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Posts (10)

Mon, Feb 10 6:49pm · If you're living without a hip like me, please reach out to me..... in Bones, Joints & Muscles

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.

Sat, Feb 8 7:26pm · If you're living without a hip like me, please reach out to me..... in Bones, Joints & Muscles

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.

Fri, Feb 7 2:57pm · If you're living without a hip like me, please reach out to me..... in Bones, Joints & Muscles

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

Tue, Feb 4 2:42pm · If you're living without a hip like me, please reach out to me..... in Bones, Joints & Muscles

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.

Mon, Feb 3 2:11pm · If you're living without a hip like me, please reach out to me..... in Bones, Joints & Muscles

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.

Sun, Feb 2 11:21pm · If you're living without a hip like me, please reach out to me..... in Bones, Joints & Muscles

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…

Sun, Feb 2 5:03pm · If you're living without a hip like me, please reach out to me..... in Bones, Joints & Muscles

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.

Sun, Feb 2 3:15pm · If you're living without a hip like me, please reach out to me..... in Bones, Joints & Muscles

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.