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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@hiplessgranny

A spacer is similar to the actual hip joint. It's generally impregnated with an antibiotic for direct infection reduction in addition to the IV antibiotics. A spacer isn't as strong as the actual hip joint but it supports the area until the next surgery. Some people keep a spacer for years but it does have restrictions. You normally can not put full weight on it. If you do, it can go out of alignment or fracture. That is painful! Later a decision can be made to surgically place a new joint.

I have had multiple surgeries that involved infection and spacers and once no hip. I've dealt with severe MRSA sepsis and later reoccurring infection. I'm currently doing well with the fourth real hip prothesis. I did have twice a spacer. Once no hip. I'm happy I had the last hip surgery. I'm still working through physical therapy. The last prothesis did cause a lengthening of my leg so I am using a lift for my shorter good leg. Yes I did have doubts before I did this last surgery but I didn't want to deal with a wheelchair and/or inability to get around only with crutches or walkers. I do still use a walker but recently I made progress on walking with a cane for short distances around my home.

I'd be happy to help with supporting anyone with any questions you might have.

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Hi such horrible stories from everyone
Thanks for your words and about the spacer
Did you have a brace of some sorts ?
So you must of put weight on spacer and something happened for you to say painful ! That scares me as dislocations are very painful 2 🥺 I’m not sure to ask for one …rock and hard place ! Cause a no hip and it moving around is hard to imagine 2 ?
Thanks

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There isn't any brace involved with a spacer. It looks just like a hip replacement surgery. The spacer is not meant for heavy duty normal activities. The spacer simply is a way to allow the antibiotics to be in the infected area as a direct application boost. Yes it can dislocate or fracture just like a hip joint. Yes it hurts just like a hip fracture if fractured or dislocated. The idea of a spacer provides support connecting the bone to the pelvic area just like a hip joint. It can handle weight but not the same level as a joint. It has major advantages. I had two spacers. Would I do it again? Yes! The spacer provided the antibiotics and support I needed. The first spacer after care instructions were very restrictive. It was removed when the surgeon was told the infection was gone. The surgeon was actually performing the hip prothesis surgery when it was discovered that the infection was still in the area so he placed the second spacer. After this surgery I had less restrictions. Apparently this spacer allowed more normal.activity so I actually had more freedom. Unfortunately I had a heart surgery three months later where I had informed the staff I still had hip precautions but they somehow didn't understand what that meant and as I was transferred from the surgery table to be transported my hip was dislocated. This caused another surgery but not immediately. I spent three months in the hospital until I was stabilized. First thing needed was to complete the IV antibiotics but actually a newer stronger antibiotic was used. Second concern was the need to stop the blood thinner used after the heart surgery. That was why the three months. Both of these are not the normal process but actually the exception so don't fear a spacer. The best thing a person can do is fully.trust your surgeon and discuss your needs and options. My surgeon took on a difficult case. I trust his decisions. I am able to walk now and that was thought by other surgeons I would never do.

I realize it's not easy to go through any surgery. I'm realistic and realize I have a strong part in the outcome too. It's important to listen to your doctor. It's important to do your physical therapy. There will be good and bad days. Hang tough and know what you want as an end result because you actually control the outcome more than anything else. The surgeon can perform the mechanics of the joint but the patients mind determines the full outcome. It's not easy but it's doable.

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Ok that answers my question
Is so bad that so many have so many horrible medical problems
I will ask my surgeon about the spacer
I have a hip brace on at the moment until I have something done as it just feels loose since my dislocation 3 weeks ago , not 100% sure it actually helps but it does make me feel more confident. I am getting a aspiration in a week and hopefully the results after 14 days are good …..gotta stay hopeful ah .
They have knee straps that help support knees but as yet have not found a more comfortable brace than what I’ve got , does anyone know of any good braces ?
Thanks

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@heatherafraire

Hi my name is heather I had two hip relplacements on left hip after the second one I got an infection and had to have another opperation to clean out the wind and it was packed with antibiotics when I went home after that operation I fell and shattered my pelvis on left side they took out the hardware and placed a spacer and the plan was to remove the spacer and put hardware back but be for that the Dr took fluid from my hip and said there is bacteria there no infection but he said that he couldn’t put hardware back and completely took out the spacer which has left me with no hip joint at all on left side. I was walking somewhat because after everything my left side was still my stronger side. But last week I got sick and was in bed for a few days. Saturday I tyres to get up and had lost a lot of strength in my left leg and my arms. It scares me because I can hardly get up now I have had 7 surgeries on right leg also so that is not strong eather

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Heather, when my hip was removed I was very sick from bacteria all over my body from a cat bite. I could not get up to bath or do anything I was so weak. My husband had to help me do everything. Don’t give up….have your doctor order therapy for you…may need to be in home first (but try to push yourself to go in as soon as possible. The longer you wait the more difficult it will be. I hope you start improving soon….I know it is difficult but don’t give up.

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@heatherafraire

Hi my name is heather I had two hip relplacements on left hip after the second one I got an infection and had to have another opperation to clean out the wind and it was packed with antibiotics when I went home after that operation I fell and shattered my pelvis on left side they took out the hardware and placed a spacer and the plan was to remove the spacer and put hardware back but be for that the Dr took fluid from my hip and said there is bacteria there no infection but he said that he couldn’t put hardware back and completely took out the spacer which has left me with no hip joint at all on left side. I was walking somewhat because after everything my left side was still my stronger side. But last week I got sick and was in bed for a few days. Saturday I tyres to get up and had lost a lot of strength in my left leg and my arms. It scares me because I can hardly get up now I have had 7 surgeries on right leg also so that is not strong eather

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Heather, you must keep doing physical therapy for the rest of your life especially after any illness. It's the only way you can maintain your functions. I had physical therapy at home then moved into the outpatient facility to continue. I now have a home program and I do follow it because if I don't, I lose functions. It sounds like your illness set you back so please call the doctor to get a order for physical therapy. Unfortunately the infection colonizes inside the weakest point in your body and whenever you get sick it takes a toll on your body. There are exercises you can do while in bed then proceed to a chair then standing at a firm counter or even just walking around the house. Later at a outpatient facility there is equipment that helps strengthen your body. Just don't give up… Do the exercises in increments and add as you find it becomes easier. The one thing about exercises for those of us living with post infection surgeries… it keeps building our immune system and our bodies.

When I was hipless, I managed hopping with a walker to get around small areas. I just had to recognize my abilities. My physical therapist helped me learn my abilities. You please recognize your abilities and don't give up on your situation.

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I have been without a hip since September 2019 and tonight something told me to look it up how do people live without a hip I read your post and I feel for you if you see this reply please let me know how you're doing thank you

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@anonymous122054

Thank you for taking the time to welcome me to the connect.:)

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Hey..Yes..my mother survived three cancers..One in pelvis one in L4 and L5 and one in breast..Her left iliac bone completely got degenerated due to radiation..she received a hip replacement in 2016 but it broke in 2017..so now they have removed the entire ball socket thing and she is technically without a hip.
she walks with a walker..Ur not alone..

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My mom is going through this . She was about your age when it happened and she is 60 now. It’s terrible. I would love to get a new hip in there but I don’t know if her body will accept it.

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@anonymous122054

Still wanting to hear from anyone living without a hip joint, for life. I can’t possibly be the only one? If you are or know someone who is please contact me. I really need some guidance and ideas from others with the same condition. Thanks, 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.

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@janniesims

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.

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@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?

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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

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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.

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