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

Hello, my name is Michael (60 yrs old) and I am in a similar situation. They have recently took out my hip joint and I am trying to learn hoe to walk without it. It seems difficult as hell. my story is a little similar. came into the VA hospital in Houston Tx. with osteoarthritis and advanced d-generated hips.
3 surgeries 4 dislocated, then caught a Staph infection so they did a fourth surgery except they left the stem in and put another ball and cup liner in. and that one gave me big problems so I complained and the doctor from the antibiotics dept. were supportive because the antibiotics couldn’t rid the infection, so they went in again and took it all (equipment) out. Put the spacer etc. So they tell me. but an intern or Doctor told me they took my some of my muscle and balled it up and stuck it in the joint cup. The top of my left thigh fattens when I do PT. (presently still in the hospital) and the fatness only goes down halfway. My right hip needs replacing too but I doubt that will happen soon. I have been told conflicting stories and still trying to find out more information; for Non Service connected disability, will I get another shot at another hip replacement, when could it be and what about my right hip and knee. A total of five surgeries since July 7, 2017.. Anyway, this is my first time researching this matter and I used to be work living on farm/ranches England horse ridding and showing. that was 25+ yrs. ago so I understand your feelings to get back into that environment. Between you and me, your the more experienced in this matter.
I’m presently trying to get a rating on this disability plus my lower back and knees. in the first 3 surgeries they made my left leg 2″ taller, in the last surgery ( Dec. 1, 2017 and 5th surgery since July 7, 2017)after taking the hip joint equipment out and cutting some of my femur bone off. I’m still not strong enough to walk far without my arms giving out., so I’m still using a wheel chair. I will be doing searches on the web to hear other peoples stories and find out how life is, say a year latter or more. I will share what I find with you if you like My prayers are with you. Stay strong and don’t lose hope..

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@michaeljb

Hello, my name is Michael (60 yrs old) and I am in a similar situation. They have recently took out my hip joint and I am trying to learn hoe to walk without it. It seems difficult as hell. my story is a little similar. came into the VA hospital in Houston Tx. with osteoarthritis and advanced d-generated hips.
3 surgeries 4 dislocated, then caught a Staph infection so they did a fourth surgery except they left the stem in and put another ball and cup liner in. and that one gave me big problems so I complained and the doctor from the antibiotics dept. were supportive because the antibiotics couldn’t rid the infection, so they went in again and took it all (equipment) out. Put the spacer etc. So they tell me. but an intern or Doctor told me they took my some of my muscle and balled it up and stuck it in the joint cup. The top of my left thigh fattens when I do PT. (presently still in the hospital) and the fatness only goes down halfway. My right hip needs replacing too but I doubt that will happen soon. I have been told conflicting stories and still trying to find out more information; for Non Service connected disability, will I get another shot at another hip replacement, when could it be and what about my right hip and knee. A total of five surgeries since July 7, 2017.. Anyway, this is my first time researching this matter and I used to be work living on farm/ranches England horse ridding and showing. that was 25+ yrs. ago so I understand your feelings to get back into that environment. Between you and me, your the more experienced in this matter.
I’m presently trying to get a rating on this disability plus my lower back and knees. in the first 3 surgeries they made my left leg 2″ taller, in the last surgery ( Dec. 1, 2017 and 5th surgery since July 7, 2017)after taking the hip joint equipment out and cutting some of my femur bone off. I’m still not strong enough to walk far without my arms giving out., so I’m still using a wheel chair. I will be doing searches on the web to hear other peoples stories and find out how life is, say a year latter or more. I will share what I find with you if you like My prayers are with you. Stay strong and don’t lose hope..

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Hello, it’s Robin (froggyone) I just re-read your message and I’m trying to figure out what to say. First off, I hope you’re out of the hospital and are on the mend. I can’t give you medical advice on whether you should have more surgeries. I’m the wrong person to ask about that because I’m very angry about the way things happened to me over the course of 4 surgeries and 2 staph infections. It’s crazy to me to read about people that have had 6,7 or 8 surgeries and 6 or 8 staph infections because I had 2 of them and I don’t want to ever have another procedure done, no matter what it’s for, because I’m far too scared. I can’t go through that again ever. I’m also extremely bitter and sad because I’ll never be able to work on a horse farm again. I was really in my element there and I loved it so much. I also had a housecleaning/organizing/packing,moving business for 25 year and I’m used to being strong and mobile. I loved all that work too. I can’t even fathom what I’m going to do for the rest of my life. I’m bored stiff. I am very determined to get another job, since I love animals so much it will probably be with animals. I never had to use a wheel chair. In fact, within 2 days of the final hip removal I was up and chomping at the bit to get moving. I even practiced on the stairs! My surgeon was blown away. Do you think you’ll have to stay in a wheelchair? I hope eventually you are able to use a walker, cane or even crutches. I have some good advice for you for when you start using a walker. Get back to me when you have a chance and let me know how you’re doing and when you get to go home. I’ll give you any pointers you may need. Or just listen to your worries or concerns. Take care, Robin

Liked by mrfish

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You’ve found another one hip wonder. No hip since dec 2018. 13 hip surgeries- 3 separate bouts of different infections plus dislocations. How r you doing now? Oh i’m 55.

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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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Hi, I’ve had multiple surgeries on my hip. 3 debridements since August. I have 2 infections in hip. A wound draining but almost closed. I’ve been told Hip hardware has to come out. Not able to put new hip in. I had to go see a plastics surgeon to see even if hip could be taken out due to a “flap” needing to be made for closure. That part of the Surgery is very brutal! 18 inches off my back to build flap. I am waiting to see if Mayo hospital could possibly help. Im going to start palliative care. This pain is unbearable! All my life consists of us Doctors!!! No quality of life! I’ve had 26 operations on my body. Mainly due to complications from car accident at age of 12. I’m now 49. Every time I have surgery, I develop a 2nd condition and on and on it goes! My body looks like a road map! I’ve been told no possibility of a new hip put in due to not enough bone to work with. I’ve been told that I would barely be able to walk. I have other damage to back, knees… I’m done with surgeries. No cement spacer. Now I have to watch for Sepsis.

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Robin, take heart, there are others in same or similar situations. First of all, are you on Disability. If not you should be. No one could need it more. Please check asap cuz you would. I have had approximately 4 hip surgeries starting from hip replacement that became infected and had to be removed followed by spacers, 7 week iv meds. At this point they don't recommend another revision because surgron thinks there may be dormant infection lurking inside which eould start the whole nightmare again. At this point I am having rehab ordered by the doctor to strengthen my muscles at empty hip area. I have read on this newsfeed anout 2 people that were able to get around with walker and one lady possibly be able to use a cane. People have said to me "I don't know how you do it" and I either say or think that you do it because there are no otjer options except laying down and giving up. I am a survivor and will NOT GIVE UP.. I walk with a walker and sometimes use a scooter although PT prefers walker to gain strength.
I too have a dog, also a rescue and cannot imagine being without her. She is my deae friend. My husband and I are retired and our 70's. Please stay tough and use any socias l services that can be available to you. God Bless You and I will pray for you too. Please be in touch.

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@starstruck

Robin, take heart, there are others in same or similar situations. First of all, are you on Disability. If not you should be. No one could need it more. Please check asap cuz you would. I have had approximately 4 hip surgeries starting from hip replacement that became infected and had to be removed followed by spacers, 7 week iv meds. At this point they don't recommend another revision because surgron thinks there may be dormant infection lurking inside which eould start the whole nightmare again. At this point I am having rehab ordered by the doctor to strengthen my muscles at empty hip area. I have read on this newsfeed anout 2 people that were able to get around with walker and one lady possibly be able to use a cane. People have said to me "I don't know how you do it" and I either say or think that you do it because there are no otjer options except laying down and giving up. I am a survivor and will NOT GIVE UP.. I walk with a walker and sometimes use a scooter although PT prefers walker to gain strength.
I too have a dog, also a rescue and cannot imagine being without her. She is my deae friend. My husband and I are retired and our 70's. Please stay tough and use any socias l services that can be available to you. God Bless You and I will pray for you too. Please be in touch.

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Robin, I forgot to mention that my name is Nancy.

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I had my hip removed in 2016, I get it, my life is so different. I moved from Portland Oregon cuz of costs. I live in TX now. Was very lucky my Surgeon at OHSU had done this twice befire me.
Would love to connect
janerest@gmail.com

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I have only one hip also!

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@nicoleb21809

I have only one hip also!

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Would love to hear more.

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I have had my first right hip replaced in 2006. My left hip was replaced in 2010. I started having issues with the right hip in September 2018, where they did a scrub. Next surgery was May and August doing a 2 stage Prostelac. Then developed a 2 1/2 liter hematoma removed November 15th, then another scrub November 27th. My surgeon has given me 3 options. 1) long term antibiotics 2) start over replacing hip again ( surgery #7 and he doesn’t want to do any more surgery on me) or 3) take hip out completely. I’m trying to make an informed decision. Last surgery was Nov 27, 2019 and still leaking blood and serous fluid.

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Hello @brenda02, welcome to Connect. I moved your discussion and combined it with one titled, "If you're living without a hip, please reach out to me." I did this so you could meet the members already discussing this topic. @nicoleb21809, @jgomez, and @starstruck have all recently posted about living with one or no hips and may be able to share their experiences with your above options. You may also find some useful insight in this discussion on walking without a hip joint as well, https://connect.mayoclinic.org/discussion/walking-without-a-hip-joint/.

@brenda02, you mentioned a lot of symptoms from your hip journey starting in 2018. How is your pain and mobility while fighting all of these symptoms?

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Oh my goodness, your story is almost exactly the same as mine, have had to have two replacements dislocated once in and got horrible staph infection which had me also close to death, which ended up on home health for 6 months with a picc line having to give myself home IV antibiotic treatments. I am 39 years old and have three daughters, 5, 13, and 16 years old.I am on a walker now and believe this stuff they say about you can live without a hip and walk normal after 6 months is BS, it has been almost a year for me and I'm still on a walker if I try to walk without it, the difference in the length of my legs makes it hard to do because it put so much on my back and that I just end up in too much pain. I would love love to hear from you, please if this message reaches you send me an email back. As I'm sure you know it's very hard to find people that are living the same way we are you are honestly the first person I found! Look forward to hearing from you take care and hope things are going well for you!

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I am so excited to have found all of you living the same situation / nightmare I am. Not that I want anyone else to have to live like this oh, but just gives me hope, makes me feel better then I'm not the only one. My doctor never told me about a spacer, he's not a very nice doctor and told me after he took my last replacement out that he would not work on me again that I will need to learn to live without the hip that happened at this time last year. Then went through 6 months of intensive home health, after going through a month-and-a-half of rehab. That was all this time last year, so I've been on a walker since then I have a daughter in kindergarten one in middle school and one in high school and it's been really tough on them also. I'm so glad to have found all of you. Please any of you that read this and want to talk, reply back to me. thank you all so much for sharing your stories I don't feel as alone anymore! God bless all of you and hope you're all doing much better!

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@nohip2020

I am so excited to have found all of you living the same situation / nightmare I am. Not that I want anyone else to have to live like this oh, but just gives me hope, makes me feel better then I'm not the only one. My doctor never told me about a spacer, he's not a very nice doctor and told me after he took my last replacement out that he would not work on me again that I will need to learn to live without the hip that happened at this time last year. Then went through 6 months of intensive home health, after going through a month-and-a-half of rehab. That was all this time last year, so I've been on a walker since then I have a daughter in kindergarten one in middle school and one in high school and it's been really tough on them also. I'm so glad to have found all of you. Please any of you that read this and want to talk, reply back to me. thank you all so much for sharing your stories I don't feel as alone anymore! God bless all of you and hope you're all doing much better!

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There's more than me out there; there's more than me out there; there's more than me out there!!!! LOL And we're both young – well youngish – you more so than me. Pls email me pfwalker@accesscomm.ca to chat more or find me on facebook. There is soooo much we can discuss – whoever told you one can walk "normal" without a hip is cuckcoo! It is almost physically impossible – one would still likely need a cane at least or they have a heck of a lot of scar tissue holding them up – and yes the leg length difference is also a huge factor – I have about a 2-3 inch difference – I've always had one leg shorter than the other and with the many replacements that difference has changed over time both for better and worse – worse though is definitely now – I have shoes with a raise on the one and we had to increase it this last time to about a 2 inch lift. Still there is uncomfortable difference so to ease it a bit indoors I wear my raised shoe on my hipless side and bare feet on the other – it looks ridicously stupid but it works! I have a warped sense of humor anyway so I just go with the flow with this. LOL So much more to share…………………………….

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@koala78

There's more than me out there; there's more than me out there; there's more than me out there!!!! LOL And we're both young – well youngish – you more so than me. Pls email me pfwalker@accesscomm.ca to chat more or find me on facebook. There is soooo much we can discuss – whoever told you one can walk "normal" without a hip is cuckcoo! It is almost physically impossible – one would still likely need a cane at least or they have a heck of a lot of scar tissue holding them up – and yes the leg length difference is also a huge factor – I have about a 2-3 inch difference – I've always had one leg shorter than the other and with the many replacements that difference has changed over time both for better and worse – worse though is definitely now – I have shoes with a raise on the one and we had to increase it this last time to about a 2 inch lift. Still there is uncomfortable difference so to ease it a bit indoors I wear my raised shoe on my hipless side and bare feet on the other – it looks ridicously stupid but it works! I have a warped sense of humor anyway so I just go with the flow with this. LOL So much more to share…………………………….

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I will be in touch soon. Off to the hospital for dressing change again.=20

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