If you're living without a hip like me, please reach out to me.....

Posted by Anonymous122054 @anonymous122054, Nov 28, 2017

Hello. I’m a 52 year old Female living in Seattle Wa. Last Sept I had a THR which was going well at first but at 3 weeks I dislocated it. E.R. popped it back in and 2 weeks later it dislocated again. I had to wait until the second week of Dec. for the revision. Because On Dec 5th I had breast cancer surgery. (when it rains, it pours) and Dec 12th I had the revision. Dec 19th I had a fever of 104 and went to the ER. They sent me to the hospital where I had the hip surgery and 12 hours later was told I had an infection and that the hip needed to come out. They put in a spacer and a new piece in my femur and told me when the infection was gone that they would put in a new THR. I was in the hospital the week of Christmas and had to do the IV infusions for 7weeks. I lived alone except for a 1 1/2 y.o. boxer dog who I had rescued between dislocations. I already have severe depression and anxiety along with PTSD so this whole ordeal was more than I could handle. My surgeon (I found out later) was a huge ass who didn’t give a crap about me (or anyone who wasn’t him) and lied to me about several things, including trying to convince me that I could live a normal life with the temporary hip. I knew that was impossible because the pain from the spacer was horrible and later found out that the pain was caused by the spacer shifting because he didn’t use enough cement to hold it in place. I wanted a new surgeon and had to fight with his office to get someone else to replace the hip. I met with the new surgeon (who is great) the day they were pulling out the PICC line and we talked about the following month of checking my blood and my hip fluid before proceeding with the new hip.The PICC line came out and 6 days later I was back at the ER septic and close to death because the staph infection wasn’t gone. The next time I saw my new surgeon he was leaning over me in the ER saying ” I’m sorry but I have to remove the whole thing and after that you’re done. He cut me open and I had a pus pocket the size of a football that exploded when he cut me. I spent another week in the hospital and had another 7 weeks of the PICC line and IV infusions. I spoke to the surgeon while still in the hospital and he said he could “attempt” a 2 stage surgery when the staph was gone. I opted out. I felt that 4 surgeries was way too much for me (5 if you count cancer). I had to move from where I was living in 30 days and am currently renting a room 50 miles from Seattle where I know no one. I still have the dog (she’s the only reason I made it this far). and with the rent in Seattle going through the roof, I can’t even afford a room for rent so I’m trying to find a live-in caregiver position that I could trade for rent. It’s been a really long year and I’m still trying to comprehend the fact that I’ll never be the same. I was living on a horse farm before the surgery, trading work for an apt. on the farm. I loved it more than I ever thought and was hoping to get this hip done and find another farm to live on. That will never happen now because I can’t risk being knocked over. I had a house cleaning business (no employees, just me) for 25 years and I can’t do that anymore either. I’m going crazy with boredom and don’t know what to do with myself. I’m still on painkillers twice daily and to keep the pain somewhat at bay can’t drive too much or stand, sit, walk or lay down for too long. I would love to hear from people who are also living without a hip to share thoughts or ideas about a common situation. No one I have spoken to, including surgeons, physical therapists and the like knows anyone living without a hip. My friend found this site for me. Please reach out to me. I think it would help me to know I’m not the only one. Thank you, Robin

Interested in more discussions like this? Go to the Bones, Joints & Muscles group.

@nohip2020

I am so excited to have found all of you living the same situation / nightmare I am. Not that I want anyone else to have to live like this oh, but just gives me hope, makes me feel better then I'm not the only one. My doctor never told me about a spacer, he's not a very nice doctor and told me after he took my last replacement out that he would not work on me again that I will need to learn to live without the hip that happened at this time last year. Then went through 6 months of intensive home health, after going through a month-and-a-half of rehab. That was all this time last year, so I've been on a walker since then I have a daughter in kindergarten one in middle school and one in high school and it's been really tough on them also. I'm so glad to have found all of you. Please any of you that read this and want to talk, reply back to me. thank you all so much for sharing your stories I don't feel as alone anymore! God bless all of you and hope you're all doing much better!

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Would love to connect with you to compare – my email is noted in this thread.

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@koala78

You’ve found another one hip wonder. No hip since dec 2018. 13 hip surgeries- 3 separate bouts of different infections plus dislocations. How r you doing now? Oh i’m 55.

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Hi so how has it been walking with no hip ? How was it to start off with ? Can you get around ok ?
I have had 6 hip replacements , 6 dislocations , and now 2nd infection . They are re testing and I’m hopeful , if none I’ll have a capitulation done to keep ball in …
I’m struggling to comprehend how no hip thing works
What have you learnt
Thanks ang

REPLY

Hi my name is angela I am 53 years . Early fourths I had 2 hip replacements two years apart and had no issues with these for a few years enjoying life . I had a fall 7 years ago and that’s when my problems started , I broke my elbow but I knew something had happened to my hip as I could not put any weight on it . I kept getting told after the x Ray at hospital that my hip was fine ! So went home and I slowly started getting around a bit but with lots of clunking and then pain started creeping in so I went back to our health provider ( acc ) and pushing after finding they had actually x rayed wrong leg ! So I went had x rays on right leg , then ultra scan .then mri , then finally a bone scan which found the pin had shifted and was hitting the cup . .so I would need to see a surgeon who had good experience and specialises in revision . So after battling our acc provider they agreed to pay for the operation , so I finally had this done and all seemed well till I got home . The first few days I ended up back in hospital first with huge pain and a mass on my thigh ? Second time I was viliantly sick vomiting . I had some blood tests sent to lab to get tested , although I slowly got better I had huge pain in my bum and getting in out of bed was very hard , let alone normal stuff . So I went back to my surgeon And explained this and what happened earlier with 2 hospital visits . His reply was your only 6 weeks post op there is a lot of healing to go , keep doing physio . He did however sent me to get some blood cultures done ( never got and results given to me ) so of I went thinking let’s get back to getting stronger but alas as the months went by the pain was becoming unbearable my leg was swollen and jelly like to touch . So had 2nd opinion he sent me to get a aspiration done at the same time as putting in cordazone , so for a couple months and things eased , but I Never got the results of the cultures that was taken in aspiration ( approximately 60 mls ) I did get a letter saying hip was fine etc etc and nothing on results !
So I kept pushing and finally saw a back specialist and he sent me for a mri and that came back with two huge sists in and around my hip and that he thought I had a infection …..a little shocked of I went back to surgeon and he organised a aspiration and that did come back with a low grade bacteria but a very tricky one . So I then got booked in for the two phase hip operations , so my whole implant that was infected comes out , they pickle me /flush with antibiotics and clean Out as much infection as they can . I can say I was on re overly for 6 hours after that op I felt I had been run over by a bus , truck and train .A pick line was put in so antibiotics was administered everyday ,I was up and about and home in 5 days . All was going ok till 2 weeks and I dislocated ( the pain was horrific never ever have I felt so much pain ) the worst part is when they move you from bed to bed excruciating ! Hip was put in in theatre and stayed one night . The fear of this coming out was so scary I barely moved , I got home feeling very insecure . I had a health nurse come change the bottle for antibiotics everyday that happened for 6 weeks . Then 5 days later out I dislocated again omg so painful , I stayed this time 5 days in hospital as I had rung my surgeon and he said he would organise a hip brace and until that was fitted to stay put . Now this time my hip was so loose I was really afraid to move , the surgeon said once the infection has gone we will put in custom made implant , but that was 6 weeks away . I was crying all the time and then realised I needed to see someone and I was told I had ptsd and given medication to help . Finally had next operation and thought this was it but after a month I dislocated and then 3 months later . Because I Had the infection for two years inside me it left large sist like tumours That had grown and damaged my muscles in thigh and buttocks , and because of this the hip had a lot of space to come out ! So my surgeon said I’ll try lengthen leg a little and try elevate to push further into cup and in theory should help it stay in . I was going great guns walking and working on getting stronger and getting my muscles strong and I really felt this was happening. But 9 months later at a friends daughters 21st I stepped back and out she came out the front , I actually fainted in pain on that one , unfortunately we had ambulance people who were not listening to my husband who has been around every time I have dislocated and finally after lots of pushing I was sent to Tauranga hospital by chopper . Then I had a horrible doctor that bullied me to let him try put in and he tried twice and did not succeed ! I was then admitted and would go Into theatre first up on the next day . My body was shaking so much from his attempts and I had massive bruising that came out over the week . Traumatic experience that one was…so number 5 . So get told I had to class that as my 1st as was from 3 rd op ? Whatever ! So again the slow build up again but whereas I bounced back pretty good , but alas 6 months later she came out again that was 3 weeks ago now I feel it has loosened and pain in whole hip area and thigh ? I had a aspiration done and a few days ago saw surgeon and he said it looked like my fluid samples came back with two types of bacteria ! We are doing another one to be sure as the infectious disease people couldn’t say 100% . So I went in to talk about a capitulation of the ball and then I was getting told that they may have to take whole implant out and go on pick line again for approximately 3 months ….to tell you the truth I was dumb foundered and I’m still trying to process this all . I just can’t imagine how you can walk without ? Does it just hang there ? That would scare me as it would feel like dislocation wouldn’t it ? Can anyone tell me how they went with this , how long were they in bed before they could stand etc ? If I can get rid of the infection I will get a new implant put in with a cap on . Worst case scenario is no hip ….. I hope not .
Angela

REPLY
@amallasch

Hi my name is angela I am 53 years . Early fourths I had 2 hip replacements two years apart and had no issues with these for a few years enjoying life . I had a fall 7 years ago and that’s when my problems started , I broke my elbow but I knew something had happened to my hip as I could not put any weight on it . I kept getting told after the x Ray at hospital that my hip was fine ! So went home and I slowly started getting around a bit but with lots of clunking and then pain started creeping in so I went back to our health provider ( acc ) and pushing after finding they had actually x rayed wrong leg ! So I went had x rays on right leg , then ultra scan .then mri , then finally a bone scan which found the pin had shifted and was hitting the cup . .so I would need to see a surgeon who had good experience and specialises in revision . So after battling our acc provider they agreed to pay for the operation , so I finally had this done and all seemed well till I got home . The first few days I ended up back in hospital first with huge pain and a mass on my thigh ? Second time I was viliantly sick vomiting . I had some blood tests sent to lab to get tested , although I slowly got better I had huge pain in my bum and getting in out of bed was very hard , let alone normal stuff . So I went back to my surgeon And explained this and what happened earlier with 2 hospital visits . His reply was your only 6 weeks post op there is a lot of healing to go , keep doing physio . He did however sent me to get some blood cultures done ( never got and results given to me ) so of I went thinking let’s get back to getting stronger but alas as the months went by the pain was becoming unbearable my leg was swollen and jelly like to touch . So had 2nd opinion he sent me to get a aspiration done at the same time as putting in cordazone , so for a couple months and things eased , but I Never got the results of the cultures that was taken in aspiration ( approximately 60 mls ) I did get a letter saying hip was fine etc etc and nothing on results !
So I kept pushing and finally saw a back specialist and he sent me for a mri and that came back with two huge sists in and around my hip and that he thought I had a infection …..a little shocked of I went back to surgeon and he organised a aspiration and that did come back with a low grade bacteria but a very tricky one . So I then got booked in for the two phase hip operations , so my whole implant that was infected comes out , they pickle me /flush with antibiotics and clean Out as much infection as they can . I can say I was on re overly for 6 hours after that op I felt I had been run over by a bus , truck and train .A pick line was put in so antibiotics was administered everyday ,I was up and about and home in 5 days . All was going ok till 2 weeks and I dislocated ( the pain was horrific never ever have I felt so much pain ) the worst part is when they move you from bed to bed excruciating ! Hip was put in in theatre and stayed one night . The fear of this coming out was so scary I barely moved , I got home feeling very insecure . I had a health nurse come change the bottle for antibiotics everyday that happened for 6 weeks . Then 5 days later out I dislocated again omg so painful , I stayed this time 5 days in hospital as I had rung my surgeon and he said he would organise a hip brace and until that was fitted to stay put . Now this time my hip was so loose I was really afraid to move , the surgeon said once the infection has gone we will put in custom made implant , but that was 6 weeks away . I was crying all the time and then realised I needed to see someone and I was told I had ptsd and given medication to help . Finally had next operation and thought this was it but after a month I dislocated and then 3 months later . Because I Had the infection for two years inside me it left large sist like tumours That had grown and damaged my muscles in thigh and buttocks , and because of this the hip had a lot of space to come out ! So my surgeon said I’ll try lengthen leg a little and try elevate to push further into cup and in theory should help it stay in . I was going great guns walking and working on getting stronger and getting my muscles strong and I really felt this was happening. But 9 months later at a friends daughters 21st I stepped back and out she came out the front , I actually fainted in pain on that one , unfortunately we had ambulance people who were not listening to my husband who has been around every time I have dislocated and finally after lots of pushing I was sent to Tauranga hospital by chopper . Then I had a horrible doctor that bullied me to let him try put in and he tried twice and did not succeed ! I was then admitted and would go Into theatre first up on the next day . My body was shaking so much from his attempts and I had massive bruising that came out over the week . Traumatic experience that one was…so number 5 . So get told I had to class that as my 1st as was from 3 rd op ? Whatever ! So again the slow build up again but whereas I bounced back pretty good , but alas 6 months later she came out again that was 3 weeks ago now I feel it has loosened and pain in whole hip area and thigh ? I had a aspiration done and a few days ago saw surgeon and he said it looked like my fluid samples came back with two types of bacteria ! We are doing another one to be sure as the infectious disease people couldn’t say 100% . So I went in to talk about a capitulation of the ball and then I was getting told that they may have to take whole implant out and go on pick line again for approximately 3 months ….to tell you the truth I was dumb foundered and I’m still trying to process this all . I just can’t imagine how you can walk without ? Does it just hang there ? That would scare me as it would feel like dislocation wouldn’t it ? Can anyone tell me how they went with this , how long were they in bed before they could stand etc ? If I can get rid of the infection I will get a new implant put in with a cap on . Worst case scenario is no hip ….. I hope not .
Angela

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Hi @amallasch, and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion "If you're living without a hip like me, please reach out to me…" https://connect.mayoclinic.org/discussion/if-youre-living-without-a-hip-like-me-please-reach-out-to-me/

I did this so that you can connect @hiplessgranny @koala78 @nicoleb21809 @lbgoforth @cheryl99 @sueinmn and others. You may also be interested in these discussions:
– Living without a hip https://connect.mayoclinic.org/discussion/walking-without-a-hip-joint/
– Walking without a hip joint https://connect.mayoclinic.org/discussion/walking-without-a-hip-joint/
– Hip revision due to metal on metal ions. https://connect.mayoclinic.org/discussion/hip-revision-due-to-metal-on-metal-ions/

Angela, you certainly have been through an awful lot. I sure hope they can get the infection under control. Am I understanding correctly, your choices may be hip revision or no hip at all?

REPLY
@colleenyoung

Hi @amallasch, and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion "If you're living without a hip like me, please reach out to me…" https://connect.mayoclinic.org/discussion/if-youre-living-without-a-hip-like-me-please-reach-out-to-me/

I did this so that you can connect @hiplessgranny @koala78 @nicoleb21809 @lbgoforth @cheryl99 @sueinmn and others. You may also be interested in these discussions:
– Living without a hip https://connect.mayoclinic.org/discussion/walking-without-a-hip-joint/
– Walking without a hip joint https://connect.mayoclinic.org/discussion/walking-without-a-hip-joint/
– Hip revision due to metal on metal ions. https://connect.mayoclinic.org/discussion/hip-revision-due-to-metal-on-metal-ions/

Angela, you certainly have been through an awful lot. I sure hope they can get the infection under control. Am I understanding correctly, your choices may be hip revision or no hip at all?

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Yes if we can eliminate the infection after 3 to 6 months he will put a new one in .
Thanks 🙏

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@anonymous122054

Hello, it’s Robin (froggyone) I just re-read your message and I’m trying to figure out what to say. First off, I hope you’re out of the hospital and are on the mend. I can’t give you medical advice on whether you should have more surgeries. I’m the wrong person to ask about that because I’m very angry about the way things happened to me over the course of 4 surgeries and 2 staph infections. It’s crazy to me to read about people that have had 6,7 or 8 surgeries and 6 or 8 staph infections because I had 2 of them and I don’t want to ever have another procedure done, no matter what it’s for, because I’m far too scared. I can’t go through that again ever. I’m also extremely bitter and sad because I’ll never be able to work on a horse farm again. I was really in my element there and I loved it so much. I also had a housecleaning/organizing/packing,moving business for 25 year and I’m used to being strong and mobile. I loved all that work too. I can’t even fathom what I’m going to do for the rest of my life. I’m bored stiff. I am very determined to get another job, since I love animals so much it will probably be with animals. I never had to use a wheel chair. In fact, within 2 days of the final hip removal I was up and chomping at the bit to get moving. I even practiced on the stairs! My surgeon was blown away. Do you think you’ll have to stay in a wheelchair? I hope eventually you are able to use a walker, cane or even crutches. I have some good advice for you for when you start using a walker. Get back to me when you have a chance and let me know how you’re doing and when you get to go home. I’ll give you any pointers you may need. Or just listen to your worries or concerns. Take care, Robin

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Hi so what pointers do you have for walking or moving without a hip ?

REPLY
@colleenyoung

Hi @amallasch, and welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion "If you're living without a hip like me, please reach out to me…" https://connect.mayoclinic.org/discussion/if-youre-living-without-a-hip-like-me-please-reach-out-to-me/

I did this so that you can connect @hiplessgranny @koala78 @nicoleb21809 @lbgoforth @cheryl99 @sueinmn and others. You may also be interested in these discussions:
– Living without a hip https://connect.mayoclinic.org/discussion/walking-without-a-hip-joint/
– Walking without a hip joint https://connect.mayoclinic.org/discussion/walking-without-a-hip-joint/
– Hip revision due to metal on metal ions. https://connect.mayoclinic.org/discussion/hip-revision-due-to-metal-on-metal-ions/

Angela, you certainly have been through an awful lot. I sure hope they can get the infection under control. Am I understanding correctly, your choices may be hip revision or no hip at all?

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@amallasch @ Colleen Young Hi, my heart goes out to the two of you. Now my 9 hour back surgery doesn't feel bad at all. I don't have pain when I have the brace on and walking every day.
How do you live without a hip and amallasch you have gone through much. I can't imagine and Colleen, my favorite gal, I didn't know you were living without a hope. Blessings to both of you. My thoughts and prayers will be with you.Jeanie

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@amallasch

Hi so what pointers do you have for walking or moving without a hip ?

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None ….my surgeon just said you can walk with aids !

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@amallasch

Hi so how has it been walking with no hip ? How was it to start off with ? Can you get around ok ?
I have had 6 hip replacements , 6 dislocations , and now 2nd infection . They are re testing and I’m hopeful , if none I’ll have a capitulation done to keep ball in …
I’m struggling to comprehend how no hip thing works
What have you learnt
Thanks ang

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Hi I’ve been without my right hip over two years now. The first 6 months was the hardest. I was using crutches or a wheelchair. But I started slowly working on my exercise and getting strength back and I can walk unassisted now. I do have about a 3 inch leg length difference and have to wear a lift. Yesterday my new surgeon agreed to replace my hip.. but with how good I’m doing and all the complications I can have I don’t know what I’m going to do.

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@nicoleb21809

Hi I’ve been without my right hip over two years now. The first 6 months was the hardest. I was using crutches or a wheelchair. But I started slowly working on my exercise and getting strength back and I can walk unassisted now. I do have about a 3 inch leg length difference and have to wear a lift. Yesterday my new surgeon agreed to replace my hip.. but with how good I’m doing and all the complications I can have I don’t know what I’m going to do.

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Hi Nicole21809 I am in the similar position, i have been without my hip with a spacer for two and a half years after bone infection caused sepsis,i walk with crutches and have about 3 ins of shortening and am only allowed to toe tip, this is the 3rd time in 7 years i have had infection. I am very well,i drive and walk a mile each day with our dogs,i keep changing my mind,but i think when Covid settles i shall try a last time,i have been off IV and all antibiotics for 2 years, thats amazing you can walk,well donexx

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Hi I’ve not heard about a spacer ? What is this please thanks

REPLY

A spacer is similar to the actual hip joint. It's generally impregnated with an antibiotic for direct infection reduction in addition to the IV antibiotics. A spacer isn't as strong as the actual hip joint but it supports the area until the next surgery. Some people keep a spacer for years but it does have restrictions. You normally can not put full weight on it. If you do, it can go out of alignment or fracture. That is painful! Later a decision can be made to surgically place a new joint.

I have had multiple surgeries that involved infection and spacers and once no hip. I've dealt with severe MRSA sepsis and later reoccurring infection. I'm currently doing well with the fourth real hip prothesis. I did have twice a spacer. Once no hip. I'm happy I had the last hip surgery. I'm still working through physical therapy. The last prothesis did cause a lengthening of my leg so I am using a lift for my shorter good leg. Yes I did have doubts before I did this last surgery but I didn't want to deal with a wheelchair and/or inability to get around only with crutches or walkers. I do still use a walker but recently I made progress on walking with a cane for short distances around my home.

I'd be happy to help with supporting anyone with any questions you might have.

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