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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@pdtsomerset

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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Yes but difficult & frustrating that u can't do as much as I could.. how do u manage on a daily basis u on 2 crutches or 1.. do u have a built up hell on your shoe

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@pdtsomerset

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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Similar story here. Girdlestone in 2018 - still adjusting but overall doing well. Pls reach out if you have any questions. Stay strong.

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@koala78

Similar story here. Girdlestone in 2018 - still adjusting but overall doing well. Pls reach out if you have any questions. Stay strong.

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Ah thank you, I battle on but gets me down that can't do all I could and having to depend on others, I can manage on the 1 crutch but can't walk any distance before am mentally and physically exchausted

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@s77

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

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I am living without a left hip a little over 2 years. I'm so sorry you've had to go through this at such a young age. I'm 72 and get around on 2 crutches, sometimes only one crutch for short distances, also use a walker and wheelchair at times. I agree it is so life altering! The only real exercise I can do now is exercise bike, which I do daily, but I sure miss not hiking and really walking! May I ask how you get around? Wishing you all the best! Cindy

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@cmarsh

I am living without a left hip a little over 2 years. I'm so sorry you've had to go through this at such a young age. I'm 72 and get around on 2 crutches, sometimes only one crutch for short distances, also use a walker and wheelchair at times. I agree it is so life altering! The only real exercise I can do now is exercise bike, which I do daily, but I sure miss not hiking and really walking! May I ask how you get around? Wishing you all the best! Cindy

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Hi Cindy, I get around on 1 crutch around the house and to walk a short distance but it leaves me physically exchausted if I was to walk round tesco on the 1 crutch, if was out with my partner for a walk or shops I use the 2 crutches.. I manage but can get yeah down not been as independent as I would have been..

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@s77

Hi Cindy, I get around on 1 crutch around the house and to walk a short distance but it leaves me physically exchausted if I was to walk round tesco on the 1 crutch, if was out with my partner for a walk or shops I use the 2 crutches.. I manage but can get yeah down not been as independent as I would have been..

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R they going to try again with u at any stage

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@s77

R they going to try again with u at any stage

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The surgeon said at the time, I must have had the infection for a long time.....like a year or more and unaware of it. My Vastus Lateralis, Iliotibial band and part of my glute was all nerotic and he had to remove it and infection had also gone into the femur and pelvis bones (Osteomyelitis). During surgery he had to make a decision to amputate my leg or remove as much infection as possible along with the joint and see how I did. He advised me to never try for a revision as the risk was too great for infection and I have chronic osteomyelitis. This all happened in Florida while we were wintering there. My surgeon in Michigan said he could do a revision, but he said I may end up a lot worse than I am now with pain and infection. My infectious disease Dr said he wouldn't advise any surgery for at least 5 years. I doubt I'll ever try for another hip and pretty much resigned myself to this way of life. I can still drive and get around, just very slow and I tire easily if too active, but I keep pushing myself as much as I can.

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@cmarsh

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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Hi Cindy,
It sounds like you are doing very well getting around. I would love to be able to manage on crutches and then progress to a rollator.
I also like the notion that exercising to improve strength is my job. That is a very practical mindset that I'm going to incorporate into my lifestyle.
I have home PT and we are working on my goal to be able to get to my yard so I can be outside & not feel so cooped up in the house. I got a walker with arm platforms to help take the pressure off my wrists. I have RA and my hands/wrists are affected. I also have forearm crutches so I'm going to ask my PT to work with me using them. My leg length discrepancy made it too difficult to use an under the desk bike, but I found a seated elliptical works well so I get some leg/ankle/foot motion.
Your progress is an inspiration to me. Thank you for sharing your story & giving me some great ideas.
Wishing you the best in your continued progress.
Melane

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@melzino

Hi Cindy,
It sounds like you are doing very well getting around. I would love to be able to manage on crutches and then progress to a rollator.
I also like the notion that exercising to improve strength is my job. That is a very practical mindset that I'm going to incorporate into my lifestyle.
I have home PT and we are working on my goal to be able to get to my yard so I can be outside & not feel so cooped up in the house. I got a walker with arm platforms to help take the pressure off my wrists. I have RA and my hands/wrists are affected. I also have forearm crutches so I'm going to ask my PT to work with me using them. My leg length discrepancy made it too difficult to use an under the desk bike, but I found a seated elliptical works well so I get some leg/ankle/foot motion.
Your progress is an inspiration to me. Thank you for sharing your story & giving me some great ideas.
Wishing you the best in your continued progress.
Melane

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Hi Melane.....getting outside is definitely a goal to work towards! My hands and wrists were very sore in the beginning with broken skin, numbness and tingling (ulnar nerve entrapment) but I got exercises to do for that and as you start putting more weight on your legs and less on your hands and wrists, my symptoms went away. Maybe took a year for that to get better. My husband makes my shoes for me with a 2-3 inch leg length difference. He glues soles from one shoe with a flat flip flop in between to build up the shoe for me and works very well. Much cheaper than paying $200 to have one made for you, in my opinion. I have about 10 pairs of shoes/sandals I can wear now. Keep up the good work and wishing you continued success! Keep in touch to let me know how you are doing. There is a way you can send a private message on this forum too if you want to chat that way. Whatever works! Have a great day!......Cindy

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