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

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@jaqavious20

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

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Hi Marilyn – my husband has been without a hip since April following a fungal infection and then a staph infection in his femur. He’s still in some pain but is managing to get around using two crutches. The hope was to check for infection and if all clear they would try and put it back in but he has since developed a blood clot in his lung which has postponed it happening. They have told him that the likelihood of recurrence is high due to the type of infection. I have read many posts on this site and some have said that the longer the hip is out people learn to adjust. Look back at some posts and hopefully this will give you more hope that things will get easier in time. I wish you good luck for the future.

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@acolquhoun

Hi Marilyn – my husband has been without a hip since April following a fungal infection and then a staph infection in his femur. He’s still in some pain but is managing to get around using two crutches. The hope was to check for infection and if all clear they would try and put it back in but he has since developed a blood clot in his lung which has postponed it happening. They have told him that the likelihood of recurrence is high due to the type of infection. I have read many posts on this site and some have said that the longer the hip is out people learn to adjust. Look back at some posts and hopefully this will give you more hope that things will get easier in time. I wish you good luck for the future.

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Thank you I just stressed about not getting my hip put back in see this is the second time I have got the staph infection in my left hip I was bed bond for eleven month before they put my hip and elbow back in and a year later the same thing on my right side my doctor is not putting my hip back in and that the part I having a hard time accepting it this month (December) I can start putting weight on it but I'm scared how do your husband do it is there alot of pain help me source this out I'm thinking if the doctor don't put my hip back in I will never walk again

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@jaqavious20

Thank you I just stressed about not getting my hip put back in see this is the second time I have got the staph infection in my left hip I was bed bond for eleven month before they put my hip and elbow back in and a year later the same thing on my right side my doctor is not putting my hip back in and that the part I having a hard time accepting it this month (December) I can start putting weight on it but I'm scared how do your husband do it is there alot of pain help me source this out I'm thinking if the doctor don't put my hip back in I will never walk again

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Hi Marilyn. I’m so sorry that you’ve had such a bad time. My husbands surgeon is hopeful that in January they may be able to put the hip back in, but they’ve also told him that the infection will probably come back as it’s a rare yeast and fungal infection he has…. Time will tell. He’s now able to put some weight on his other leg. If this was going to be permanent then he would probably need a shoe made due to the shortness of the leg where he has no hip. He would also need to attend some physiotherapy to build up the strength in his leg. Your doctor should explain this to you. My understanding is that a walking aid would always be required, but you should be able to walk again through time. I’m noticing changes in what my husband can now do independently more each day. My suggestion would be to speak to your surgeon and ask for some PT sessions and enquire if a shoe is required. I wish you good luck or the future and have faith that things will get better through time. If you have any questions please get in contact. Ann Marie.

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@cheryl99

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.

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Marilyn and Cheryl I completely understand what the two of you are going through I have been living without my left hip for three years now I am 41 years old and have three daughters to take care of! I have two girls in high school and one in first grade. It is hard for me to accept that they have to deal with this as well. I just hate that so much has been taken from them and put on them because of what has happened to me. I ended up falling one night while waiting to get a knee replacement and broke my femur bone in half. I went to the emergency room where they did a hip replacement and it was fine for about 2 or 3 weeks then it dislocated and I got another one, from the time I got it I had problems with it, it stayed infected and ended up getting staff. I had to be in a recovery hospital (nursing home) for 6-8 weeks then sent home on Iv antibiotics with home health. I was in the hospital for Christmas and Thanksgiving of that year. The doctor ended up taking the hip completely out and told me that I was not a good candidate for another one so I've been living like this since then. Now my other hip has started bothering me because I put so much on it.I need one of those shoes to help with the difference in size of my legs where would I even find one of those?
It's nice to know I'm not alone in this, even though I definitely feel like it at times. You all understand in a way noone else could!! It would be great to hear back from someone! Sorry this message ended up being so long just wanted to share my story with people that actually get it! LOL! Anyway thanks again for listening hope this holiday season brings you all good health and happiness!!

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@nohip2020

Marilyn and Cheryl I completely understand what the two of you are going through I have been living without my left hip for three years now I am 41 years old and have three daughters to take care of! I have two girls in high school and one in first grade. It is hard for me to accept that they have to deal with this as well. I just hate that so much has been taken from them and put on them because of what has happened to me. I ended up falling one night while waiting to get a knee replacement and broke my femur bone in half. I went to the emergency room where they did a hip replacement and it was fine for about 2 or 3 weeks then it dislocated and I got another one, from the time I got it I had problems with it, it stayed infected and ended up getting staff. I had to be in a recovery hospital (nursing home) for 6-8 weeks then sent home on Iv antibiotics with home health. I was in the hospital for Christmas and Thanksgiving of that year. The doctor ended up taking the hip completely out and told me that I was not a good candidate for another one so I've been living like this since then. Now my other hip has started bothering me because I put so much on it.I need one of those shoes to help with the difference in size of my legs where would I even find one of those?
It's nice to know I'm not alone in this, even though I definitely feel like it at times. You all understand in a way noone else could!! It would be great to hear back from someone! Sorry this message ended up being so long just wanted to share my story with people that actually get it! LOL! Anyway thanks again for listening hope this holiday season brings you all good health and happiness!!

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I don't know where you are located, but this is where I get my custom custom shoe which has a 2-1/8 inch lift it made. The name of this place is Davis Foot Comfort Center and they are located at 3921Judah ST
San Fransisco, CA 94122. The phone number is 415-661-8705 and ask to speak to Amie.
I've been getting my shoes modified there for the past 4-years and have very satisfied.
I have been living without a hip for the past 4-years and I know it does not seem like it, but it does get better.

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@nohip2020

Marilyn and Cheryl I completely understand what the two of you are going through I have been living without my left hip for three years now I am 41 years old and have three daughters to take care of! I have two girls in high school and one in first grade. It is hard for me to accept that they have to deal with this as well. I just hate that so much has been taken from them and put on them because of what has happened to me. I ended up falling one night while waiting to get a knee replacement and broke my femur bone in half. I went to the emergency room where they did a hip replacement and it was fine for about 2 or 3 weeks then it dislocated and I got another one, from the time I got it I had problems with it, it stayed infected and ended up getting staff. I had to be in a recovery hospital (nursing home) for 6-8 weeks then sent home on Iv antibiotics with home health. I was in the hospital for Christmas and Thanksgiving of that year. The doctor ended up taking the hip completely out and told me that I was not a good candidate for another one so I've been living like this since then. Now my other hip has started bothering me because I put so much on it.I need one of those shoes to help with the difference in size of my legs where would I even find one of those?
It's nice to know I'm not alone in this, even though I definitely feel like it at times. You all understand in a way noone else could!! It would be great to hear back from someone! Sorry this message ended up being so long just wanted to share my story with people that actually get it! LOL! Anyway thanks again for listening hope this holiday season brings you all good health and happiness!!

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Not Marilyn or Cheryl, but I can answer about the shoe.
My brother had a 3 inch difference in his legs, and wore a special shoe. He was referred from his doctor to an orthopedic rehab/orthoticist. There the difference was measured and his need evaluated, then he was given the names of two shoe stores and the specification for the kind of shoes he needed. Off to the shoe store, and get the shoes and bring to orthoticist, who the constructed a "built up sole" on the shoe. This exercise had to be repeated every time he needed new shoes. For many years he owned exactly 2 pair s because of the cost. As he grew, the difference lessened, and now he simply goes to our shoe repair shop and has a 1/2" addition to the sole, then slips in a 1/4" lift.

I hope this helps. Have you talked to your doc or therapist about this option?
Sue

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@nohip2020

Marilyn and Cheryl I completely understand what the two of you are going through I have been living without my left hip for three years now I am 41 years old and have three daughters to take care of! I have two girls in high school and one in first grade. It is hard for me to accept that they have to deal with this as well. I just hate that so much has been taken from them and put on them because of what has happened to me. I ended up falling one night while waiting to get a knee replacement and broke my femur bone in half. I went to the emergency room where they did a hip replacement and it was fine for about 2 or 3 weeks then it dislocated and I got another one, from the time I got it I had problems with it, it stayed infected and ended up getting staff. I had to be in a recovery hospital (nursing home) for 6-8 weeks then sent home on Iv antibiotics with home health. I was in the hospital for Christmas and Thanksgiving of that year. The doctor ended up taking the hip completely out and told me that I was not a good candidate for another one so I've been living like this since then. Now my other hip has started bothering me because I put so much on it.I need one of those shoes to help with the difference in size of my legs where would I even find one of those?
It's nice to know I'm not alone in this, even though I definitely feel like it at times. You all understand in a way noone else could!! It would be great to hear back from someone! Sorry this message ended up being so long just wanted to share my story with people that actually get it! LOL! Anyway thanks again for listening hope this holiday season brings you all good health and happiness!!

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I’m sorry you are having to go through this especially having young children. Ask your orthopedic doctor to recommend someone who can measure you to determine the height of the lift you will need. Getting the height right for someone without a hip can be tricky since there isn’t any support. Took a couple of tries for me but now that I know the right height I have the lifts done at a local shoe repair. No, the lifts aren’t cheap but well worth it. I buy new balance shoes because they are good quality and hold up great. I also buy a orthodic that helps with balance and keep heel lifts on hand in case I feel that I need a little extra lift. I use a rollator walker most of the time because I finds I can move around faster and be more self sufficient. I try not to use a cane except for short distances because I find when I use it too much because like you mentioned, I find my other hip aches because of the extra wear. Don’t get me wrong when I do house work like sweeping, vacuuming excetera I don’t goes anything and will pay dearly if I do too much at one time. I’m finding I need to really use the walker more for the right support because I back is curving some. This is probably being caused not only because their is no way to get totally support for the leg without abhip but also because of bone damage some all the radiation I had in early 2000. I you decide you want to talk sometime, I I’ll to send you my email so you can send me your number and we and schedule a time to talk. Living without a hip can be challenging but it does get better…just try to stay positive. I know that’s easier said than done but you will find little things you can do to make things better like the shoe lift, etc.

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I finally will be going to physical therapy tomorrow I'm so excited I'm ready to try and walk again

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So happy for you. I’ll keep you in my prayers that everything goes well. If you are determined, you will do fine.

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@hiplessgranny

I signed up for this forum back in December 2018. I never heard anything back until I suppose I was moved to this forum. I have had six THR and twice severe sepsis. I've been through PICC lines, ruptured PICC lines, wound debridements, wound vacs, wound vac removal, swollen leg, lymphedema, wound surgical closure, closed wound infection, aspirations, no hip, Vancomycin spacer, Vancomycin IV for twelve weeks, Daptomycin IV for twelve weeks while hospitalized for the entire time, and more.

When I wrote in this forum I was at rock bottom with the whole process. Well life was quite limited but I kept pushing myself. I found a surgeon that thought outside the box regarding what could be done. He designed a femur, ball, socket and replaced the diseased femur and pelvic bone. I'm now eight months out from this surgery. My surgeon feels confident that with regular physical therapy and reduced weight I will be able to walk without a walker or cane. I'm challenged by the pain. It's relentless. I go to physical therapy and I find the pain unbearable but I keep trying to get the end result expected. I do home exercise daily just to move. I'm exhausted all the time.

I hate complaining to the surgeon because I know he's done his best. I was told what I have is all that can be done. So I suppose you're wondering why I'm writing… well I'm tired. I'm tired of doctors whom think all my problems will work out just by losing weight and continued physical therapy. I lost weight. No change. I'm physically unable to stand for long or sit for long. I've built up a smiling face mask for times I have to sit or stand beyond my tolerable limits. I actually prefer being alone so I don't have to hide my pain.

I'm not a candidate for more surgery. I have CHF and kidney failure now. I'm in stage three. I do get regular aspirations of the hip. I find that I lose feeling in my arms while using the Walker but I've found it happens even when I recline in bed. I have bone-on-bone in both knees. Also a torn meniscus in my left leg which is my "good" leg. When I workout or walk distance, I lose my breath due to my heart/kidney issues. It's tiring. Well actually exhausting.

I guess I have just learned to accept this situation because I find it difficult to hop on one leg and my surgeon thinks I should have this THR removed and not replace it. Hey I even started up a club with my walking friends. We call ourselves the "Mingos" short for flamingos. Yes flamingos stand on one leg but at times they do hop to relocate even though they have two legs. I try to keep humor in all of this. I am researching what my life would be if I do lose this "Hail Mary" hip replacement. I spent a year without a hip and it was difficult. I managed but it meant a total commitment to survive.

If anyone has specific recommendations on living without a hip, I would appreciate it. I live alone. As it is now, I have people assisting me with daily activities. I've found it financially rough and I am now retired. I do not want to live in a personal care home, nursing home, or room somewhere because I do have my independence. I shop on-line, I get groceries delivered, I have some assistance for things I cannot do. I do get lonely at times. I'd love to talk with someone who understands living with health issues.

I'm really scared about permanently living without a hip.

Thanks for listening… If you have questions, I'll do my best to answer.

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I hope by the time you get this email, you are able to walk again

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@JustinMcClanahan

Hello @brenda02, welcome to Connect. I moved your discussion and combined it with one titled, "If you're living without a hip, please reach out to me." I did this so you could meet the members already discussing this topic. @nicoleb21809, @jgomez, and @starstruck have all recently posted about living with one or no hips and may be able to share their experiences with your above options. You may also find some useful insight in this discussion on walking without a hip joint as well, https://connect.mayoclinic.org/discussion/walking-without-a-hip-joint/.

@brenda02, you mentioned a lot of symptoms from your hip journey starting in 2018. How is your pain and mobility while fighting all of these symptoms?

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Hello,
I have had 11 hip surguries all on one one side due to infections one after another. I am now facing a girdlestone procedure as the doctors feel that i am way past my point of any more cleanups or revisions.
Does this sould like the route I should travel ? It seems like the only option I have.
Any thoughts ?
Craig

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@jaqavious20

I finally will be going to physical therapy tomorrow I'm so excited I'm ready to try and walk again

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Was thinking about you today. How are you doing with therapy? Hope you are making progress.

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