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

@brenda02 Have they done testing on the fluid?to see if it's infection or lymph fluid If not ask them to swab it and test it

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Wow! You people really have been through all this stuff. The fluid has been tested a couple of times. I’m told they think the bacteria is gone but I am finding out more on this site than the Doctors are telling me. My antibiotics are done this week after being extended a month. I will get more answers on Wednesday. I know the fluid is serous and blood mixture but yesterday there was very little drainage. I hope the wound is not closing while this is still weeping. The last time it closed they surgically removed 2 1/2 litres of blood.
Will send an update on Wednesday once I find out some results.

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Omg! I am no where near everything you have had done. I will see the infectious disease doctor on Wednesday then go from there. You have to have humour just to survive what we are going through. My wound has almost stopped as of Saturday so that means either I’m healing (crossing all fingers and toes) or the outside wound closed but still leaking inside.
I am still trying to make an informed decision as to long term antibiotics or no hip!
Good luck to you.

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When I had that decision, I went with wound closure and kept my hip. I was about one year out when the ongoing swelling was addressed. The wound surgeon felt all was good with the closure and he told me I was getting too far and that was why my leg and hip were bulging. I was livid because no one gains weight on one side like this did. I was having so much trouble walking even with a walker. My knee hurt so much that I could barely bend it. I made an orthopedic appointment. One look at me even before the tests this surgeon said I was infected. He had an MRI ordered and it showed fluid trails and pockets. He had an immediate aspiration done. There were so many tubes. I could see the cloudy specimens. I knew it was infection. Things moved rather fast for hospitalization, IV antibiotics, and the removal of the THR. I was in the hospital for six weeks then two weeks of rehab. Prior to discharge there was a battle of the doctors and administration because the antibiotic I needed could not be paid while outpatient not even at a rehab so I was changed from Daptomycin to Vancomycin. This actually was a big mistake because once the Vancomycin was being administered, the infection did not respond. The ID doctor in phase one actually decided just to abruptly stop the Vancomycin. Two weeks later I was tested and the infection returned worse than the first time. Throughout this time, I had no hip but I did have the antibiotic infused spacer. I went septic. I was back into the hospital. The spacer was removed but the surgeon cleaned out the area and placed another antibiotic infused spacer. I was non weight bearing on the right side. I was placed back on the IV antibiotic Daptomycin plus a cocktail of other antibiotics. I had a severe allergic reaction so I was then just on the IV Daptomycin. The cost of this IV was $5000 per treatment. I had two treatments a day. Since insurance only pays for this medicine while inpatient hospital I remained in the hospital. I have good insurance. I thank God everyday for that fact. I was inpatient for ninety days. I was discharged with non weight bearing status but it progressed to light weight bearing about four weeks later. The days at home started to get less stressing on me. But then my heart doctor needed me to do a outpatient procedure. I went for the procedure and cautioned the staff and cardiologist about my hip. Well guess I didn't stress it well enough and they inserted a line in my right groin. In the process, somehow my hip spacer was dislocated. Emergency room was going to just snap the hip back into place. Thankfully I was intercepted. The spacer actually was not able to be just snapped back it required surgery. At this point, I was tested and the infection was presenting itself again. Also at this point I was offered to remain without a hip or chance the "out of the box" surgery. I took the chance. I'm now about eight months out from the surgery. I've been told that the hip is showing signs of infection and failure. I've extensively researched the whole process of infection and prothesis. It seems that once infection is inside you, it can be contained but there's never one hundred percent certainty it's permanently eradicated. It lies dormant in the weakest part of the skeleton, tissue, or muscle/tendon. It's a risk for any surgery performed from the initial surgery thereafter. You are at high risk for reoccurrence or for new infection. I've met my crossroad. I've been doing physical therapy on a regular basis through the medical center outpatient department. I exercise everyday. Pain isn't well managed but in this area pain is managed by physical therapy, chiropractor ( if you are able), medical massage, meditation, aromatherapy, and reikki. Tylenol and/or Advil are advised for pain. Magnesium, stopping sugar, and tumeric are recommended. I've been trying to figure out what works best for me. I use a walker, wheelchair, and electric cart for mobility. I'm focused on strengthening my core and losing weight. I've arranged my life and home around laughter and positive thoughts. Prayer helps. I enjoy swimming because I don't have the weight pressure on me. If I could live in a bubble I'd be more mobile. Hot showers and heat are my go to comforts. I'm trying to accept there is going to be another surgery but the outcome is "iffy" and I need to accept the fact.

Life is good. Life is full of choices. Life is what you make it.

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After reading all your progress and research, I feel the same way. I am never going to get rid of the “bug” so the less surgery the better. My decision has to be made tomorrow morning even though I am still going to be tested for metals in the future. I have decided to tell the Doctor I will go on long term antibiotics. I don’t know the cost but that will have to factor into our budget. I have really tried to stay positive throughout all this as I know there are people in the world a lot less fortunate than myself.
My wound stopped leaking on Saturday but I am watching closely for another hematoma.
Thank you for being so honest and open telling me your situation, you helping me making my decision. I will let you know what happens in my future.

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@brenda02

After reading all your progress and research, I feel the same way. I am never going to get rid of the “bug” so the less surgery the better. My decision has to be made tomorrow morning even though I am still going to be tested for metals in the future. I have decided to tell the Doctor I will go on long term antibiotics. I don’t know the cost but that will have to factor into our budget. I have really tried to stay positive throughout all this as I know there are people in the world a lot less fortunate than myself.
My wound stopped leaking on Saturday but I am watching closely for another hematoma.
Thank you for being so honest and open telling me your situation, you helping me making my decision. I will let you know what happens in my future.

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I will keep you in my prayers. I cannot do long term antibiotics because when I next need antibiotics, the infection may not respond. I will have this hip structure until it gets too bad for me and my mobility. If you're not overweight and not infected, the TRH is more successful. Eat healthy, exercise daily, and you know your body better than anyone else ( this includes your doctor) so you decide. Hopefully you won't develop a hematoma if you are on a blood thinner. The wound area can be gently massaged to keep the fluids flowing. Check with the physical therapist to guide you. The area has had an insult ( surgery) and the body's defense is to send more fluid to the area. Gentle massage can help.
I will keep you in my prayers and just tell yourself it will be good… positive thinking heals.

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Thank you so much. 🙂

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The Infectious Disease Doctor conferred with my Surgeon and they agreed I will go on long term antibiotics. I’m on Rifampin 300 mg (2 capsules once a day) and Doxycycline 100 mg ( 1 capsule twice a day). This worries me greatly as I am not sure how I will deal with another infection. They come on me so fast I don’t have time to think about it! I wish everyone all the best in life’s journey.

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I wish and pray the best for you. I'm not able to take either because those I'm allergic.

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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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I'm surprised the Girdlestone Procedure was done. It's rarely done anymore. Was this your only option? What were your co-morbidies that forced this procedure? I went septic actually three different times and I guess I will have to thank my surgeons for not going that route. I do deal with serious co-morbidies too. If you're not having fevers anymore, you're infection free. I'm happy to hear that you are doing well and can walk. That's not usually the case. You're in a low percentage of people who are able to walk. Since you're healthy you might want to get another opinion on whether you can receive a prothesis again if you want.

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I am in the uk and have had my spacer in for 2 years,i have been off antibiotics for a year, This is the third infection i had in 7 years,previously to that i had a hip in for 12 years,infection then new hip for 6 years and so on. Now the decision is whether i try another hip,yes i have pain and walk with crutches,but i can drive and lead a full life.xxxhugs

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It's my understanding that the spacer can break easier than the prothesis. Also the spacer was impregnated with a antibiotic and actually depletes as time goes forward. It's great that you have great results with.the antibiotics and the year(s) without active infection. In the UK there's different choices regarding medications, maybe? If I lived with the opportunity to have a THR I'd give it serious thought. You're still young in this journey in regards to surgery. Living with the idea of "what if" would be a challenge to me. I would reach for the normal hip prothesis.

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