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If you're living without a hip like me, please reach out to me.....
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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Search fora surgeon. Have had four hip surgeries, am almost 80 and not moving off my farm because I have EDS full blown and can not find doctors that know or wish to know about the syndrome. Should you have it, there is an EDS WEB page to help locate a doctor. Major hospitals usually have one but finding out which one is a challenge.
God bless.
Can you work with a hip spacer in or get down in the tub
Welcome, Tracy. I moved your question about mobility with a hip spacer, like getting into a tub to this existing discussion
- If you're living without a hip like me, please reach out to me..... https://connect.mayoclinic.org/discussion/if-youre-living-without-a-hip-like-me-please-reach-out-to-me/
I did this so you can read the previous posts and connect easily with fellow members like @sueinmn @jholland @jaqavious20 @koala78 @cheryl99 @trinab47 and many others who have experience with a hip spacer.
You might also be interested in this related discussion:
- Walking without a hip joint https://connect.mayoclinic.org/discussion/walking-without-a-hip-joint/
Tracy, while we wait for others to join in, can you share a bit more about you? When did you get the hip spacer placed? How are you doing?
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2 ReactionsMy wife had Total Hip Replacement in 2019, and it became infected. After, 3 wash out surgeries and 21 weeks of IV antibiotic treatment for Pseudomonas aeruginosa, the hip prosthesis had to come out. She, has no hip socket, a shaved down pelvis and chopped off femur. She is unable to walk, but could stand if holding on to a stable piece of furniture. Also, unable to go to the bathroom without be assisted.
I thank God, that she is still a live but; life is very tough with all the Covid Virus and her being immune compromised.
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1 ReactionMy soul sends strength.
Sorry your wife had to go through this….I also had my hip and part of my pelvis removed. I was in a wheelchair for a while because of this and being chick from infection…..but I had a good therapist who knew I desperately wanted to walk and be as independent as possible. She worked me hard but I can walk with a rolling walker, and a shoe with a lift that helps with the shorter leg. I can walk a little with a cane but can get around really well with the walker. I drive, cook and clean my home…maybe not as well as I use to, but pretty good……i feel blessed because we didn’t know if I would be able to walk. I don’t know your wife’s total condition but if she is pretty healthy other than the hip and she is strong willed…I would encourage her not to give up, find a good therapist that will push her with the exercises she needs to do to build her muscles so maybe she will be able to use a walker….and get a good pair of sneakers to have a build up added…..her orthopedic should be able to refer her to the right place to be measured and have the right height buildup added…….I wish you both the best.
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4 ReactionsThank you for sharing. It’s hard to find information on this subject. I’m going to have my hip removed after 5 failed replacements in 2 mos. I’m just praying that I’ll have some mobility. It’s very depressing not knowing what your future holds. My husband is very supportive and I’m so thankful for for him. I couldn’t imagine going through this alone. I pray both our futures get better.
I pray & hope for you both…good luck!
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1 ReactionI had a left hip replacement July 13th of 2022 since then I have had eight dislocations and two other surgeries . My hip dislocates or within a drop of a hat, it seems like for the simplest things of getting on and off a toilet getting in bed so I can understand how you must feel. I too am alone I have a small circle of friends one lives across the hall for me and he takes care of me(and it's been known to happen many a times) 24/7. In Nevada if you have Medicaid which I have applied for it maybe I can get my friend paid. I live off of social security only in the little bit I pay him I had to quit because I need the money for medical and medicine so I don't know what I would do without him. It's called here in Nevada Freedom Care and C.O.P.E. Beach programs are supposed to keep you out of the hospital. You might look into something like that to see if you can find someone it sounds like you would qualify. The lady from the state is coming to evaluate me on December 7th if she has anything but I can relate to you I will. My orthopedic surgeon tells he has no alternative but to remove the hip. I'm trying to find a second opinion but it's like pulling teeth to get anyone to talk to me because my last revisionsurgery hasn't even been at least a year. So I can understand your dilemma as far as surgeons. As far as giving you advice on living without a hip I don't know yet but that's all I think about I'm in a wheelchair now because the pain is so great I can't even try to walk by myself I have to have someone present all the time because I'm afraid I would just popping out. Sometimes that's hard to do. I have heard of a doctor orthopedic surgeon that practices in California in the San Diego. the name of his medical center is Scripts and the Doctor who did my friends hip. James and a man that lives in my apartment said that that is one of the best clinics in the United States and that even movie stars go there. I have had no experience with this man but this is just what a couple of people a couple of people is telling me.
I wish you the best of luck I hope you're pain gets better I know how it is there is a heavenly purpose for something like this that has been given to you and I and I hope with all my heart that you recover quickly and your pain goes away and that's your mindset gets where it sounds like I know it should be
If you would like to communicate further about this I would love to hear from you. I normally don't do this but you can reach me on Facebook if you can load it on your phone if not call me 702-801-7626 I'm going to post it
Nancy
Henderson Nevada
Omg !!! Iam from Seattle alot of yr story sounds just like mine. I've been living without a hip since May 22 currently back in hospital infection is back again. Or I should say dumbest doctors dontvknow what there doing and never really got all infection first time.