cheryl99, Sorry for all the questions, but I keep thinking of more things. Can you explain more about the brace you wore for 9 weeks? How was it attached? Was it’s purpose only to immobilize? How difficult was it to stand, use a walker, or sit during this time? Thank you very much for your help.
The brace fitted with very strong Velcro around my waist and strapped below the knee. I understood It was meant to keep the leg straight so the scar tissue could form to help support the leg plus help keep my leg straight. So yes, it was mainly to immobilize.Had to wear it all the time including when I slept. Only time I didn’t have to was when I showered. I also slep with a pillow between my legs. I was given a foam thing to use but I couldn’t handle that and the pillow worked for me. Walking with a walker wasn’t too bad,I could sit ok but I was one happy lady to get out of that thing.
The brace fitted with very strong Velcro around my waist and strapped below the knee. I understood It was meant to keep the leg straight so the scar tissue could form to help support the leg plus help keep my leg straight. So yes, it was mainly to immobilize.Had to wear it all the time including when I slept. Only time I didn’t have to was when I showered. I also slep with a pillow between my legs. I was given a foam thing to use but I couldn’t handle that and the pillow worked for me. Walking with a walker wasn’t too bad,I could sit ok but I was one happy lady to get out of that thing.
I am truly grateful for the info. Although I haven’t ruled out one more attempt at a THP, I dread the thought of reinfection, further surgeries, and the toll it would take on my body. I am learning the hard way that there is a strong argument for not having foreign objects in one’s body that can harbor harmful bacteria. And, like you, I believe I could exceed expectations for functional outcomes in a person without a hip. Sorry ... I just thought of some other questions. Would it have been feasible at some point during your 9 week bracing to work at a desk job (that is either sitting or standing)? Are you able to exercise the hipless leg enough to build and maintain muscles? I will give you a break after this. Thank you so much!
They removed my own femur and part of my pelvic bone because of the damage from radiation and the bacteria from the cat bite. My doctor did not feel my bones were strong enough to support a prosthetic hip. He was willing to try and said we could always remove it if it didn’t work....I wasn’t willing to take that chance. My Doctor is Daniel J. Del Gaizo, MD. Link to his information https://findadoc.unchealthcare.org/details/368
@cheryl99 hi, it has been just over 4 months since my hip was removed. I am now recovering from 2 months of radiotherapy. I am walking with crutches and a walker and can get up and down stairs with a crutch and handrail. How long has it been since your hip removal? And what is your mobility like now? Also, what are your realistic long term goals? Sorry for the questions but I am struggling to find any information from people that are going through this as well. Best wishes for the future
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.
I am truly grateful for the info. Although I haven’t ruled out one more attempt at a THP, I dread the thought of reinfection, further surgeries, and the toll it would take on my body. I am learning the hard way that there is a strong argument for not having foreign objects in one’s body that can harbor harmful bacteria. And, like you, I believe I could exceed expectations for functional outcomes in a person without a hip. Sorry ... I just thought of some other questions. Would it have been feasible at some point during your 9 week bracing to work at a desk job (that is either sitting or standing)? Are you able to exercise the hipless leg enough to build and maintain muscles? I will give you a break after this. Thank you so much!
It wouldn’t have been for me because the cat bite caused bacteria throughout my body (the urgent care gave me the wrong antibiotics) and it was very sick and had to recovery from that as well....but if I had been stronger I could have stood a whiles and probably sat a while. The uncomfortable thing about the brace was when I sat it would push up against my rib cage......but I did sit a lot because I hated being in bed.
Yes I do exercises to help maintIn and keep muscle. Go to a good gym and walk on the treadmill where you can hold on. I do...plus I use some of the other machines to help upper and lower body. Talk to your doctor about what machines he thinks you should stay away from before you go.
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.
@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
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.
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
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.
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The brace fitted with very strong Velcro around my waist and strapped below the knee. I understood It was meant to keep the leg straight so the scar tissue could form to help support the leg plus help keep my leg straight. So yes, it was mainly to immobilize.Had to wear it all the time including when I slept. Only time I didn’t have to was when I showered. I also slep with a pillow between my legs. I was given a foam thing to use but I couldn’t handle that and the pillow worked for me. Walking with a walker wasn’t too bad,I could sit ok but I was one happy lady to get out of that thing.
I am truly grateful for the info. Although I haven’t ruled out one more attempt at a THP, I dread the thought of reinfection, further surgeries, and the toll it would take on my body. I am learning the hard way that there is a strong argument for not having foreign objects in one’s body that can harbor harmful bacteria. And, like you, I believe I could exceed expectations for functional outcomes in a person without a hip. Sorry ... I just thought of some other questions. Would it have been feasible at some point during your 9 week bracing to work at a desk job (that is either sitting or standing)? Are you able to exercise the hipless leg enough to build and maintain muscles? I will give you a break after this. Thank you so much!
@cheryl99 hi, it has been just over 4 months since my hip was removed. I am now recovering from 2 months of radiotherapy. I am walking with crutches and a walker and can get up and down stairs with a crutch and handrail. How long has it been since your hip removal? And what is your mobility like now? Also, what are your realistic long term goals? Sorry for the questions but I am struggling to find any information from people that are going through this as well. Best wishes for the future
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.
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1 ReactionIt wouldn’t have been for me because the cat bite caused bacteria throughout my body (the urgent care gave me the wrong antibiotics) and it was very sick and had to recovery from that as well....but if I had been stronger I could have stood a whiles and probably sat a while. The uncomfortable thing about the brace was when I sat it would push up against my rib cage......but I did sit a lot because I hated being in bed.
Yes I do exercises to help maintIn and keep muscle. Go to a good gym and walk on the treadmill where you can hold on. I do...plus I use some of the other machines to help upper and lower body. Talk to your doctor about what machines he thinks you should stay away from before you go.
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1 Reaction@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
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.
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2 ReactionsHi 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.
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4 ReactionsMary 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.
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