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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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I'm newly living without a hip after 8 hip surgeries to to infections in my hip ,it was replaced 4 times and in between had wound debreadments and antibiotic washes ,I was with an open wound with a wound vac on since may 2020 and covid in the middle of the 7 surgeries done in 2020 and the 1st replacement was 2019. I had to go from Ashville n.c. to be treated as the dr just gave up on me. Duke removed my hip and are hoping to put it back in when the infection is completely gone the removal was feb.25th and I just finished another brutal couse of an antibiotic I had to be desensitized to due to a severe allergy. At my check up a week ago, and was told all my inflammation markers were higher than ever. The surgeon said he may not EVER be able to put a hip back in. I'm devastated I can't even move my leg over in bed I have to lift it up to move it I can't even touch my toe to the floor for balance. I'm so confused at what to do.
@janniesims Welcome to Mayo Clinic Connect, a place to give and get support.
8 hip surgeries?! I'm so sorry. I hope that there is something that can be done for you.
Members like @tboyd273 @lippy2411 @nannypoo1960 @hiplessgranny @cheryl99 @amallasch @lynettegable @mrfish @michaeljb @michaeljb @tlserenity @starstruck @jgomez @jidetemi @cobweb @yukoner777 @lotsofpain @hopalongnm3 @sandy148 have discussed this topic in the past and may be able to offer suggestions and support.
Below I have linked a previous discussion related to this topic. You may wish to scroll through to find information and support.
- Has anyone had sharp thigh pain after hip replacement https://connect.mayoclinic.org/discussion/has-anyone-had-sharp-thigh-pain-after-hip-replacement/
May I ask if you have considered going to a teaching or specialty hospital?
In 2012 I was almost 50 years old and I began getting hip pain but my leg gave out before I knew it was that serious. I had A vascular necrosis of the hip so I sighed the paper work. I had the hip replaced in August of 2012. I woke up screaming and never stopped. I saw that my foot was just hanging and found out that I drop foot. He did however cut 3 nerves and my leg is atrophied. Then 2015 it was my other hip. So I went to a different ortho. 4 surgeries later I'm in a wheelchair with no hip. I got Mrsa while in the hospital and the final that's what put me in a wheelchair. I can't bare any weight on that side. It feels like 2 bones rubbing together. I don't think at 62 that I'm ready to try again. I wish you so much luck...... Mar
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.
Would a soft or hard brace be useful for someone without a hip?
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
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1 ReactionThank 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.
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
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1 ReactionHey 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.
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2 ReactionsI'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
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