What kind of mobility can I expect with an antibiotic spacer in my hip

Posted by mrfish @mrfish, Nov 3, 2017

About 11 months ago, I had a total (right) hip replacement. No injuries led me to the decision to undergo that, just arthritic pain that had become gradually worse over 20+ years. Several months after the surgery, I developed an infection at the joint but it took a while to get that properly diagnosed. So, in less than two weeks I’ll undergo the first of the two surgeries/stages to elminate the infection and replace the implant. I’ve read that the antibiotic spacer I’ll have for 2-3 months will provide “limited mobility” but I’m struggling with what that really means. I’d apperciate any further information I can get from others who have undergone this same procedure. I expect 2-3 days of hospitalization following the surgery and IV antibiotic infusions several times a day (self-administered).

I’m an (otherwise) healthy 48yo male and I was very happy with how quickly I was able to bounce back from the original hip replacment. I’m sure there will be a week or so of recovery from the surgery itself — but after that am I going to be mostly home-bound for the interim, or is driving myself and working in an office setting (on a limited schedule) a possibility? What other aspects are there to living for a with a hip spacer?

Thank you in advance for your help on this,
Art in Alaska.

Liked by lynzze

Praying for you

REPLY
@jsacco

I’m about 25 days out before getting my hip spacer remover. It was implanted July 11 and I will be completing 6 weeks of iv antibiotics this week. I’m hopeful to be back to walking soon.

Jump to this post

Good news. Sending every good wish your way. Do you have a new hip? Are you not walking now? I was allowed 50% weight bearing for first 6 weeks. I know every consultant has their own way of doing things just wondered. Onwards and upwards from here on in work hard at the physio you will get there.

REPLY

Warning: this is going to be LONG!
I hope I'm not too late to join the discussion but my experience varies greatly from the majority and maybe you guys might be able to help me figure out why!
I sat down in 12/17 and cldnt get bk up. I crawled around the house for a week hoping it would fix itself. During this wk I felt no pain…I guess it was bc i was an iv drug user :-\ please don't judge me too harshly! It was bc I've lived w chronic severe pain from endometriosis for 15yrs now and was prescribed into it bc opiates were the only things that helped me live a quasi normal life, then I got cut off, bought them on the st until that feel through then I came upon an iv drug just as I ws ready to end it all. I thought it was a sign! Imagine my frustration when I woke up, addicted after the first shot bc of the total mental and physical pain relief!
Anyways! I threw up a blood clot the size of my fist and that's what convinced me to stop putting it off and go to the ER! They were so concerned I was immediately put on a surgery like table. They thought i had a spinal abscess or something but it turns out I had "just" gone septic with mrsa. I'm not sure when it occurred but my infection turned into septic arthritis and osteomyelitis which effected my right hip the most and caused a fracture. For four months I was given iv vancomycin. I developed a bed sore on my sacrum and between that and my hip, the pain was only describable as hellfire, so I did nothing but cling to the bedrail and scream and cry and waste away. Of course, nothing they cld give me cld touch my opiate tolerance but Thank god what they gave me did keep the withdrawal away! That w/d is 100× worse than pill w/d! I'm so disgusted w myself! I did kno better but I wanted my suffering to be OVER!
After these 4mos, they declared me clear of mrsa and able to go to a rehab for PT! Well, I ws only there for two excruciating mos before I was rushed bk to the hosp and on the emergency surgery table 7/2/18 to debride and drain out 2L of pus! They left a drain in and seemingly as soon as they took it out, my left hip dislocated with zero provocation! I hadn't stood or transferred or ANYthing for those 7months since my crisis started. Surgery to correct that mid July.
FINALLY! Mid August (18) my ortho agreed to put in an antibiotic spacer. Well it fight go smoothly bc my femural head crumbled first then my dr decided to "manipulate (my) knee and ankle for ROM purposes and brutally fractured them both. Well due to the trauma, shock, infection or extended anesthesia, I died while on the table! I woke up 6 days later from a medically-induced coma with a tube down my throat and medical oven mitts on my hands.
Since then recovery has been hell. So has pain management, due to my extensive opiate tolerance I was literally nothing but a ball of pain I did not exist outside that pain. I have tried to do pt several times and have never been able to bear weight on my right leg. I had no idea it could be this bad. All together I was in the hospital for 22 months and now I am in a nursing home where I've been for the past 45 days. I did not know that when you came to a nursing home that it was even possible for the doctor to cut your pain meds without even seeing you unless you lie in bed for 8 days in misery, not moving, not eating and urinating on myself for the first time in a year. Coming here has really been hell although it is better than the inner city nursing home. I did look into the nursing home rules and regulations and they are required to give you the tools necessary to progress and not regress so what I did was call my insurance and they suggested that I file a formal complaint with the nursing home . And if that didn't get me anywhere I should file a report with the health department . That day I saw a nurse practitioner who agreed to give me back half of my oxycodone I had previously been on 8mg Dilaudid every 8 hours and 20 mg oxycodone every 4 hours but she wrote me Oxycodone 10 mg every 6 hours . it made things a little better but I am spinning my wheels doing things that I had done six months ago in the hospital. Now I'm learning they had set unattainable goals for me in PT! I was just told Friday that I am not meeting the goals required for my insurance to pay for me to be in the rehab unit! They expect me to be able to stand or walk and so far I have only been able to pull myself up on a walker with my upper arm strength and have a death grip on the Walkers hand grips. even shuffling backwards, dragging my right leg back to the chair to sit down is so excruciatingly painful I can't describe it. I don't understand why I'm still in so much goddamn pain! I don't understand why they're putting me out to pasture after setting unreasonable goals and not giving me the tools that I need in order to attempt to achieve them after only 45 days when there are people here that don't even go to PT. I know every insurance is different but this seems a little harsh. so what I'm going to do tomorrow is tell the nurse that I'd like to file a formal complaint and then if that doesn't work I'm going to go to the health department because I am too young for them to force me into a long-term bad because they are slacking. I do definitely not want to be a cripple in a wheelchair and laying horizontal for the rest of my life I used to be pretty I'm only 35 What Hurts the Most is the last few months in the hospital I've believed that I could have some sort of life back I tried to do my makeup get dressed by myself I actually achieved putting on my own socks and shoes! and this doctor that I didn't even know took that away from me with one swipe of a pen one stroke of a keyboard. Please excuse any punctuation marks I got tired of typing and did talk to text I've been looking for help or advice or acknowledgement from someone who has been through this for so long I'm so glad that I found you guys if if anyone could reach out to me it would mean more than you know I've been going through this all alone for so long, losing everything and I mean everything along with my mind but of course they took my Xanax away from me too when I came here

REPLY

I should also mention that during a full body skin they noticed that my bones are so weak that they are equivalent to those of a 95 y /o woman and that there is absolutely no plan for me to get a thr in the future due to the fact that I died on the table. My Ortho said to contact him if I feel like my antibiotic spacer or my femur crumbled but that's it . I did however have a debridement of my second bed sore and upon swabbing the wound, they found MRSA. That was just before I came here to the nursing home. After a month here, they did a swab and they said that I was clear of MRSA with only using vashe, no other antibiotics!

REPLY
@tooyoung

I should also mention that during a full body skin they noticed that my bones are so weak that they are equivalent to those of a 95 y /o woman and that there is absolutely no plan for me to get a thr in the future due to the fact that I died on the table. My Ortho said to contact him if I feel like my antibiotic spacer or my femur crumbled but that's it . I did however have a debridement of my second bed sore and upon swabbing the wound, they found MRSA. That was just before I came here to the nursing home. After a month here, they did a swab and they said that I was clear of MRSA with only using vashe, no other antibiotics!

Jump to this post

@tooyoung – first I want to welcome you to the Connect community. I'm glad you found Connect! It sounds as if you have had a horrendous battle that encompasses so much more than just the issues usually associated with joint replacements. My heart goes out to you and I'm hoping that the path gets easier as you move forward. I'm wondering if you have had time to explore some of the other Connect groups here? I would definitely suggest that you take a look at the Chronic Pain group. You might also look into the group for Anxiety & Depression. Do you think one of these groups could offer you more help in your current situation? I'm wondering what kind of feedback and discussion you think would offer you the most useful?

REPLY
@debbraw

@tooyoung – first I want to welcome you to the Connect community. I'm glad you found Connect! It sounds as if you have had a horrendous battle that encompasses so much more than just the issues usually associated with joint replacements. My heart goes out to you and I'm hoping that the path gets easier as you move forward. I'm wondering if you have had time to explore some of the other Connect groups here? I would definitely suggest that you take a look at the Chronic Pain group. You might also look into the group for Anxiety & Depression. Do you think one of these groups could offer you more help in your current situation? I'm wondering what kind of feedback and discussion you think would offer you the most useful?

Jump to this post

Thank you for your quick response and the concern you've shown!
What I hoped to find here was that I am not alone but it seems like my experience is esoteric… Not that any of us can ever fully understand what the next user is going through, I hoped that soomeone might be able to give me an idea of WHY mine is so problematic/painful and perhaps give me advice going forward!
I do have a ludicrous amount of anxiety/depression, but I feel like it comes directly from this pain and its consequent life changes and limitations.
And as far as the chronic pain group, it's hard for me to accept that so many people have thr's and have minimal pain afterwards and feeling like I will have chronic, lifelong, excruciating pain bc my docs won't do a thr!
I apologize, it seems I'm as lost and misguided here as I am in all of life! I'm just so tired of falling between the cracks!
Again. I'm sorry! If you'd like me to take down my story, I understand…

REPLY
@tooyoung

Thank you for your quick response and the concern you've shown!
What I hoped to find here was that I am not alone but it seems like my experience is esoteric… Not that any of us can ever fully understand what the next user is going through, I hoped that soomeone might be able to give me an idea of WHY mine is so problematic/painful and perhaps give me advice going forward!
I do have a ludicrous amount of anxiety/depression, but I feel like it comes directly from this pain and its consequent life changes and limitations.
And as far as the chronic pain group, it's hard for me to accept that so many people have thr's and have minimal pain afterwards and feeling like I will have chronic, lifelong, excruciating pain bc my docs won't do a thr!
I apologize, it seems I'm as lost and misguided here as I am in all of life! I'm just so tired of falling between the cracks!
Again. I'm sorry! If you'd like me to take down my story, I understand…

Jump to this post

You said you "have a ludicrous amount of anxiety/depression". My observations during the 20+ years I have had PN, is that mood is very responsible for increases in pain levels. From frustration (for any reason) to stress, and any other types of mood, can all increase pain levels dramatically. There have been times when I had reduced levels of stress and had reduced levels of pain as well. When the stress comes back, the pain comes back. You also said " I'm as lost and misguided here " indicates you need to find some help in managing your life in general. Also, please don't apologize when telling your story and don't feel you need to take your story down; your experiences are as important as anyone else's here and we want to hear about your experiences so we can try to help you. We are here to help you deal with your PN by providing insight into our combined experiences in how we all deal with this disease on a daily basis. Regarding the THR you would like. I am sorry, but I don't know what a THR is, but if you feel it will help you control your pain and PN, find a different Dr. There are a huge number of medical professionals out there and each one has a different way of treating each problem they try to help patients deal with. If needed, go to a different Doc, try a specialist such as a Anesthesiologist. Also find a doc to talk to about your Anxiety/depression and your feeling of feeling lost and misguided. Your nervous system is complex and a part of every part of your body. Finally, some people have found help in their church. Letting God into your life can have dramatic results for some people. Please maintain participation in this group (or another like it if you prefer) but don't bottle everything up and please know we're all in this together and will help you as much as possible. Keep us informed about your status.

REPLY
@tooyoung

Thank you for your quick response and the concern you've shown!
What I hoped to find here was that I am not alone but it seems like my experience is esoteric… Not that any of us can ever fully understand what the next user is going through, I hoped that soomeone might be able to give me an idea of WHY mine is so problematic/painful and perhaps give me advice going forward!
I do have a ludicrous amount of anxiety/depression, but I feel like it comes directly from this pain and its consequent life changes and limitations.
And as far as the chronic pain group, it's hard for me to accept that so many people have thr's and have minimal pain afterwards and feeling like I will have chronic, lifelong, excruciating pain bc my docs won't do a thr!
I apologize, it seems I'm as lost and misguided here as I am in all of life! I'm just so tired of falling between the cracks!
Again. I'm sorry! If you'd like me to take down my story, I understand…

Jump to this post

@tooyoung, right after I got my spacer the pain was excruciating, like nothing I'd ever experienced before. Unfortunately, it took my ortho a few days to realize just how bad it was for me, but fortunately he brought in an anesthesiologist who put in a pain block (sorry, I'm not sure if that's the correct term). It was a small tube that gradually released a local anesthetic at/near a my spine which gave me immediate relief (so I was also tethered to the IV bag and its pump). I think I had that for about three weeks. I still had moderate pain from the spacer after that was removed, but it was nothing like what I experienced at first. I don't know if maybe a nerve was damaged in the surgery to put in the spacer, or what, but it helped get me "over the hump". Good luck, I hope you can address your pain and eventually get the spacer out and a new THR.

REPLY
@tooyoung

Thank you for your quick response and the concern you've shown!
What I hoped to find here was that I am not alone but it seems like my experience is esoteric… Not that any of us can ever fully understand what the next user is going through, I hoped that soomeone might be able to give me an idea of WHY mine is so problematic/painful and perhaps give me advice going forward!
I do have a ludicrous amount of anxiety/depression, but I feel like it comes directly from this pain and its consequent life changes and limitations.
And as far as the chronic pain group, it's hard for me to accept that so many people have thr's and have minimal pain afterwards and feeling like I will have chronic, lifelong, excruciating pain bc my docs won't do a thr!
I apologize, it seems I'm as lost and misguided here as I am in all of life! I'm just so tired of falling between the cracks!
Again. I'm sorry! If you'd like me to take down my story, I understand…

Jump to this post

Although there are many doctors and ways to attempt dealing with the variety of chronic pain conditions mentioned on this forum; I have occasionally found it helpful to reach out to a therapist to focus on ways to process my emotions associated with living with chronic illness……at those times, I feel like there is a weight temporarily lifted…and then I leave therapy for years and am able to manage, advocate for medical services in way too many ways to start to even describe, and continue to rely on strategies to promote calmness in my life, along with being able to sustain some minimal relationships and even a little fun! Then, the cycle seems to start again…..but we all seem to have a human condition and feeling grateful for what I do have seems to go a long way in going through each day…however they unfold…..

REPLY
@lturn9

You said you "have a ludicrous amount of anxiety/depression". My observations during the 20+ years I have had PN, is that mood is very responsible for increases in pain levels. From frustration (for any reason) to stress, and any other types of mood, can all increase pain levels dramatically. There have been times when I had reduced levels of stress and had reduced levels of pain as well. When the stress comes back, the pain comes back. You also said " I'm as lost and misguided here " indicates you need to find some help in managing your life in general. Also, please don't apologize when telling your story and don't feel you need to take your story down; your experiences are as important as anyone else's here and we want to hear about your experiences so we can try to help you. We are here to help you deal with your PN by providing insight into our combined experiences in how we all deal with this disease on a daily basis. Regarding the THR you would like. I am sorry, but I don't know what a THR is, but if you feel it will help you control your pain and PN, find a different Dr. There are a huge number of medical professionals out there and each one has a different way of treating each problem they try to help patients deal with. If needed, go to a different Doc, try a specialist such as a Anesthesiologist. Also find a doc to talk to about your Anxiety/depression and your feeling of feeling lost and misguided. Your nervous system is complex and a part of every part of your body. Finally, some people have found help in their church. Letting God into your life can have dramatic results for some people. Please maintain participation in this group (or another like it if you prefer) but don't bottle everything up and please know we're all in this together and will help you as much as possible. Keep us informed about your status.

Jump to this post

Omg thank you for your extraordinary kindness! My PT was jst talking to me about the effects my negativity could be having on my pain and to be honest, I don't know anymore! It's been 15 yrs-my entire adult life (first the 80+ terrifying ER visits before endometriosis diagnosis then 40+ post-diagnosis). I'm starting to feel like my whole life is a shit show lol
I DO apologize for my incessant apologies, it's jst that my entire life it's been drilled into my head I'm nothing but a "burden, a disappointment and a failure" so whenever anyone even suggests I'm doing something wrong, is second nature for me to accept defeat and shut down…yet another problem I'm aware of but if it keeps being proven, how do I change my way of thinking?
For example, even though my surgery was mid 8/18, I just came to a nursing home in that beginning of Sept (meds, suicide watch, previous experience w a nursing home was very negative, my severe pain and the level of care are all reasons they gave me for it taking so long)! They didn't get my pain under control until my 16th mo in the hosp! Before then I'd just cling to the bedrail and cry and moan, I gave up on ever having a life! But after, my pain was at a tolerable lvl and I progressed like lightning! I was still depressed (who wldnt be after all that time in a hosp, losing everything w no friends or familial support?) But I'd begun to believe I cld have at least part of my normal life back! I was even proud of myself some days! But when I got here, they cut my pain meds in half AND cut my anxiety med completely! Without even seeing the Dr! I stayed in bed 8days, not eating, screaming bloody murder every time I moved, it was horrific! So they effectively took all my progress (mental and physical) and washed it away w one swipe of a pen (/stroke on a keyboard)! I saw the Dr during that time, he sd I'd "get used to it" and left me! Then, finally on that 8th day I saw a nurse practitioner who agreed to give me half of the meds they took and space it out two more hrs Bc I told her I read the nursing home rules and regulations and they're not supposed to halt your progress, much less cause regression and my plan was to report them to the health dept for noncompliance on the advice of my health ins rep!
So! I've been spinning my wheels, doing things I was doing 6 mos ago at the hospital, struggling to make a bit of progress, when ask of a sudden, they told me last Fri that if I didn't make some huge improvement Monday that they were going to cut me from the rehab program and move me to a long term bed! After only 45 days here, with the improper tools (it'd be ok with me if they DIDN'T give me my meds bk, but manage my damn pain SOMEHOW)! But instead the Dr comes in for 30secs when I've just fallen asleep and tells me I'll "get used to it?!" How can they punish me for me not being able to stand the torture enough to progress with the absolute minimal tools?! It's like telling Monet to create a masterpiece with a box of 8 store brand crayons that've been used, broken and are barely functional! I WISH. I cld drag my leg without such intense pain! I'm 35 fit Christ's sakes, its not like i Want to be crippled forever!
And a THR is a total hip replacement! I understand there are many more ortho surgeons out there but dealing with finding a Dr has been overwhelming as heck to me since my health probs started! I know it's something I'm going to have to do if I ever get out of here though so I'm trying to work up nerve! I only hope that that cycle is finally broken and I find one dr who doesn't treat me like I'm an annoyance to them…
I know I'm too emotional y'all… I can't help it! I used to be better at hiding it but now I'm physically crippled so I might as well show my emotional crippling too!
I DO sincerely appreciate ANY feedback, advice, anything but tough love lol and if you suggest something and I say "I tried that but…" Please don't think I'm discounting your advice, I'm just telling you MY experience in hopes that maybe you can help me work around…my fear/experience…? Make sense?

REPLY
@mrfish

@tooyoung, right after I got my spacer the pain was excruciating, like nothing I'd ever experienced before. Unfortunately, it took my ortho a few days to realize just how bad it was for me, but fortunately he brought in an anesthesiologist who put in a pain block (sorry, I'm not sure if that's the correct term). It was a small tube that gradually released a local anesthetic at/near a my spine which gave me immediate relief (so I was also tethered to the IV bag and its pump). I think I had that for about three weeks. I still had moderate pain from the spacer after that was removed, but it was nothing like what I experienced at first. I don't know if maybe a nerve was damaged in the surgery to put in the spacer, or what, but it helped get me "over the hump". Good luck, I hope you can address your pain and eventually get the spacer out and a new THR.

Jump to this post

thank you for sharing your experience and your support!
I'm not sure if my ortho was a butcher or what but my femural head crumbled when he took it out of socket. Maybe his roughness is what's causing so much residual pain for me? Either that or the septic arthritis/the fact they allowed the mrsa to damage that area for 9 mos before spacer placement…? I died on the table and wasn't woken up for six days afterwards but it sounds like a nerve (I thinthat's the right terminology for it)/pain block wldve been a godsend! For me the pain has only lessened for an off the charts to a ten usually only upon movement, moments of little or no support, when sitting on a hard surface or when my leg is held too high after a few months! They say long term opiate use can change the way your body feels pain too, so it's a catch 22! It really is! I don't feel like I deserve to suffer anymore… Its to the point where my chest hurts bad every day before pt bc I'm jst so certain that TODAY is going to be the day where I feel just one more iota of pain than usual and I'm going to go totally irreparably insane! Again, not normal, but what I'm learning about experience w spacers is that no two are the same, and just like w my endometriosis, the lvl of pain is impossible to measure, which sucks! I was recently denied for disability and its like "who's kept in the hospital for 22mos if they're not disabled?!" All bc they can't just put a stamp on me and say "ok, she has a antibiotic spacer, stress disabled," but in the meantime, I'm in this damn nursing home rotting away, losing more and more of myself everyday… What's a girl to do?!

REPLY
Please login or register to post a reply.