dzoneill
@dzoneill
@dzoneill
Posts: 3
Joined: Mar 11, 2017
Walking without a hip joint
mary121658
@mary121658
@mary121658
Posts: 27
Joined: Dec 05, 2018
I was born with a congenital hip dislocation and had 3 surgeries between the ages of 2 and 15. At the age of 26 (1985) I had a THR. There were 3 revisions, the last in 2006 at Henry Ford Hospital in Detroit. In 2013 I was admitted with sepsis, a massive mrsa infection which later mutated into visa. March 2014 the prosthesis was removed and I spent 2 1/2 years in a wheelchair and on IV antibiotics most of that time. Last summer my case was taken over by another surgeon who deemed it unwise to try another revision and we agreed. A new infectious disease doctor changed antibiotis and I am now mrsa/visa free. I have no hip and no spacers, the femur is significantly shorter, leg length difference is 3 1/2 inches. The new surgeon has me walking with walker and crutches and a 3 inch lift on my shoe. 3 months physical therapy to strengthen muscles atrophied from so much time in the wheelchair. I am about to move to one crutch, and the goal is a cane. Xrays show excellent build up of scar tissue supporting the leg. My original question was wondering if there are others having the same experience.
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.
mary121658
@mary121658
@mary121658
Posts: 27
Joined: Dec 05, 2018
Well this is very interesting, considering I have been a member of this forum for at least 5 months and have been looking for someone, like me who is living without a hip joint. I have found no one until just now. Everyone else is living with a spacer and awaiting a 2 stage or living without a hip until their staph infection is gone. February will be the one year mark of having no hip joint. My whole saga should be on this site somewhere. Maybe you could try to find it and contact me and then we can share some advice on how we’re both getting around. That would be great. It’s been a long day of pain and I can’t sit in this chair anymore but please, do get back to me. I’m actually very excited to find someone without a hip like me. Robin
@edzoneill
mary121658
@mary121658
@mary121658
Posts: 27
Joined: Dec 05, 2018
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.
cheryl99
@cheryl99
@cheryl99
Posts: 23
Joined: Apr 27, 2018
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
mary121658
@mary121658
@mary121658
Posts: 27
Joined: Dec 05, 2018
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.
mary121658
@mary121658
@mary121658
Posts: 27
Joined: Dec 05, 2018
jbro
@jbro
@jbro
Posts: 33
Joined: Nov 15, 2018
It has been almost 3 years now. I walk with a walker mostly but I can walk with a cane. I use a cane going in doctors offices and restaurants…but not really long distances and shopping. Mainly because I don’t like being in really crowded areas with the cane where I could be accidentally pushed. Do not want to accidentally fall since I do have fragile bones caused by radiation over 16 years ago.
I can walk without anything but I will do that mainly around the house where I am on carpet. I also find walking without anything can cause some pain since no matter how hard they try with shoe lifts, not having a hip makes a difference in walking. A Cane helps prevent some of that.
I can climb stairs with a cane and rail, but we did put in a ramp to come in the house just to be on the safe side. It appears I am doing as well as I will but I still push myself everyday just in case there is still improvement to be had….but I am not complaining because I can walk, I shop on my on and clean my own home (which I can definitely tell when I vacuum and scrub floors) , and I will go to the coast on my own since the hubby doesn’t like the beach. I try not to let it stop me from doing things I want to do. It has been a change but I guess I’m getting use to it and know how to plan when I go places. All that being said I guess you should know I am now 70 years old and I had my surgery when I was 67. If you are younger you may find you will do better and from the sound of your recovery so far you are ahead of where I was at that time.
Just a note: Going to a gym where you can walk on a treadmill and do some exercises on the machines really helps. But be sure your therapist or doctor says it is ok first. They should also be able to tell you what type machines to stay away from. I also have used a few different types of canes. Hate the medal four legged one. My favorite is the one that has the large round rubber bottom that stands alone. I liked the hurricane until I found this one at the drug store. It makes me feel more steady and it doesn’t sink in the sand if I step on the beach.
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
jbro
@jbro
@jbro
Posts: 33
Joined: Nov 15, 2018
I've had four surgeries, but never had a hip replacement hardware. I had broken bones that would not heal (radiation damage) that got infected. The last surgery was on 04/2017 removing some more bone from the top of my left femur (girdlestone) and removing the front part of my pelvic bone (due to infection). Note that this surgery was way more drastic than a regular girdlestone surgery. It was my fourth surgery, removed lots of bone, and I had a problem with the femoral artery, so I ended up with three large incisions instead of one. My muscles are finally getting stronger, but without the bones in there, my hip area is definitely unstable. Also since part of my pelvic bone was removed, my muscles don't work like they used to–the underlying framework is gone. A couple of times, I've tried to do too much physically which resulted in a terrible muscle spasm in my hip and thigh with pain that lasted for weeks. I need to learn to be more gentle with my efforts to recover.
My bones will not fuse together as they might for some people–they are too far apart. I think the scar tissue will continue to form in there which will add more stability over time. I've gotten a lot stronger since January of this year.
I am currently not able to walk without some external support. I am able to use crutches for short distances, but prefer a rolling walker as it is more stable and I can sit when I get tired. After the last surgery, it took several months before I was able to walk with a rollator. I was using a wheelchair until then. A few more months before I was strong enough to use the crutches. Now I am able to go up one step (or a curb) with both the crutches and the rollator. I have been able to go up a few steps at a time with a sturdy handrail on one side and a crutch on the other side. I avoid stairs. I don't walk very far with crutches. I can walk much farther and faster with a rollator. I am hoping one day to be able to walk short distances with a cane or one crutch, but I don't know if I will ever be able to walk unassisted again. I have difficulty just standing in one place for more than a few seconds.
My left leg is about 2.5 inches shorter than the right. I had the sole modified on my left shoe to add 1.5 inches. It makes walking and standing easier.
I use pillows when I sleep to help support my hip. I don't recall being immobilized after surgery. They used foam blocks on one side just for support. I use a leg lifter to get my leg in bed. It's a long stick with a loop at the end. I have to use my hands to reposition my leg sometimes or roll over in bed. I have to lift my leg with my hands into my car. I would not be able to drive a stick shift–I have an automatic transmission in my car.
I take Doxycycline forever to help prevent infection from flaring up. When I went off the antibiotics the last time, I had an infection within a month and was back in emergency surgery. They call it suppression therapy.
I definitely have less pain after the broken and infected bones were removed. But it took a few months to feel better because I had such a big surgery.
Whatever PT they give you, do it. It helps strengthen the muscles you need to walk. You can do it! The body is an amazing thing!
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
jbro
@jbro
@jbro
Posts: 33
Joined: Nov 15, 2018
Hi, I had a Girdlestone procedure in July 2018 due to cancer. I am currently undergoing radiotherapy treatment. I can walk with crutches or a frame and can get up and down stairs with one crutch and a hand rail. I do have significant muscle loss on my bad leg and it is also about 3cm shorter. I'm eager to walk again as unaided as possible. Any tips or advice would be gratefully received
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
cheryl99
@cheryl99
@cheryl99
Posts: 23
Joined: Apr 27, 2018
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.
jbro
@jbro
@jbro
Posts: 33
Joined: Nov 15, 2018
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
Geek_Girl
@geek_girl
@geek_girl
Posts: 14
Joined: Jul 11, 2017
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
@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