Walking without a hip joint

Posted by dzoneill @dzoneill, Mar 10, 2017

I am currently without my right hip because of infections in my hip replacements. I had both hips replaced my left in 2012 and my right in 2015 I unfortunately got infections after both hip replacements and have been in server pain since .My new consultant told me I needed a revision of both hips,so in early June I had the first stage revision of my hip done,one week later they felt it safe to put my hip back in when they did I got another infection in my hip. I had two washouts in a week followed by a 3 week course of iv antibiotics,two days after stopping the antibiotics my hip flared up again so my consultant took me back to surgery an removed all of the hip implants ,then started another 6 weeks of iv antibiotics.I have now been home for the past 10 days without a hip joint the day time is pritty much pain free but in bed at night is quite painfull,I have an appointment in mid October to see if my infection has cleared up and if it has they will make an other appointment for me to have my new hip joint put back in this will be the 3rd replacement on my right side.my hopes are that it will not get infected again and my recoveary will go well,when it is strong enough my left hip has to be revised.I am 44 years of age with 3 small kids and my hips problems have taken over my life in the past few years I have not worked in 5 years or even driven a car in the past 7 years,my original problem was I had AVN of both hips but my constant recurring infections have realy complated things.Any advice or peoplewith similar hip problems their advice would be appropriated.

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@hip2012

I am currently without my right hip because of infections in my hip replacements. I had both hips replaced my left in 2012 and my right in 2015 I unfortunately got infections after both hip replacements and have been in server pain since .My new consultant told me I needed a revision of both hips,so in early June I had the first stage revision of my hip done,one week later they felt it safe to put my hip back in when they did I got another infection in my hip. I had two washouts in a week followed by a 3 week course of iv antibiotics,two days after stopping the antibiotics my hip flared up again so my consultant took me back to surgery an removed all of the hip implants ,then started another 6 weeks of iv antibiotics.I have now been home for the past 10 days without a hip joint the day time is pritty much pain free but in bed at night is quite painfull,I have an appointment in mid October to see if my infection has cleared up and if it has they will make an other appointment for me to have my new hip joint put back in this will be the 3rd replacement on my right side.my hopes are that it will not get infected again and my recoveary will go well,when it is strong enough my left hip has to be revised.I am 44 years of age with 3 small kids and my hips problems have taken over my life in the past few years I have not worked in 5 years or even driven a car in the past 7 years,my original problem was I had AVN of both hips but my constant recurring infections have realy complated things.Any advice or peoplewith similar hip problems their advice would be appropriated.

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@hip2012, thank you for finding the discussion on walking without a hip joint and sharing your story. Also, welcome to Connect! It sounds like you have had quite the frustrating journey in recent years, I hope that this most recent battle with infections goes more smoothly and you can get your hip back in.

I would like to invite back @dzoneill back to this discussion as the original poster looking to also Connect with someone who does not have a hip joint. Dzoneill may have some advice on how to deal without having a hip joint.

@hip2012, you mentioned your original problem was AVN, if you are comfortable, would you mind sharing what that is and a bit more about that?

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@JustinMcClanahan

Hello @dzoneill, and welcome to Connect.

Would you mind telling us a bit more about your question? We have a lot of members who have discussed having hip issues or replacements, but I have not come across the question regarding lack of a hip joint. Is this from an injury, surgery, or other medical issue?

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Yes I don’t have a spacers or hip either. And still have the infection. I think it it’s staff what antibiotics work for you. I had 14 surgery a,nd my last one was called girelstone procedure. I have. 7 pic lines. I am walking on crutches.

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I had a total hip replacement 12 years ago after 5 years it got infected.I had 2 surgery trying to clean it but had to get it taken out. Had 7 spacers put in and 7 pic lines 14 surgery in 3 years altogether and around 7 different antibiotics.The infection is still there it comes out like a faucet threw a little hole in my hip. Fan you tell me what antibiotics work for you?They have mention amputation once or twice but I won’t do it.I am walking on crutches and my leg feels like it is getting stonger just need the infection to go away.

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@kenman

I had a total hip replacement 12 years ago after 5 years it got infected.I had 2 surgery trying to clean it but had to get it taken out. Had 7 spacers put in and 7 pic lines 14 surgery in 3 years altogether and around 7 different antibiotics.The infection is still there it comes out like a faucet threw a little hole in my hip. Fan you tell me what antibiotics work for you?They have mention amputation once or twice but I won’t do it.I am walking on crutches and my leg feels like it is getting stonger just need the infection to go away.

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Wow! You have been through a lot. I’ve had 4 surgeries in the past year. A few PICC lines. One spacer. One of the surgeries was to remove pelvic and femur bones because my doctor thought the infection was in the bone, which is why it came back. Anyway, the antibiotics I used were vancomycin (IV) until I had a severe allergic reaction, then they switched me to daptomycin (also IV). After a few weeks of that I switched to oral doxycycline which I am to take forever. Suppression therapy they call it. It took about 5 months after the last surgery for the hip wound to heal and stop draining. After the 3rd surgery they used a wound vac to help it heal, but I don’t think it really did that much after a certain point. Probably because there was still infection. I hope you get some resolution to the infection.

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@kenman

I had a total hip replacement 12 years ago after 5 years it got infected.I had 2 surgery trying to clean it but had to get it taken out. Had 7 spacers put in and 7 pic lines 14 surgery in 3 years altogether and around 7 different antibiotics.The infection is still there it comes out like a faucet threw a little hole in my hip. Fan you tell me what antibiotics work for you?They have mention amputation once or twice but I won’t do it.I am walking on crutches and my leg feels like it is getting stonger just need the infection to go away.

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PS. They’ve mentioned amputation to me as well, but not because of infection, because of a damaged femoral artery. Not fun to think about that. 🙁

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@kenman

I had a total hip replacement 12 years ago after 5 years it got infected.I had 2 surgery trying to clean it but had to get it taken out. Had 7 spacers put in and 7 pic lines 14 surgery in 3 years altogether and around 7 different antibiotics.The infection is still there it comes out like a faucet threw a little hole in my hip. Fan you tell me what antibiotics work for you?They have mention amputation once or twice but I won’t do it.I am walking on crutches and my leg feels like it is getting stonger just need the infection to go away.

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To geek girl thanks for the information I was on vancomycin for a long time too I am going back to the clinic next week maybe they will.give me something that works this time

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@joanieike

I had bilateral hips replaced in 2013. I have MS and have had a lot of IV steroids. Consequently I developed AVascular Necrosis in both hips.
In Feb 2016 my rt hip began to be very painful to walk on. After 4 months they discovered I had a prosthetic joint infection and over 45,000 WBC in the fluid around my hip. The infection was a progeria bacteria (?).
Anyway my hip was removed in Feb 2017 and I have been without a hip ever since. I had 12 weeks of IV antibiotics and am using 30% weightbearing on walker and a wheelchair.
My infectious disease doc wants me to wait a whole year before they put the new hip back in because of the amount of infection they found when removing the replacement. I also lost muscle, tissue and bone during the surgery because of necrosis.
My muscles have atrophied so much and I can no longer lift my leg when sitting or lying down.
I am really worried about being able to walk again as well as getting another infection.
My family is amazed that I can walk with only an antibiotic spacer.
What are the chances of reinfection? How much function will I get once I finally get a new hip in 2018.
My CRP levels were never elevated until after the surgery although my sed rate was high (which is what led my doc to think I had a PJI).
I will be getting anothe fluid aspiration in Jan or Feb 2018. Until then…I wait and I pray!

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I had 4 failed replacements due to infection and when I finally went to mayo they took my hip out and said I needed to leave it out for at least a year . . ..obviously no one wants to hear that but my surgeon said you will know when its time….I made it 4.5 years without a hip (nothing not even a spacer) and when I went back for my 5th replacement last June it was successful (so far lol)
It was a rough 4 years but I knew the longer I waited the greater my chance would be that I wouldn’t get infection and so far it has worked. So I encourage you to wait as long as you can….it won’t be easy…but in the end may prove to be your best decision!! Good luck! I will keep you in my prayers!

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Thanks it’s been interesting to read these. My husband has osteosarcoma in his left hip and sacrum. It sounds like his surgery will be very similar. The surgeon said he can take out all the bone on the left side and do a resection without losing the leg . He did not mention putting in replacements so I don’t think that would be planned (only met once with him). After scans in Dec from chemo we are to reevaluate if it’s time for surgery. So should know more then. This has been helpful as realistically I wasn’t sure what the mobility and rehab really looked like.

Cyndi

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@JustinMcClanahan

Hello @dzoneill, and welcome to Connect.

Would you mind telling us a bit more about your question? We have a lot of members who have discussed having hip issues or replacements, but I have not come across the question regarding lack of a hip joint. Is this from an injury, surgery, or other medical issue?

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I had the same girelstone procedure in October 2017 and am now also walking with crutches.. Does your leg pop or grind where the joint use to be when you move your leg? Mine does and it hurts so bad! Ive also lost alot of muscle mass since my surgery but when i try to walk my leg just will not hold the weight and gives out on me

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@lynzze

@dzoneill I am sorry to hear of your situation and I can totally relate to your situation however mine came in a different form. In 2005 I was in a head on collision with a semi which caused my left hip to dislocate (along with numerous other traumatic injuries) they were able to put my hip back into place without surgery however a couple weeks later when doing physical therapy it became dislocated again. So the decision was made to put hardware in to try and stabilize it from dislocation, which worked until my femoral head became necrotic a year later . At that point they decided to do the first THR …it was great …but it only lasted two weeks and then I got Staph infection and it had to be removed. So then they put in a concrete hip spacer.. Needless to say we went back and forth like this 4 times over the course of 7 years …everytime they put in a new hip I would eventually get MRSA/staph and they would remove it. Finally when hip replacement 4 became infected I was referred to Mayo Clinic .
Their recommendation was to take everything out and leave it out for at least a year. If I could go at least one year without infection they would try one last hip relplacement .
It was a long recovery process plus learning how to walk with a hanging hip but i actually stunned doctors a year later when i was walking without any assistive devices (i probably shouldve been using my cane at least lol) of course I had a major limp since my left leg was so much shorter but i made it work not only for one year but for 4 years!
Finally last year I went back and told them it was time, my lower back had been killing me so bad from my uneven gait.
June 6th I recieved my “Hail Mary” 5th total hip lol and I am so happy to say that so far (fingers crossed) i havent had any problems with infection. Im only 34 years old so I know its a life long battle but at this point in time thing are looking up!!

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How long did you say it took you to walk again without the hip joint? I just had my surgery in October 2017 to take out the femoral head and about an inch of the femur itself due to a bone infection and since i dont have insurance cant get the replacement surgery but i want to be able to walk so bad its killing me and you are the first person ive heard of that was actually able to walk without the hip joint. My leg just gives out when i try to bear weight but that could be because i just had surgery three months ago lol

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@JustinMcClanahan

Hello @dzoneill, and welcome to Connect.

Would you mind telling us a bit more about your question? We have a lot of members who have discussed having hip issues or replacements, but I have not come across the question regarding lack of a hip joint. Is this from an injury, surgery, or other medical issue?

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Well this is very interesting, considering I have been a member of this forum for at least 5 months and have been looking for someone, like me who is living without a hip joint. I have found no one until just now. Everyone else is living with a spacer and awaiting a 2 stage or living without a hip until their staph infection is gone. February will be the one year mark of having no hip joint. My whole saga should be on this site somewhere. Maybe you could try to find it and contact me and then we can share some advice on how we’re both getting around. That would be great. It’s been a long day of pain and I can’t sit in this chair anymore but please, do get back to me. I’m actually very excited to find someone without a hip like me. Robin

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