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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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Robin
So sorry you are having these ongoing issues. I too have a spacer due to ongoing infection in my hip
I can only toe touch my left leg so I can’t really do much only
With a walker
I have an adult son who has to live with me to help
It’s awful
But I don’t have pain from the spacer
I have good surgeons but not sure about my future hip will be
I had about 9 hip revisions in past 20 years
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1 ReactionHi Robin!…my sister had a lot of similar issues to you. She went to a doctor who told her the only choice was Orto revision. She had that done and she can’t bend more than 70 degrees but is living alone and doing fairly well. She is on a permanent- more or less- PT twice a week and that is also very good for her emotionally and physically. She can only drive a 10 mile radius as the driving position is rough. But she does it!….you might want to look into Orto.
Anxiety is also probably causing you problems. You maybe should look at the clinical signs on line and if you line up, then ask for a trial dose of something to help you. the one I am on is Effexor time released. Life changing!!…
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1 ReactionHi Robin, I’m so sorry to hear of your complications with the hip. Mi r to got infected. I got to keep my hip though. They washed it out replaced parts and put me on an iv antibiotic for 6-7 weeks. Then on oral antibiotics for a year. I’m currently awaiting a second hip
Surgery on the other side. So are there any hope of you getting another hip? I sure hope so
I’d hate for you to
Be so limited so young.
Prayers coming your way.
Good luck to you
Hey Mrs Robin my name is star and in 2021 I had a bad wreck which crushed my hip they rebuilt it twice then it dislocated and I now don't have aa hip. I just turned 38 this year and now my left the opposite side is going out. I'm over weight so they refuse to do a hip replacement I took am looking for friends or support and more info on people living this way. Hope to hear from you soon
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2 ReactionsI am so sorry Robin. You are not alone. I never heard of anyone without a hip until I had it. I went in for a routine left hip replacement and woke up with a drop foot and 2 days later the hip fell apart. They made me a revision but I had sepsis and almost died. That’s when the surgeon told me had to take out the hip altogether. I have gone to PT and it’s helping but won’t be the same. They had given me antidepressant medication but I won’t take it since I’m feeling a little better. My surgeon made it seem like people have had no hip and do well and I might have a little limp. That is not the case. I have had a lift on my shoe to balance me out which is helpful but the lift makes it heavy to move the foot and the foot drop as well. I am hoping one day that there is a possibility of putting a new hip in but I just had the surgery 6 months ago. I have to give myself time to heal mentally and physically. I have a wonderful supportive family and a great husband. Couldn’t ask for anything else and that’s what keeps me going. I will pray for you🙏💕
Hello star38. I am so sorry to read about your condition and at such a young age. I am 71 and lost my hip 18 months ago due to severe infection. I can never have another implant, but I am able to get around with very little pain. I use a walker in the home and crutches when I go out. I do exercises every day to keep my strength up in my legs and my husband has made shoes for me by gluing soles off one shoe onto another to balance out my legs. I too have gained a lot of weight after this happened to me and it is very frustrating to try and lose weight. I was so active before this happened to me. I was riding my upright exercise bike for 8-10 miles a day for the past 6-7 months, but I recently tore the meniscus in my left knee (good leg) so I'm letting that heal before I bike ride again. Try to stay strong and exercise as you can so one day if they figure out how to fix our hips again, you will be in good shape for that! If you want to send me a private message through this Mayo forum, that is fine with me, I'll be praying for you....Cindy
You need more than one opinion as I am sure you know.
Does Mayo have or can they recommend a specialist??
A top ortho woman or man in the U.S.= travel if you have to!
Loosing weight is so difficult but you are so young, it will be
good for any health problems you have. It helped me recover from
2 surgeries.
Sounds simple but your local library should be able to deliver books to you,
both real ones you can hold or that you can listen to or read on your computer.
One summer I was bed ridden & read thru the whole Ann Perry series on Hester,
the nurse...can't remember the exact titles, BUT it was ,as they say,
"A GOD SEND",or an angel, or a reincarnated librarian but you get the picture.
Books, esp. fiction will take you out of yourself for awhile & may give you
some ideas for your future, kayray
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1 ReactionHi Robin, you are definitely not the only one. I'm a 58 year old woman who reached the end of surgical options on my hip as well. Four months ago my artificial hip was removed permanently and I also now have to learn how to live without a hip. I'm really amazed by your mobility at this stage of your recovery! That's very promising and being able to get around must be helping with your mental health. I'm still mostly bedridden but I also have rheumatoid arthritis which is a large part of why I have very limited mobility right now. I also went through many of the same things you did. It's been frustrating because this type of surgery is so rare that it's hard to find any medical providers who have experience with patients in our "condition".
I lucked out and was assigned a home PT who has been amazing. I've learned so much from him and my progress out of bed is largely due to him. I've always been a big believer in PT, and especially in our case, I think it's critical for maximizing mobility. I'm also getting a lot of help from my occupational therapist. She's been able to suggest equipment and mobility aides that will increase my ability to be out in the world. I highly recommend making use of these two resources to the most and they are probably available to you through your insurance.
Let's stay in touch, and please remember you not alone. I was told the emotional part of this surgery is the toughest. You never had a chance to mentally prepare for this surgery so I can only imagine how much harder it hit you when you lost the mobility you were used to. Keep up the good fight! Janeen
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1 ReactionOh my gosh. I'm sorry that I can't offer any help since I have no experience regarding any of this but I wanted to let you know that my heart breaks for all you've been through and continue to go through. My prayers are with you.