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

Interested in more discussions like this? Go to the Bones, Joints & Muscles group.

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.

REPLY

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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@JustinMcClanahan

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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My pain level is moderate but once it starts, I have difficulty calming it down. I am able to walk without aid for very short distances like in the house. When I am out I always use my walker. I just started driving again which gives a person more confidence. My biggest concern is the leakage. This has been going on since 2018 and they haven't stopped it. If the wound heals over, it collects inside resulting in a hematoma. My 1st infection was Haemophillus influenzas, the 2nd was Staphyloccus epidermidis.
Has anyone else had an open wound draining? We still visit the hospital 3 x's a week and my husband does the rest of the wound dressings.
I am trying to rule out all possibilities like allergy testing (still need to be tested for metals), internist (waiting on bloodwork results), my body is full of osteo arthritis but my Rheumatologist feels that is not contributing anything to this situation, and I am waiting on the information from the hospital where I had both original hip surgeries done to advise the manufacturer and components of each.
Has anyone else leaked continuously, and how did they stop it?

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I signed up for this forum back in December 2018. I never heard anything back until I suppose I was moved to this forum. I have had six THR and twice severe sepsis. I've been through PICC lines, ruptured PICC lines, wound debridements, wound vacs, wound vac removal, swollen leg, lymphedema, wound surgical closure, closed wound infection, aspirations, no hip, Vancomycin spacer, Vancomycin IV for twelve weeks, Daptomycin IV for twelve weeks while hospitalized for the entire time, and more.

When I wrote in this forum I was at rock bottom with the whole process. Well life was quite limited but I kept pushing myself. I found a surgeon that thought outside the box regarding what could be done. He designed a femur, ball, socket and replaced the diseased femur and pelvic bone. I'm now eight months out from this surgery. My surgeon feels confident that with regular physical therapy and reduced weight I will be able to walk without a walker or cane. I'm challenged by the pain. It's relentless. I go to physical therapy and I find the pain unbearable but I keep trying to get the end result expected. I do home exercise daily just to move. I'm exhausted all the time.

I hate complaining to the surgeon because I know he's done his best. I was told what I have is all that can be done. So I suppose you're wondering why I'm writing… well I'm tired. I'm tired of doctors whom think all my problems will work out just by losing weight and continued physical therapy. I lost weight. No change. I'm physically unable to stand for long or sit for long. I've built up a smiling face mask for times I have to sit or stand beyond my tolerable limits. I actually prefer being alone so I don't have to hide my pain.

I'm not a candidate for more surgery. I have CHF and kidney failure now. I'm in stage three. I do get regular aspirations of the hip. I find that I lose feeling in my arms while using the Walker but I've found it happens even when I recline in bed. I have bone-on-bone in both knees. Also a torn meniscus in my left leg which is my "good" leg. When I workout or walk distance, I lose my breath due to my heart/kidney issues. It's tiring. Well actually exhausting.

I guess I have just learned to accept this situation because I find it difficult to hop on one leg and my surgeon thinks I should have this THR removed and not replace it. Hey I even started up a club with my walking friends. We call ourselves the "Mingos" short for flamingos. Yes flamingos stand on one leg but at times they do hop to relocate even though they have two legs. I try to keep humor in all of this. I am researching what my life would be if I do lose this "Hail Mary" hip replacement. I spent a year without a hip and it was difficult. I managed but it meant a total commitment to survive.

If anyone has specific recommendations on living without a hip, I would appreciate it. I live alone. As it is now, I have people assisting me with daily activities. I've found it financially rough and I am now retired. I do not want to live in a personal care home, nursing home, or room somewhere because I do have my independence. I shop on-line, I get groceries delivered, I have some assistance for things I cannot do. I do get lonely at times. I'd love to talk with someone who understands living with health issues.

I'm really scared about permanently living without a hip.

Thanks for listening… If you have questions, I'll do my best to answer.

REPLY
@hiplessgranny

I signed up for this forum back in December 2018. I never heard anything back until I suppose I was moved to this forum. I have had six THR and twice severe sepsis. I've been through PICC lines, ruptured PICC lines, wound debridements, wound vacs, wound vac removal, swollen leg, lymphedema, wound surgical closure, closed wound infection, aspirations, no hip, Vancomycin spacer, Vancomycin IV for twelve weeks, Daptomycin IV for twelve weeks while hospitalized for the entire time, and more.

When I wrote in this forum I was at rock bottom with the whole process. Well life was quite limited but I kept pushing myself. I found a surgeon that thought outside the box regarding what could be done. He designed a femur, ball, socket and replaced the diseased femur and pelvic bone. I'm now eight months out from this surgery. My surgeon feels confident that with regular physical therapy and reduced weight I will be able to walk without a walker or cane. I'm challenged by the pain. It's relentless. I go to physical therapy and I find the pain unbearable but I keep trying to get the end result expected. I do home exercise daily just to move. I'm exhausted all the time.

I hate complaining to the surgeon because I know he's done his best. I was told what I have is all that can be done. So I suppose you're wondering why I'm writing… well I'm tired. I'm tired of doctors whom think all my problems will work out just by losing weight and continued physical therapy. I lost weight. No change. I'm physically unable to stand for long or sit for long. I've built up a smiling face mask for times I have to sit or stand beyond my tolerable limits. I actually prefer being alone so I don't have to hide my pain.

I'm not a candidate for more surgery. I have CHF and kidney failure now. I'm in stage three. I do get regular aspirations of the hip. I find that I lose feeling in my arms while using the Walker but I've found it happens even when I recline in bed. I have bone-on-bone in both knees. Also a torn meniscus in my left leg which is my "good" leg. When I workout or walk distance, I lose my breath due to my heart/kidney issues. It's tiring. Well actually exhausting.

I guess I have just learned to accept this situation because I find it difficult to hop on one leg and my surgeon thinks I should have this THR removed and not replace it. Hey I even started up a club with my walking friends. We call ourselves the "Mingos" short for flamingos. Yes flamingos stand on one leg but at times they do hop to relocate even though they have two legs. I try to keep humor in all of this. I am researching what my life would be if I do lose this "Hail Mary" hip replacement. I spent a year without a hip and it was difficult. I managed but it meant a total commitment to survive.

If anyone has specific recommendations on living without a hip, I would appreciate it. I live alone. As it is now, I have people assisting me with daily activities. I've found it financially rough and I am now retired. I do not want to live in a personal care home, nursing home, or room somewhere because I do have my independence. I shop on-line, I get groceries delivered, I have some assistance for things I cannot do. I do get lonely at times. I'd love to talk with someone who understands living with health issues.

I'm really scared about permanently living without a hip.

Thanks for listening… If you have questions, I'll do my best to answer.

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I can relate to a lot of your issues. My friends can’t believe how well I am coping with all the stress, but attitude is everything for healing.
I’m very fortunate as my husband has been helping me immensely. One of my options is to have the hip removed completely like you.
Do you spend all of your time in a wheelchair? Can you put any weight on your hip less leg? Like transferring to the toilet or shower?
I feel I can live like I am currently if only they could stop the leaking. No one has any answers for me.

REPLY
@hiplessgranny

I signed up for this forum back in December 2018. I never heard anything back until I suppose I was moved to this forum. I have had six THR and twice severe sepsis. I've been through PICC lines, ruptured PICC lines, wound debridements, wound vacs, wound vac removal, swollen leg, lymphedema, wound surgical closure, closed wound infection, aspirations, no hip, Vancomycin spacer, Vancomycin IV for twelve weeks, Daptomycin IV for twelve weeks while hospitalized for the entire time, and more.

When I wrote in this forum I was at rock bottom with the whole process. Well life was quite limited but I kept pushing myself. I found a surgeon that thought outside the box regarding what could be done. He designed a femur, ball, socket and replaced the diseased femur and pelvic bone. I'm now eight months out from this surgery. My surgeon feels confident that with regular physical therapy and reduced weight I will be able to walk without a walker or cane. I'm challenged by the pain. It's relentless. I go to physical therapy and I find the pain unbearable but I keep trying to get the end result expected. I do home exercise daily just to move. I'm exhausted all the time.

I hate complaining to the surgeon because I know he's done his best. I was told what I have is all that can be done. So I suppose you're wondering why I'm writing… well I'm tired. I'm tired of doctors whom think all my problems will work out just by losing weight and continued physical therapy. I lost weight. No change. I'm physically unable to stand for long or sit for long. I've built up a smiling face mask for times I have to sit or stand beyond my tolerable limits. I actually prefer being alone so I don't have to hide my pain.

I'm not a candidate for more surgery. I have CHF and kidney failure now. I'm in stage three. I do get regular aspirations of the hip. I find that I lose feeling in my arms while using the Walker but I've found it happens even when I recline in bed. I have bone-on-bone in both knees. Also a torn meniscus in my left leg which is my "good" leg. When I workout or walk distance, I lose my breath due to my heart/kidney issues. It's tiring. Well actually exhausting.

I guess I have just learned to accept this situation because I find it difficult to hop on one leg and my surgeon thinks I should have this THR removed and not replace it. Hey I even started up a club with my walking friends. We call ourselves the "Mingos" short for flamingos. Yes flamingos stand on one leg but at times they do hop to relocate even though they have two legs. I try to keep humor in all of this. I am researching what my life would be if I do lose this "Hail Mary" hip replacement. I spent a year without a hip and it was difficult. I managed but it meant a total commitment to survive.

If anyone has specific recommendations on living without a hip, I would appreciate it. I live alone. As it is now, I have people assisting me with daily activities. I've found it financially rough and I am now retired. I do not want to live in a personal care home, nursing home, or room somewhere because I do have my independence. I shop on-line, I get groceries delivered, I have some assistance for things I cannot do. I do get lonely at times. I'd love to talk with someone who understands living with health issues.

I'm really scared about permanently living without a hip.

Thanks for listening… If you have questions, I'll do my best to answer.

Jump to this post

Yes have had many similar complications; including 3 separate incidents of infection – all were caused by different bacteria. There is not enough one stock on the left side so they did not put an implant there- this will be permanent- I’m actually getting by pretty well. About a 3 inch leg length difference so inside I wear 1 raised shoe and nothing on the other foot – balances pretty good but looks goofy! Lol. Only use wheelchair for longer distances otherwise use a walker. We have a tub chair but I no longer need the tub transfer. I can do a few stairs if there is a railing. Have adapted well and have no issues with this compared to having infection. I developed a sinus tract atone point and had a weeping wound for a year – home care was here daily to change dressings. Then once the implant was out and infection cleared up no more drainage. Have pain at night so take t3’s or long acting dilaudid. I call myself a one hip wonder!!!! Lol

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@koala78

Yes have had many similar complications; including 3 separate incidents of infection – all were caused by different bacteria. There is not enough one stock on the left side so they did not put an implant there- this will be permanent- I’m actually getting by pretty well. About a 3 inch leg length difference so inside I wear 1 raised shoe and nothing on the other foot – balances pretty good but looks goofy! Lol. Only use wheelchair for longer distances otherwise use a walker. We have a tub chair but I no longer need the tub transfer. I can do a few stairs if there is a railing. Have adapted well and have no issues with this compared to having infection. I developed a sinus tract atone point and had a weeping wound for a year – home care was here daily to change dressings. Then once the implant was out and infection cleared up no more drainage. Have pain at night so take t3’s or long acting dilaudid. I call myself a one hip wonder!!!! Lol

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Where I live there's a campaign to not order anything from the opioid list of drugs so there are only pain managed by Tylenol or Advil. Physical Therapy is ordered a lot for pain management. I manage pain as best as I can. I have mixed types of days.

I'm happy you have found your "one hip wonder" phase. I've found different adaptations for daily.. functions. Although I am exhausted most of the time. I'm sixty seven years young. I'm happy to wake up everyday. I guess all one can do is find their way through all the surgeries, wound care, and navigate the medical world especially when doctors at a prestigious organization as Mayo says this is all that can be done.

Thank you for your response. Take care.

REPLY
@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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Hello I’m nicole I’m 36 and have 3 kids 7, 6 and 10 years old. I had a hip repair which failed then a replacement that got infected bad I was septic, they took it out and I had a girdlestone procedure. That was in July 2018. I’ve been without a hip joint ever since..my surgeon won’t touch me again. I’m doing pretty good I suppose I workout every day I can walk fine without a cane but have the crazy limp.. I use a cane in public though… and have a lift in my shoe I bought on amazon..i know if I didn’t start working out like a maniac I wouldn’t be able to do these things. I can do squats and stairs are easy now I use an exercise bike daily… but it was definitely hard thinking I’m gonna be like this forever. I’m scared to have another replacement because of the risk of infection coming back. I’m so glad I’m not the only one!!

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