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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 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.
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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2 ReactionsI’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.
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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1 ReactionSo happy for you. I’ll keep you in my prayers that everything goes well. If you are determined, you will do fine.
I hope by the time you get this email, you are able to walk again
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
Was thinking about you today. How are you doing with therapy? Hope you are making progress.
I'm doing really good I'm able to get around better by my self leg are more stronger and I'm actually using crutches instead of the wheel chair I'm very happy with my progress thanks for asking
This is an old post - how are you doing now Robin? I have been without a hip since December 2019. Female aged 58 - I'd be more than glad to share my experiences with you if you'd like - 13 hip surgeries; 3 separate implant infections - multiple dislocations - yup have seen it all.
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