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.
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
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!
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!
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.
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?
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
@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!!
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
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?
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
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?
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?
@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!!
Gosh what an ordeal so glad u are getting better and admire u greatly for going 4yrs without hip ! My husband is currently going through something similiar on his 2nd spacer after his last hip was taken out due to staph infection which returned @fter getting all cleAr ! He also has diabetes #o thT complicates healing and on IV antibiotics for 10 weeks plus taking oral antibiotics also it’s been original hip replaced in 20045 awful hard but he is strong and resilient in July they hope to place another hip in all going well his
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?
Hello I'm in shock right now i have the exact same problem.Im still on antibiotics i just went on oral antibiotics and I'm glad that picc line is gone . So basically I'm trying to see how your doing?.Also did you ever get your hip?
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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
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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1 ReactionThanks 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.
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1 ReactionI 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
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
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
My left hip bone is imbused next to the adjoining bone - shown in the MRI plus X-ray.I m on chiropractic treatment n can walk with less pain
@dzoneill you can read more about @froggy1's story here: https://connect.mayoclinic.org/discussion/if-youre-living-without-a-hip-like-me-please-reach-out-to-me/
Gosh what an ordeal so glad u are getting better and admire u greatly for going 4yrs without hip ! My husband is currently going through something similiar on his 2nd spacer after his last hip was taken out due to staph infection which returned @fter getting all cleAr ! He also has diabetes #o thT complicates healing and on IV antibiotics for 10 weeks plus taking oral antibiotics also it’s been original hip replaced in 20045 awful hard but he is strong and resilient in July they hope to place another hip in all going well his
Hello I'm in shock right now i have the exact same problem.Im still on antibiotics i just went on oral antibiotics and I'm glad that picc line is gone . So basically I'm trying to see how your doing?.Also did you ever get your hip?