Share this:
Anonymous122054
@anonymous122054

Posts: 28
Joined: Nov 27, 2017

If you're living without a hip like me, please reach out to me.....

Posted by @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

Liked by lynzze

REPLY

I am not living without a hip but I read your message and just wanted to reach out to you. I suffer from chronic depression and pain from all kinds of spine conditions but I at least have both hips. Welcome to Mayo Clinic Connect.

Helen

@bernese53

I am not living without a hip but I read your message and just wanted to reach out to you. I suffer from chronic depression and pain from all kinds of spine conditions but I at least have both hips. Welcome to Mayo Clinic Connect.

Helen

Jump to this post

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

I hope on connect you will find some help. I need a new hip but my surgeon is afraid to as i had a TKR that went bad. Had it taken out put spacers in new one in which hot infected so now have fused leg. Some day I will have to have a THR when I can’t walk and stand the pain. My surgeon says I won’t be able to walk if I have a failed THR. Are you able to walk and get around. Thinking of you!

Hello @froggy1,

Thank you for taking the time to tell us your story as that must have taken some courage to share so much. We are happy to have you here.

I would like to invite @mrfish, @janelaine, and @lynzze to this conversation as well as they have all recently discussed antibiotic spacers and hip issues as well.

@froggy1, you may also want to check out the following discussion, https://connect.mayoclinic.org/discussion/what-kind-of-mobility-can-i-expect-with-an-antibiotic-spacer-in-my-hip/. Robin, if you don’t mind sharing, have you picked up any hobbies that don’t require movement to help keep your mind busy? I know when I was laid up after my knee replacement and ankle fusion I battled some depression from the isolation, inactivity, and boredom. I had to rely on my guitar playing, movies, and playing video games to keep my mind busy, but even those mindless activities can only take you so far. Chronic pain and mobility/joint issues can be isolating, so I am glad you found us here on Connect.

Hello, @froggy1, I am sorry that you had had to endure all of this but so happy that your rescue dog has been there for you. I am scheduled for a consultation about THR and your experience certainly makes me want to think twice and three times about it. I also had horses — we finally had to put them down yesterday because of problems with their advancing ages (in their 30s) and I had to be very careful around them. I urge you to read the posts in this group. There are several people living with severe conditions as well but finding a way to make the most of their lives. There is always hope. After you have had some time to recover, you may find that there are other doctors who have different approaches and new techniques that could change your future. Stay informed. I hope you can feel some connection to others through this forum and not feel so alone. You are in my thoughts and prayers.
Mamie

@lynettegable

I hope on connect you will find some help. I need a new hip but my surgeon is afraid to as i had a TKR that went bad. Had it taken out put spacers in new one in which hot infected so now have fused leg. Some day I will have to have a THR when I can’t walk and stand the pain. My surgeon says I won’t be able to walk if I have a failed THR. Are you able to walk and get around. Thinking of you!

Jump to this post

Hello Lynette. Thank you for contacting me. Amazingly I’m getting around really well. The first 4-5 months I fell- a lot! It was frustrating! Mostly tripping over little things or just being off balance due to my leg getting shorter while the femur pushes up into the pelvis and finds a place to settle. Hopefully sometime soon it will stop moving and there will eventually be enough scar tissue to provide some cushion and ease the pain. No one seems to know how long that will take.My housemate used to come home from work everyday and ask “did you fall today?” I wanted to have a shirt made that said “it’s been 2 days, 6 hours and 14 seconds since my last fall.” Sometimes I would fall and just lay there for a minute and start laughing, it’s better than crying sometimes and I need to entertain myself some how so why not? Since I had to learn to walk again 4 times I developed De quarveins(sp?} basically tendonitis of both hands. And that was due to using a walker and using my arms and hands to keep me upright to alleviate the pressure on my hip. It seemed to work at first but ended up being a bad decision which caused the pain starting in the thumbs and traveling all the way up to my elbows. It was so painful, I did PT for 8 weeks and had to wear braces on both hands I thought it would never end and when they started talking about surgery I really lost it. I’m scared to death of any surgery now. The pain is almost gone and when I use the walker or cane I’m sure to ease up on my hands and wrists. I had a special shoe made where they added about 2 inches to the bottom of my left shoe to try to get me “even” as I walk. I walk around barefoot in the house with my cane but I have a terrible limp, that really throws off my gait and then my back and shoulder starts hurting. I wear the “special shoes” when I go out in public so my limp isn’t as obvious. I have nice boots and other nice shoes that I don’t know if I can ever wear again. My ins. co. will only pay for 1 pair of lifted shoes a year. It would cost $100 per pair of shoes to lift them all. I don’t think I’ll ever get used to having to use an electric cart when I go to Target or the grocery store. People look at me like “what is she in that cart for?” Like I’m doing it for fun, weeeeeeeeeeee. I’m living one day at a time, sometimes one minute at a time. It’s hard trying to see a future. My life is exhausting. I have to think about every step I take, where I can sit and for how long and long drives are difficult. I can’t even walk my dog. I need an income and have no idea what to do. I think the worst part is no one seems to know what to tell me, everyday is different and probably will be forever. Sorry for rambling. I hope you were able to get anything helpful from this response. Thanks, Robin

@lynettegable

I hope on connect you will find some help. I need a new hip but my surgeon is afraid to as i had a TKR that went bad. Had it taken out put spacers in new one in which hot infected so now have fused leg. Some day I will have to have a THR when I can’t walk and stand the pain. My surgeon says I won’t be able to walk if I have a failed THR. Are you able to walk and get around. Thinking of you!

Jump to this post

My leg with bad hip is fused and is 3 inches shorter now. I have a 1 inch lift on that shoe. I also paid $100 for lift but now have found an awesome shoe repair shop that only charges $30. You might check to see if there is a shoe repair by you that might do it cheaper

Welcome to the discussion Robin, @froggy1 This been a very valuable forum for me since I discovered it a few months ago, not only for thehelpful advice from others that have undergone the same/similar procedures but also just by being able to connect with others who have gone through physically and mentally challenging healthcare issues.

I had an antibiotic spacer put in about 2 weeks ago due to an infected THR (the THR was done in Dec 2016), and I’ve been back at home for aboiut 5 days now with great support from my wife and teenage sons. While I haven’t had to go without a hip at all, there are others on here who have, hopefully @lynzze will join the discussion, she’s been through THR’s, spacers and periods with no hip joint at all and she was a great help to me to better understand what I was heading into ahead of my surgery to place the spacer.

I’m an otherwise healthy 48yo male. While my infection wasn’t nearly as acute as yours, I greatly underestimated how much more difficult and painful things were going to be with the spacer and according to my medical team, the surgery went very well, as planned and everything is in in place where it is supposed to be. It sounds like your new orthopedic surgeon is a better fit for you, I hope you can have an honest discussion with him/her and/or your regular health care provider about your problems with your first ortho, your current frustrations and possible depression given your difficult situation.

Are you active in any other online discussion forums related to any of your hobbies or interests? Those can be a great way to pass the time and make connections when getting out is difficult and limited. Fishing and the outdoors are my main interests, and there’s a vast set of discussion forums and subforums that I regularly participate in (much more so recently) at the “Alaska Outdoors Supersite” http://forums.outdoorsdirectory.com/forum.php While that may not be your cup of tea, it’s an idea of what’s out there.

I wish you all the best through these challenging times.
Art in Alaska.

@mrfish

Welcome to the discussion Robin, @froggy1 This been a very valuable forum for me since I discovered it a few months ago, not only for thehelpful advice from others that have undergone the same/similar procedures but also just by being able to connect with others who have gone through physically and mentally challenging healthcare issues.

I had an antibiotic spacer put in about 2 weeks ago due to an infected THR (the THR was done in Dec 2016), and I’ve been back at home for aboiut 5 days now with great support from my wife and teenage sons. While I haven’t had to go without a hip at all, there are others on here who have, hopefully @lynzze will join the discussion, she’s been through THR’s, spacers and periods with no hip joint at all and she was a great help to me to better understand what I was heading into ahead of my surgery to place the spacer.

I’m an otherwise healthy 48yo male. While my infection wasn’t nearly as acute as yours, I greatly underestimated how much more difficult and painful things were going to be with the spacer and according to my medical team, the surgery went very well, as planned and everything is in in place where it is supposed to be. It sounds like your new orthopedic surgeon is a better fit for you, I hope you can have an honest discussion with him/her and/or your regular health care provider about your problems with your first ortho, your current frustrations and possible depression given your difficult situation.

Are you active in any other online discussion forums related to any of your hobbies or interests? Those can be a great way to pass the time and make connections when getting out is difficult and limited. Fishing and the outdoors are my main interests, and there’s a vast set of discussion forums and subforums that I regularly participate in (much more so recently) at the “Alaska Outdoors Supersite” http://forums.outdoorsdirectory.com/forum.php While that may not be your cup of tea, it’s an idea of what’s out there.

I wish you all the best through these challenging times.
Art in Alaska.

Jump to this post

So are you having a 2 stage? And the spacer was the first stage? After my last hip was removed I was offered an “attempt” at a 2 stage.which would have involved placing a space along with another PICC line for 7 more weeks of IVs and if that went well a second surgery “attempt” to get something in my femur and another 7 weeks of IV antibiotics. and no guarantee that I wouldn’t get another staph infection or that the new hip would even work right. Plus I had breast cancer surgery and they wanted me to do radiation while all this other stuff with staph infections and IV fluids for 3 1/2 months was going on. I said no way to radiation, my body can’t handle any more crap running through it. And I decided that at least with no hip I know what I’m dealing with so no more hip procedures either.. I’m still trying to deal with that fact that I’ll be crippled for the rest of my life. I have no family I speak to and know no one in the city I’m living in. I’m trying to get back to Seattle (50 miles away) and be able to afford a room there or a trade as a live in caregiver. My life has taken a huge beating this past year and I’m still trying to figure it all out. What to do with myself? This is the only online discussion I’ve ever been on. I’m not very swift on the computer but need to keep reaching out to others before I go crazy.Thanks for contacting me. Keep me posted on what you’re going to do. Good night, Robin

Liked by jo54

@froggy1 , Good morning Robin…yes, the spacer I have right now is the first of a 2-stage/2-surgery process. I self-administer vancomycin IV’s twice a day via a PICC line — in fact I’m hooked up to one right now and watching the People’s Court 🙂

I was told I would probably have the spacer and be doing the IV antibiotics for 2 to 3 months before the second stage/surgery when I’ll get a new THR. I’m not totally sure what leads them to conclude the infection is clear, but I assume it’s looking at results from weekly blood testing. @lynzze has had multiple infections/re-infections and I think she was trying to encourage me to have them keep the antibiotic spacer in there as long as possible to maximize likelihood that the infection is cleared.

It sounds like they’re suggesting something more than a 2-stage process for you? Like 3 or more? Phew, I can understand your frustrations, especially with your breast cancer diganosis and treatment all around the same time.

I have a friend who had hip replacement many years ago that had begun to fail and as part of his treatment he had to undergo a period with no hip at all — I think to allow his femur and pelvis some healing time in order to be ready to accept a new THR implant. He’s not on this forum (that I’m aware of), but I’ll send him an email and see if he’ll join the discussions and bring in his perspective and experience (and he also happens to live in Seattle).
Best, Art.

They measure the amount of inflammation in your body by taking your blood weekly and checking those levels to determine if the staph is gone. Normal is between 0-20. Although it’s not an exact science. When I was in the hospital it was 119. After 4 weeks I was down to 43 but it stayed at 43 for 2 more weeks. My infectious diseases Dr. said some people never get down to 20 or below. Since it stayed the same for 3 weeks he pulled the PICC line. Surprise,surprise! Staph wasn’t gone and 6 days later I was rushed to the ER septic and close to death (what they told me). They pulled out the whole thing and then all the we can “attempt this and attempt that” started flying around. I said no way. I’m done. Too much too handle. I’m a little surprised by some stories on here though. People who have had numerous surgeries and numerous infections who have been told that they need to wait a year or more before they can get another hip. I was told by my new surgeon that if I was going to get a new hip it would have had to be within a few weeks after the infection was gone. He says even if I wanted to go ahead with a new one now they couldn’t do it because I’ve been walking around with no joint for 7 months and during that time the femur has been pushing it’s way up into the pelvis trying to find a place to settle. So putting in a new joint would involve trying to lengthen the leg. According to him that’s not easy and sounds like something he can’t do. Now, the MAYO clinic is a whole different ballgame so maybe that’s easy for them. Either way, I’m not interested in any more surgeries. In fact I’m so scared of Staph that I don’t think I’ll ever have another surgery for anything. That’s how exhausting and depressing it was to do 14 weeks of IV’s. I’m glad you have family there for you, It probably makes it easier for you to deal with. I didn’t have that and even though I had people shopping, driving and visiting me, It was all me every 8 hours and it was lonely and hard. It would be great if I could be in contact with your friend in Seattle. Have a good day. Robin

@JustinMcClanahan

Hello @froggy1,

Thank you for taking the time to tell us your story as that must have taken some courage to share so much. We are happy to have you here.

I would like to invite @mrfish, @janelaine, and @lynzze to this conversation as well as they have all recently discussed antibiotic spacers and hip issues as well.

@froggy1, you may also want to check out the following discussion, https://connect.mayoclinic.org/discussion/what-kind-of-mobility-can-i-expect-with-an-antibiotic-spacer-in-my-hip/. Robin, if you don’t mind sharing, have you picked up any hobbies that don’t require movement to help keep your mind busy? I know when I was laid up after my knee replacement and ankle fusion I battled some depression from the isolation, inactivity, and boredom. I had to rely on my guitar playing, movies, and playing video games to keep my mind busy, but even those mindless activities can only take you so far. Chronic pain and mobility/joint issues can be isolating, so I am glad you found us here on Connect.

Jump to this post

Thanks Justin. My problem is that I have been dealing with depression and anxiety for 40 years so it’s not surprising that it got so much worse after this.I developed PTSD about 7 years after an incident that I’d rather not discuss. I’ve been debating writing to Dr. Phil for a long time. He seems to have connections with everyone. He works with these dual diagnostic centers that deal with the whole person physically. emotionally and psychologically. I’m thinking that he would be my best shot at getting my life together. But I have so many issues I wouldn’t even know where to start if I wrote to him. I keep hoping one of my friends will write to him about me. I’ve brought it up but no one thinks I’m serious, I guess. I’m very serious! I started making jewelry again but I’m not very fond of or good at selling it. I don’t want to do etsy, craigslist or e-bay because setting up a web page and paypal and all that involves, I have no idea or interest in doing all that. I’ve looked around at local farmers markets too but it’s usually about $50 for a table and literally every other booth is selling jewelry. I need more than a hobby, I need a job. One where not having a hip won’t be an issue. Because I’m not doing any more surgeries. None, ever never ever. That’s what I’m trying to deal with. Sorry for being a downer but if I can’t be honest there’s no point in participating. Thanks, Robin

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

Liked by 194719731977

@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

Jump to this post

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

Hello Heather. I’m so sorry to hear about your hip and your fall and shattering your pelvis. I can’t even imagine the pain you must be feeling. I hope you are working with physical therapy and a home health aide. I was falling a lot when I first got home from the THR removal. I’m pretty steady now but I do use a cane in the house and a walker or electric cart when I go to the market or lunch etc. I tripped getting into the shower last week, it’s a single shower stall and I have a grip bar that I usually grab onto when stepping up and in. Well, I hit all my toes on my good leg stepping in and down I went winding up on all fours and feeling a sharp pain in my groin. Thank God I didn’t pull a muscle but, the following week I was very sore. I still have to take pain meds daily (usually just once, sometimes twice). It sounds like you need to be working on building up the strength in your arms and legs and I can assure you that doing it in bed is very easy. Your therapist should be able to put a program together for you that you can work on several times a day. Do you have help at home? Husband?Roommate? If so, that’s great. I’m not married, have no kids or roommates and that was really tough for me. Having to go through 4 surgeries with no daily help. I did have a therapist every other day and friends who would stop by and do laundry or clean a few times a week. I think mentally I was falling apart mostly because I couldn’t believe all that was happening to me and how my life would be so different from then on.It’s been almost a year now since the final removal of my hip and I feel i’m doing really well. Hang in there. If you’d like to talk, send me a private message and we can exchange phone numbers Robin

Please login or register to post a reply.