I had almost the identical situation except I wasn't born with a problem but the rest of your story has happened to me. I have no hip joint or spacer just antibiotic seeds. I'm in a wheelchair since June and I've had 4 surgeries in the past 6 months all due to infections in the replaced hip. My leg is significantly shorter as well however I had the other hip replaced and the surgeon cut 3 nerves and I woke up screaming and had drop foot. I went to a neurologist and he did nerve conduction studies and found the cut nerves and also said my excruciating pain is due to a disease called Rsd. Reflex sympathetic dystrophy syndrome.. It's a very painful nerve disease which you can get from a fall, sprain or surgery. In my case it is from the surgery. I learned to walk on my tip toes but it has never been strong. Stress alone will flare the RSD. Now I can't count on either leg so I'm stuck in this wheelchair and using a sliding board to transfer. I'm 59 years old and I have a really hard time accepting this. I'm on permanent antibiotics to hopefully keep me from getting any infection again. I spent half of this year on IV antibiotics. I don't understand how they can even work anymore. I'd think that my body would be immuned to them by now. I'm happy to hear that you are able to walk. I can't I can feel like the bone in my leg is rubbing against my pelvic bone if I try to stand up. Good luck to you.
Hi I was beginning to think I was the only one without a hip. My 1st hip was done in 2012. I had Avn. I woke up screaming in pain and had a drop foot. The surgeon had cut 3 nerves. My tibial, peroneal and sciatica. I didn't get infection but I saw a neurologist for the excruciating pain. He did nerve conduction studies and told me I have RSD… REFLEX SYMPATHETIC DYSTROPHY SYNDROME. It was due to the mistakes made during surgery. There is no cure and I've never had pain so severe as this. I see a pain management Dr and I'm on methadone as well as I get ketamine infusions for the RSD. That is the only thing that helps me to deal with this disease. I'm atrophied up to above the knee and I can't be touched that's how bad it is. Ok then in 2015 I was told the other hip was necrotic as well. I thought long and hard about going through this surgery again but the pain of walking with a walker was more than I could stand so I had the surgery. It went well. I had pain but it was surgical pain. I expected that. I was good for about a year and a half and then woke up one morning screaming. I went to the ER and was admitted due to infection. I couldn't believe it. I'm here again with a hip issue. They removed the artificial hip and cleaned out the whole area and put in a spacer plus 6 weeks of IV antibiotics. I went to rehab. I was walking with a walker. At the end of the antibiotics 6 weeks later I'm still in the same pain. I told the Dr in rehab but I was sent home anyway I couldn't stand it anymore and again I was at the ER. I was right that pain was the infection. It never went away. The spacer was removed and again the whole area flushed and cleaned. The infection had gotten into the bone so I lost several inches off my leg and they put antibiotic seeds in and that was it. The surgeon mentioned getting a new hip replacement put in if I went 4 months without infection. I asked if I could live and walk without a hip and he said yes however he thought I'd be in a wheelchair since I don't have help from the other leg. I told him I'd rather be in a wheelchair than to take a chance of this happening again. I've been in a wheelchair since June had a drainage tube for 3 months until it got dislodged in the middle of transferring from the chair to the bed. Thankfully no infection since July. I'm now on doxicyclene to hopefully keep me from getting infections for the rest of my life. During these infections I have been on vancomycin which didn't work. I had mrsa which is very difficult to get rid of and is resistant to some antibiotics. Then I was put on doxicyclene.and merrapenum both very expensive antibiotics. I was on them for 7 and a half weeks. I'm now on daptomycin for life. I'm only 59 years old. I have osteoarthritis, osteoporosis, diabetes type 2, copd, hypothyroidism, and stomach problems as well. I developed a rash all over my body which a dermatologist did a biopsy and it came back as a drug allergy but to what I can't get an answer. I've had the rash almost instantly after starting the daptomycin. I was taking 100mg twice a day. I stopped taking one of them in hopes this horrible itchy rash would go away. I've had it since July and it still itches constantly. Mostly at night. Im so disgusted I can't even walk to the shower. I have to use a basin and get washed while I'm on the bedside commode. I scrub my body every day really hard so this rash doesn't give me another infection.. Any advice would be greatly appreciated. Ty.
Mary I am so sorry for what you are going through. What I went through was bad enough but your situation is a lot worse than mine. Hopefully they can do something about some of those…like what are you allergic to, and hopefully you can eventually get off those antibiotics because I’m sure they aren’t helping your stomach issues. Maybe when they get rid of those infections things will get better. I’ll keep you in my prayers and thoughts. Hope you get some positive feedback soon…try not to give up on your recovery.
Liked by mary121658
Hi cheryl99, I hope all is going well for you. Once again, I am re-reading your posts regarding life without one hip (but not a Girdlestone fixed hip & pelvis), and I find comfort in knowing you have adapted and remain active. If it is your right side without a hip, can you still drive? If yes, are any adaptations required? Also, how difficult is it to get into position to do jobs like scrubbing floors? Thank you, jbro
Hi, Geek_Girl
While reading your post again, I have some new questions and would be grateful to learn what you know.
1. Before your first surgery, did the surgeon discuss as an option the purposeful separation of your femur and pelvic socket, rather than trying to fuse them (Girdlestone)? If yes, did the surgeon give pros and cons for each option?
2. Did your doctors ever say that infection was less likely, or easier to treat, with one of the two options above?
Thank you for your time, jbro
Hi, peaky1966
I have the same questions for you as what I just asked geek_girl:
1. Before your Girdlestone surgery, did the surgeon discuss as an option the purposeful separation of your femur and pelvic socket?
If yes, did the surgeon give pros and cons for each option?
2. Did your doctors ever say that infection was less likely, or easier to treat, with one of the two options above?
Thank you for your time, jbro
It was my right hip and yes I can drive. My right shoes have a lift that helps even out my legs which also helps with the driving. I do not require any other adaptations to my car to drive. Scrubbing floors is a challenge. Can’t really get down on the floor and getting the edges like I should. But I can use a mop but I have to admit when I do the vacuuming and scrubbing my left leg pays a price. It will ache from overuse since I am compensating for the right leg. If you haven’t gotten a lift on your shoe to compensate I recommend you do so. This helps prevent back problems because of the shorter leg and helps with your overall walking.
cheryl99,
Again, I really appreciate your time in sharing your knowledge. I am still being evaluated (for another 2-1/2 months) to determine whether my prosthetic hip joint needs to be removed. It all depends on whether they caught the infection in time with debridement surgery and subsequent 6-weeks of daily antibiotic infusions.
Your testimony about living without one hip has been very comforting to me as someone who dreads the thought of possible infections in the future. I wish you the very best, jbro
@jbro my first surgery was an emergency surgery done by a local doctor and not the specialist I had originally consulted with. The specialist and I were not planning any surgery because my bones weren't healing (radiation damaged) and felt any surgery was a high risk for infection. So we didn't discuss the options you mention. I already had an advanced infection at my first surgery.
@peaky1966
@cheryl99 wow! You really are truly inspirational. Age is only a number and it sounds that your positivity is keeping you going. Well done you. I am determined to be as mobile as possible. You have proved to me it can be done. I am 52. Best of luck