1. < Bones, Joints & Muscles

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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Cindy | @cmarsh | Mar 20 10:50am
In reply to @rickyp1 "Hi. I am living without a hip. I am 73 years old. I had chondrosarcoma cancer..." + (show)
@rickyp1

Hi. I am living without a hip. I am 73 years old. I had chondrosarcoma cancer in my hip and pelvis. It was stage 2. Last Feb I had a 14 hour surgery to remove it. I now have an 8 inch cavity where my hip was. It was a very tough year with very bad pain and no walking for 3 months. I am now cancer free for 13 months. For the past 7 months I use a walker and wheel chair. I exercise my leg daily to regrow muscle tissue. My femur bone has now moved up 2-1/2 inches so I wear a custom shoe. I am moving on the walker better and better and have almost gotten off the wheelchair. There is still discomfort because the femur has moved up into muscle and nerves. The area feels packed but it is slowly getting better. I also have a lymphedema fluid problem so I get medical massage weekly to help move it. I am now practicing walking with 2 canes and can go about 60 feet. My goal is to walk with just a cane by this fall. It is a long journey but you have to determined. This is a 3 year recovery. I live my life, get out to diner, visit friends and family. I’m about 80% back so I am ahead of what the doctors told me. Be strong and determined and you’ll get there. God bless you.

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I loved reading your story and determination to make the best of life. I am 72 and also living without a hip for the past 2 years and work daily towards my goal of walking with just one cane one day. Keep up the great job you are doing an God Bless You!!!

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2 replies
rickyp1 | @rickyp1 | Mar 20 12:30pm
In reply to @cmarsh "I loved reading your story and determination to make the best of life. I am 72..." + (show)
@cmarsh

I loved reading your story and determination to make the best of life. I am 72 and also living without a hip for the past 2 years and work daily towards my goal of walking with just one cane one day. Keep up the great job you are doing an God Bless You!!!

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Hi Cindy. Thank you for replying. I know you have suffered much. This is a tough thing to get through. Has your femur moved up to your ilium bone? I’m struggling with that. Thanks

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1 reply
jennycyprus | @jennycyprus | Mar 21 7:01am

Hi - I live in the UK and have just been told that after waiting a year - having had the Girdlestone procedure - that I won't be getting a new hip as its too risky. As I'm determined to walk with one stick eventually, I've enquired about having a brace fitted...like the ones people had to wear after polio. Has anyone ever had a brace fitted to help them walk? I've been referred to my orthotics dept so that I can have my already raised shoe made higher, but would like to go armed with some information. I'm 77 and not in any pain for which I'm very grateful. Thanks

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1 reply
Cindy | @cmarsh | Mar 21 11:59am
In reply to @jennycyprus "Hi - I live in the UK and have just been told that after waiting a..." + (show)
@jennycyprus

Hi - I live in the UK and have just been told that after waiting a year - having had the Girdlestone procedure - that I won't be getting a new hip as its too risky. As I'm determined to walk with one stick eventually, I've enquired about having a brace fitted...like the ones people had to wear after polio. Has anyone ever had a brace fitted to help them walk? I've been referred to my orthotics dept so that I can have my already raised shoe made higher, but would like to go armed with some information. I'm 77 and not in any pain for which I'm very grateful. Thanks

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You are a warrior Jenny....keep up the good work!!!

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1 reply
Cindy | @cmarsh | Mar 21 12:16pm
In reply to @rickyp1 "Hi Cindy. Thank you for replying. I know you have suffered much. This is a tough..." + (show)
@rickyp1

Hi Cindy. Thank you for replying. I know you have suffered much. This is a tough thing to get through. Has your femur moved up to your ilium bone? I’m struggling with that. Thanks

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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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1 reply
jennycyprus | @jennycyprus | Mar 21 1:20pm
In reply to @cmarsh "You are a warrior Jenny....keep up the good work!!!" + (show)
@cmarsh

You are a warrior Jenny....keep up the good work!!!

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Thanks Cindy - you always encourage me!

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patenelson | @patenelson | Apr 17 6:17am

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

REPLY
2 replies
gmom14 | @gmom14 | Apr 18 11:14am
In reply to @patenelson "Hi, this is Faith. I had a replacement in 2021 and with in a month ended..." + (show)
@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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So sorry for your suffering...may the doctors find a way to bring relief...God bless you!

REPLY
1 reply
patenelson | @patenelson | Apr 18 11:34am
In reply to @gmom14 "So sorry for your suffering...may the doctors find a way to bring relief...God bless you!" + (show)
@gmom14

So sorry for your suffering...may the doctors find a way to bring relief...God bless you!

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I feel our Lord has a reason and a journey for me to take. Hope He is about ready for me to get back together, waiting on testing now, possible new hip coming my way. If not I'll keep fighting to be strong 😁

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patenelson | @patenelson | Apr 18 11:41am
In reply to @cmarsh "I loved reading your story and determination to make the best of life. I am 72..." + (show)
@cmarsh

I loved reading your story and determination to make the best of life. I am 72 and also living without a hip for the past 2 years and work daily towards my goal of walking with just one cane one day. Keep up the great job you are doing an God Bless You!!!

Jump to this post

Cindy and Ricky,
My journey has been 3 yrs so far. I've gone from bed , couldn't do a thing, to where I'm at today. I know it's very painful and we all struggle. I've fell a few times, periods of nausea due to my strong antibiotics.
With that said, don't give up! I'm now walking with one forearm crutch. Much better at keeping you balanced. Got my set from Amazon.
Prayers for pain relief and guidance. Faith

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