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

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So, if I understand correctly, you can do all this without a hip? Is it your right or left? Can you drive a car? Do you have a lot of pain with walking?

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@brenda02

So, if I understand correctly, you can do all this without a hip? Is it your right or left? Can you drive a car? Do you have a lot of pain with walking?

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Yes I have no right hip. I can drive and I don’t have any pain in my bad hip at all anymore but sometimes will have lower back pain on my bad side if I over do it… it feels weird if I move my leg in certain positions but I wouldn’t say that it hurts…. it’s just a strange feeling. This past summer outside playing with the kids decided to try and get on one of their bikes and couldn’t believe I can ride! I never thought I would be able to do these things again.

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@koala78

Yes have had many similar complications; including 3 separate incidents of infection – all were caused by different bacteria. There is not enough one stock on the left side so they did not put an implant there- this will be permanent- I’m actually getting by pretty well. About a 3 inch leg length difference so inside I wear 1 raised shoe and nothing on the other foot – balances pretty good but looks goofy! Lol. Only use wheelchair for longer distances otherwise use a walker. We have a tub chair but I no longer need the tub transfer. I can do a few stairs if there is a railing. Have adapted well and have no issues with this compared to having infection. I developed a sinus tract atone point and had a weeping wound for a year – home care was here daily to change dressings. Then once the implant was out and infection cleared up no more drainage. Have pain at night so take t3’s or long acting dilaudid. I call myself a one hip wonder!!!! Lol

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My biggest concern is the leakage. This has been going on since September 2018 and they don’t know how to stop it. By the looks of other people’s posts, I might have to have the hip prosthetic out completely, another full round of antibiotics, then I might have a chance to start getting better. Of course this means I will be without my right hip for ever.
Has everyone been tested for metal allergies? I’m waiting for this to happen so I can rule it out. I’ve been to an Internist/Allergist who is checking me for special bloodwork, a Rheumatologist who has decided my arthritis has nothing to do with my situation, and I’m waiting for a report from the hospital where my original hip replacements were done to see the manufacturer and components of each prosthetic. I have not had a problem with my left hip!
Did anyone have an option to go on long term antibiotics? I’m just trying to gather information to make an informed decision.

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@nicoleb21809

Yes I have no right hip. I can drive and I don’t have any pain in my bad hip at all anymore but sometimes will have lower back pain on my bad side if I over do it… it feels weird if I move my leg in certain positions but I wouldn’t say that it hurts…. it’s just a strange feeling. This past summer outside playing with the kids decided to try and get on one of their bikes and couldn’t believe I can ride! I never thought I would be able to do these things again.

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Well, you are amazing! Congratulations on your determination to keep moving. Unfortunately I have never been an exercise enthusiast so I feel that would be a big hurdle for me. I love going to the pool to do classes but that is about it. I love driving the car so glad to hear you can do it. You have youth on your side, I’m going to be 69 in the summer. Did you go to the Mayo Clinic to have the work done? I live in Canada about 2 hours from Seattle Washington, but all my work has been done here.

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@brenda02

Well, you are amazing! Congratulations on your determination to keep moving. Unfortunately I have never been an exercise enthusiast so I feel that would be a big hurdle for me. I love going to the pool to do classes but that is about it. I love driving the car so glad to hear you can do it. You have youth on your side, I’m going to be 69 in the summer. Did you go to the Mayo Clinic to have the work done? I live in Canada about 2 hours from Seattle Washington, but all my work has been done here.

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I’m in ny. Had it done here .. my surgeon told me if I had another surgery and it got infected that they might have to amputate my leg.. I don’t like him he is rude and really could have done things differently. I really don’t even know where to start in looking for a surgeon that can help me. The only other second opinion I had didn’t want to touch my case either. I feel like if I had money things would be different they would want to try and help me! I don’t know it’s probably better to stay this way is long as I can keep doing what I’m doing i should be ok … just getting use to the limp has been hard for me, people always want to know what happened to me cause I use a cane at my age.

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@nicoleb21809

Hello I’m nicole I’m 36 and have 3 kids 7, 6 and 10 years old. I had a hip repair which failed then a replacement that got infected bad I was septic, they took it out and I had a girdlestone procedure. That was in July 2018. I’ve been without a hip joint ever since..my surgeon won’t touch me again. I’m doing pretty good I suppose I workout every day I can walk fine without a cane but have the crazy limp.. I use a cane in public though… and have a lift in my shoe I bought on amazon..i know if I didn’t start working out like a maniac I wouldn’t be able to do these things. I can do squats and stairs are easy now I use an exercise bike daily… but it was definitely hard thinking I’m gonna be like this forever. I’m scared to have another replacement because of the risk of infection coming back. I’m so glad I’m not the only one!!

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@nicoleb21809 Welcome to connect I admire you in not letting this problem without a hip define you Congrats to you .Think upon another operation till you get an answer and feel right about it God bless you

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@brenda02

My biggest concern is the leakage. This has been going on since September 2018 and they don’t know how to stop it. By the looks of other people’s posts, I might have to have the hip prosthetic out completely, another full round of antibiotics, then I might have a chance to start getting better. Of course this means I will be without my right hip for ever.
Has everyone been tested for metal allergies? I’m waiting for this to happen so I can rule it out. I’ve been to an Internist/Allergist who is checking me for special bloodwork, a Rheumatologist who has decided my arthritis has nothing to do with my situation, and I’m waiting for a report from the hospital where my original hip replacements were done to see the manufacturer and components of each prosthetic. I have not had a problem with my left hip!
Did anyone have an option to go on long term antibiotics? I’m just trying to gather information to make an informed decision.

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@nicoleb21809 You ask about long term antibiotics Ask your Dr about this but I know alot of antibiotics are hard on the intestines in particular You have to take a good Probiotic You can become immune to them if you really need them for something else Talk with your Dr about this

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I was told it's best not to take long term antibiotics because when you really need them in the future you will be immune. There might be a new antibiotic on the market but you might not be a candidate for it. Last year I was given Vancomycin and it didn't work. The ID doctor then put me on Daptomycin and I had to stay in the hospital for the twelve weeks of IV. He tried a combination then with the Daptomycin but I had a severe allergic reaction. Since then he said it is a mixed decision about long term antibiotics. He felt no to doing it. Even though you get through that infection, it doesn't mean you are clear of the germs. The germs can lay dormant in the weakest part of the body then flare up if injured, new surgery, or something hits your immune system.

I'm cautious about being out in crowds. I keep my home clean. I keep myself clean. I'd rather not go through the touch and go illnesses.

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@brenda02

I can relate to a lot of your issues. My friends can’t believe how well I am coping with all the stress, but attitude is everything for healing.
I’m very fortunate as my husband has been helping me immensely. One of my options is to have the hip removed completely like you.
Do you spend all of your time in a wheelchair? Can you put any weight on your hip less leg? Like transferring to the toilet or shower?
I feel I can live like I am currently if only they could stop the leaking. No one has any answers for me.

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I have a good humourous attitude. I'm adapting my life based on my strength level for the day. I cannot walk with my walker too far so I use my wheelchair as needed. I use ice and heat for pain. Tylenol doesn't help pain. I do run random fevers. These have not been identified with any specific reason. I have had a surgery that replaced the spacer but it's experimental. It appears it's not going to be a long term solution. I was told it needs to be taken out. This means there will be zero hip again. I'm not using any antibiotics because when I really need an antibiotic I want it to work. Advil or Alieve are my occasional used medications for pain. I cannot be on them for long periods of time because I am in stage three kidney failure. My surgeon took a major chance with me. I had no hip then the first spacer. The antibiotics didn't work. Second surgery and a new spacer and twelve weeks IV antibiotics then time to heal. The third surgery by this surgeon, he designed a femur, ball, and Teflon coated pelvic hip. This is now the troubled area because it swells. They do aspirations on a regular basis but I was told it has to come out. Twelve weeks of IV antibiotics and no more hip again.
In total this will be my seventh hip surgery not including the numerous debridement. I've been through three partial hip surgeries and three THR and one custom designed THR with a total femur replacement. I'm trying not to have this removed. It's not just the hip I'll lose but my femur too.

I need positive methods to manage. Tips on how one bathes, dresses, sleep, walk, etc. Please let me know if you have any specific assisting mechanisms. Thank you.

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@nicoleb21809

Hello I’m nicole I’m 36 and have 3 kids 7, 6 and 10 years old. I had a hip repair which failed then a replacement that got infected bad I was septic, they took it out and I had a girdlestone procedure. That was in July 2018. I’ve been without a hip joint ever since..my surgeon won’t touch me again. I’m doing pretty good I suppose I workout every day I can walk fine without a cane but have the crazy limp.. I use a cane in public though… and have a lift in my shoe I bought on amazon..i know if I didn’t start working out like a maniac I wouldn’t be able to do these things. I can do squats and stairs are easy now I use an exercise bike daily… but it was definitely hard thinking I’m gonna be like this forever. I’m scared to have another replacement because of the risk of infection coming back. I’m so glad I’m not the only one!!

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@nicoleb21809 You are doing amazingly well. It just shows what determination can do, I’m sure it was hard work getting to where you are.
I hope you will find a very excellent surgeon to get another opinion from. You are awfully young to have no hope for improvement. There’s a hospital in NYC, The Hospital For Special Surgery that is the #1 hospital in the country for orthopedics. There is also a hospital in Boston that is renowned for orthopedics, New England Baptist.

@brenda02 I too was never a fan of exercise but I have forced myself to do it. I belong to a health club and go there 6 days a week, alternating the pool and the gym. I hate going but once there I’m OK, and when I’m done with my routine I feel very self-satisfied that I did it. My son is extremely fit, works out a lot, but even he says that no one really likes to go!
I am 72 and have just been doing this for 3 or 4 years. From what I’ve been told it’s even more important as we age because we naturally lose strength and it also helps with bone strength. If you can get a personal trainer for a few sessions to get started that’s a good way. I had some physical therapy and transitioned what I did there to the gym. If you can get a referral for PT I think that’s the best way because they know what is best for you and your circumstances. Once you get started it does get easier.
JK

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@nicoleb21809

I’m in ny. Had it done here .. my surgeon told me if I had another surgery and it got infected that they might have to amputate my leg.. I don’t like him he is rude and really could have done things differently. I really don’t even know where to start in looking for a surgeon that can help me. The only other second opinion I had didn’t want to touch my case either. I feel like if I had money things would be different they would want to try and help me! I don’t know it’s probably better to stay this way is long as I can keep doing what I’m doing i should be ok … just getting use to the limp has been hard for me, people always want to know what happened to me cause I use a cane at my age.

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I will be moving back to Ontario Canada in the next few months. All our family is there and I’m looking for a new surgeon there hopefully to review everything and come up with more or better options.
Your surgeon sounds awful. Mine has compassion but feels he has done everything correctly from his standpoint. He said he doesn’t want to do any more surgery on me.
If I could get the leaking stopped I am willing to live with the limp and the pain. Just can’t fathom living without the hip. You have my greatest admiration.

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Is your wound doctor doing tests on the leakage? Is it lymp fluid? Or is it infection? If infection, did they try silver for healing? Or manuka honey? If infection, the only course is to remove the hardware but that still doesn't mean the infection goes away. If the infection gets too much into the tissue and bone you could lose the leg. The real reason for doctors not doing more is because they too don't know exactly what the bacteria leaves behind. Infection changed the care. I couldn't get any doctor to even consider another THR while I had a weeping wound. It was considered best for closure but the infection actually became worse once closed. That was the catalyst for the last three surgeries. I almost died. I'm not going to sugar coat the process. It's painful, uncertain, and outcome means a strong fierce determination. I wish you luck. Best regards…

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