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

Interested in more discussions like this? Go to the Bones, Joints & Muscles group.

@mep8776

Hi, my name is Mike. in December of 2016, after thirteen years my left hip replacement developed an infection and after several attempts (several hip surgeries) to get rid of the infection, my hip was removed with no hope of getting a new replacement. I was left with a leg that was 2.5 inches shorter than the right leg and my left foot angles out to the left at 45 degrees. Long story short, I can walk using a cane to get around and I wear an elevated shoe. if anyone would like more information, let me know.

Jump to this post

Would a soft or hard brace be useful for someone without a hip?

REPLY
@bcs123456

Would a soft or hard brace be useful for someone without a hip?

Jump to this post

Now, that is an interesting question, and the answer is my least favorite reply to get from anyone – it depends.

You would need to consult a PT/Prostheticist, on referral from your Orthopedic surgeon, to determine the best solution for you. Every body is different, every hip/no hip issue is different, and every individual has their own goals and expectations.
My daughter worked for a large, famous children's ortho/surgical hospital, and the variety of solutions these magical teams came up with to maximize each person's abilities was magical! If you are going to be long-term or permanently without a full joint, I would suggest you contact your ortho and request assistance finding such a group – possibly through a surgical or teaching hospital
Sue

REPLY
@sueinmn

Now, that is an interesting question, and the answer is my least favorite reply to get from anyone – it depends.

You would need to consult a PT/Prostheticist, on referral from your Orthopedic surgeon, to determine the best solution for you. Every body is different, every hip/no hip issue is different, and every individual has their own goals and expectations.
My daughter worked for a large, famous children's ortho/surgical hospital, and the variety of solutions these magical teams came up with to maximize each person's abilities was magical! If you are going to be long-term or permanently without a full joint, I would suggest you contact your ortho and request assistance finding such a group – possibly through a surgical or teaching hospital
Sue

Jump to this post

Thank you Sue. I am about to have a revision of my first hip post infection and spacer. I researched scenarios of failure thus my question. During my research I came across many people with no hip but no mention of braces or exoskeletons which I naively did not understand since they seem like viable solutions (at least worth a try). Thank you again for the great job you do.

REPLY
@bcs123456

Thank you Sue. I am about to have a revision of my first hip post infection and spacer. I researched scenarios of failure thus my question. During my research I came across many people with no hip but no mention of braces or exoskeletons which I naively did not understand since they seem like viable solutions (at least worth a try). Thank you again for the great job you do.

Jump to this post

Good luck with the revision! Mine were due to heavy metal poisoning, so I was pretty ill when they were done in 2011, and recovery was long and questionable due to tissue damage, so I understand your concern.
If, and I hope this does not happen, your revision has problems, maybe you can become our research specialist and first user of some sort of aid or brace, Though I aam hoping you have success.
Sue

REPLY

Hey Robin – I too am a one hip wonder!!! Congenital birth defects; surgeries as a child then severe osteoarthritis so hip replacements started in my 30's. I am now 57 and 13 hip surgeries later I have no left hip. Multiple bouts of infection, several dislocations, basically any complication one can have I've had and multiple times. I get around with use of a walker but essentially do everything I used to just real slow – yes falls are scary. I'm still adjusting too and would love to hear from you.

REPLY
@koala78

Hey Robin – I too am a one hip wonder!!! Congenital birth defects; surgeries as a child then severe osteoarthritis so hip replacements started in my 30's. I am now 57 and 13 hip surgeries later I have no left hip. Multiple bouts of infection, several dislocations, basically any complication one can have I've had and multiple times. I get around with use of a walker but essentially do everything I used to just real slow – yes falls are scary. I'm still adjusting too and would love to hear from you.

Jump to this post

I'm always glad to hear from those of you "in the trenches" living without a hip.

My 'cousin twin' and I had our first round of replacements the same month at age 53, she soon contracted MRSA from the VA hospital where she worked and went through years of surgeries and treatments and eventually landed in a wheelchair. She had an abusive spouse who kept saying "you can't" but 3 years ago her kids/step-kids removed her to her supportive daughter's home, where she has lost weight, controlled diabetes, gotten on the cochlear implant path, and gotten OUT of the wheelchair in the house. Now at 70 she is beginning to see possibilities, and I am thrilled to have her back.

I loved hearing that you can do what you need/want, just slower. Hang on to that positive attitude – living our best lives in spite of challenges is what Connect is all about.
Sue

REPLY

I am on here for my mom she is 72 and had hip replacement surgeries on both hips about 15 yrs ago, had breast cancer 5 yrs ago and 2 yrs ago she had MRSA in her leg and had to have several surgeries to get the infection out and also they removed her one hip replacement. She lost a lot of blood and and will not take blood no matter what I or anyone told her, then she got infections when she went to a nursing home to heal had a quite a few mishaps from the care there and then covid hit so everything was shut down and her surgery was not considered essential so it was postponed. Now she has been 2 yrs in a hospital bed this month and they said she will need at least two surgeries but a couple of doctors don't think she will be handle them. My family is no help they all aren't very motivated getting her help to get better and I live far away if someone knows of any one or anywhere to get her help or go over options or even talk to her for support, I would greatly appreciate it. Thank you.
Dee

REPLY

I'm a 44 yrs old male here in Puerto Rico, I just had my third hip surgery a week ago. The first one they just cleaned it out, second one they took out the ball and rotator cuff, now the third one they took out the metal that goes inside the femur…..I also had a pus pocket coming out of my scar few mo the after my second surgery…I'm thinking they should of took the whole thing out in the first place…your story is almost s mirror image of my…but my is in the left hip, I'm still active in what I can do, but you are right we can't be in the same position for too long, can't sit enough, can't stand enough, can't lay down enough……it sucks but I'll get through this…
Hope you are feeling better now, would love to hear an update if possible thanks, God bless.

REPLY

Hi Robin…My name is Bev Rials..right now I am writing you from the hospital where I have been for almost 3 months..I have had 4 surgeries and a yeast infection that they can not clear up…unlike you I was born with a congenital dislocation had surgery in 1946…the are sending me to UC in SF where they will problably take out the hip…I also live by myself with my little dog Susie…I do not want to go threw another hip surgery at my age.

REPLY

would love to hear from you!!

REPLY

Hello my name is Marilyn I also dealing with my hip I have had 2 hip surgery 2 elbow surgery and a wrist surgery my last surgery was done October 2021 take my hip out due to staph infection and now the doctor are saying they are not going to put my hip back because of a bone that was broke in my hip I just can't accept that I'm very independent and I'm tired of being in this situation

REPLY

Marilyn I feel your pain. I have been without a hip since 2016. I have learned to deal with it and do live a independent life. I have the shoe for the leg without a hip built up about 1 3/4 inches and use a walker most of the time. I can walk with a cane short distances such as going in a restaurant and doctors office if it isn’t far. I use a rolling walker and have a basket on the front so I can get around pretty good in malls and grocery stores. Just have to keep my upper body strong so I can put the walker in and out of the car. The hardest thing is cleaning the house especially vacuuming and scrubbing floors, but I manage. Don’t get me wrong, the first year was the toughest because I had bacteria all over my body because of a cat bite and had dama age to my bones from radiation due to cancer in 2002. The bacteria.finished the job on some of those bones. I was in a wheel chair for about 4 months but worked really hard to get to a standard walker. Once there I was able to recover pretty quickly. I had a great therapist who knew I wanted to walk the best I could and be independent. She was one that you had to be careful what you wished for because she worked you hard to get there. When I was stronger I joined to gym so I could use a treadmill to help build my legs since I had to hold my self up by my arms, the treadmill really helped. I also did other leg and upper body exercises there. All I can say is don’t give up, you will be surprised just how well you can do without a help if that is what you want. I wish you the best and if you have any questions that I can help with, let me know.

REPLY
Please sign in or register to post a reply.
  Request Appointment