I am 47 and living with no right hip since 2018.. I have had 5 replacements to which all got infected 1st was in 2010.. taken out never to be replaced in 2018

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I am 47 living with no right hip since 2018.. changed my life completely

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@s77

I am 47 living with no right hip since 2018.. changed my life completely

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Hi s77
I too lost my right hip in 2018 due to multiple infections. And yes it is life changing in all aspects of life. We keep going and giving up is not option. We keep plugging along.

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