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.

Interested in more discussions like this? Go to the Joint Replacements Support Group.

@mrfish

Okay, here's another update. It's a bit after the fact, bear with me.

So, to recap, on Feb 14 I finally got the antibiotic spacer removed after living with it for 3 months and functional hip hardware re-implanted Things were going great…I was back in physical therapy and regaining strength and mobility quickly. That’s about where we left off last time.

The dressing over the incision was hooked up to a small wound vac that I was supposed to wear for one week after being released from the hospital. Almost nothing drained from the incision into the wound vac until the day before it was supposed to come off. Then a bunch of “old” blood drained out and nearly filled the vac’s reservoir overnight. I called my ortho and they got me in right away…the drainage had stopped by then and he figured it was just a clot that had liquefied and drained. He considered putting another wound vac on with a new dressing, which I wasn’t very happy about. I was trying to get back to work and that’s not very easy if you have to drag around a bunch of post-surgical devices with their associated tubes and hoses (and this was also on a Friday afternoon and getting insurance approvals for another device wasn’t happening quickly on a Friday afternoon). Since the drainage had stopped, they re-dressed it with a bunch of gauze and tegaderm and I was to let them know if any drainage resumed.

Things went well thru the weekend until the following Tuesday (3/27) when, after a morning PT session, a bunch of new drainage occurred. Not blood this time, but a tannish fluid…and a quite a it of it, the gauze became saturated. I called and then texted a picture of the gauze to my ortho’s PA. They called me back right away, asked when I last ate anything and wanted me to come in for a “wash-out” surgery in 3 hours. Calling that a shock doesn’t really describe it…I guess the drainages I’d had were a clear sign something wasn’t right, but it’s hard to mentally prepare yourself for surgery and all that entails on such short notice.

So, I go in and do the wash-out that day and was put on IV antibiotics. I expected to stay in the hospital for another 2-3 days after surgery while they fine-tuned the antibiotics dosage. Two days later, my ortho tells me a culture they took during the wash-out was growing something but it probably would take another day until it grew enough for them to identify it. Throughout all the previous tests and cultures, they had never been able to successfully culture anything from my hip, so it was kind of a positive that they might finally know what, specifically, had been causing me all these problems.
The next evening, the ortho and my infectious disease specialist come into my hospital room to let me know the culture produced staph (not mrsa) and they were recommending yet another surgery. He said the chances success from the wash-out surgery I had just gone through and antibiotics was somewhere around 50-60%...if I agreed to one more surgery to swap out the hardware and continued antibiotics, we were told the chances of success went up to nearly 90%. I was really weary of another surgery (one week exactly after the wash-out), but the increased chances for success were pretty striking, so with my wife we decided to follow their recommendation. This was going be the 5th overall surgery on my right hip, and it would be surgery #4 since just last November, and a 3rd surgery in the span of just under 3 weeks. They made me stay in the hospital thru the weekend until the next surgery. That was a tough time; there was a lot of frustration, anger and tears.

Tomorrow marks 2 weeks since the most recent surgery (which was on 3/6). I’ve got a PICC line (again), giving myself cefazolin infusions three times a day, and taking rifampin capsules twice a day.

I’ve re-started PT once again, and I went back at work last week (6 days after surgery). It’s frustrating to have put in so much work to regain mobility just to have more surgeries kick me back down again. No more surgeries scheduled as of now; just waiting to see how this course of antibiotics goes. I need to talk with my infectious disease specialist again because I want to better understand his plans…what is he looking for in my weekly bloodwork? When does he anticipate discontinuing the antibiotics? What’s the plan after ending the antibiotics--hopefully not just “wait and see". What more can they/we do to make surer this treatment actually works?

Jump to this post

Oh my - you are having a tough time getting that infection under control. Going through more surger(ies) was definitely not in the plan. I can understand the frustration, anger and tears.

My THR is scheduled for April 10. The lab work shows the the fungus infection is gone but nothing is certain until the culture is done while I'm on the operating table. My ortho doc said if there was still an infection, he would go ahead with the THR and I would take the anti-fungal medicine for the rest of my life. It is really hard on my body so I'm praying it is totally gone.

I will have had the spacer in for five months and am so ready to get it out. I find myself on an emotional roller coaster with all the waiting and worries so try to do one day at a time. I do, however, have an excellent surgeon that I trust completely.

Congratulations on starting PT and getting back to work. I pray that your healing continues. Thanks for keeping us up to date and let us know how you are doing.

REPLY
@mrfish

Okay, here's another update. It's a bit after the fact, bear with me.

So, to recap, on Feb 14 I finally got the antibiotic spacer removed after living with it for 3 months and functional hip hardware re-implanted Things were going great…I was back in physical therapy and regaining strength and mobility quickly. That’s about where we left off last time.

The dressing over the incision was hooked up to a small wound vac that I was supposed to wear for one week after being released from the hospital. Almost nothing drained from the incision into the wound vac until the day before it was supposed to come off. Then a bunch of “old” blood drained out and nearly filled the vac’s reservoir overnight. I called my ortho and they got me in right away…the drainage had stopped by then and he figured it was just a clot that had liquefied and drained. He considered putting another wound vac on with a new dressing, which I wasn’t very happy about. I was trying to get back to work and that’s not very easy if you have to drag around a bunch of post-surgical devices with their associated tubes and hoses (and this was also on a Friday afternoon and getting insurance approvals for another device wasn’t happening quickly on a Friday afternoon). Since the drainage had stopped, they re-dressed it with a bunch of gauze and tegaderm and I was to let them know if any drainage resumed.

Things went well thru the weekend until the following Tuesday (3/27) when, after a morning PT session, a bunch of new drainage occurred. Not blood this time, but a tannish fluid…and a quite a it of it, the gauze became saturated. I called and then texted a picture of the gauze to my ortho’s PA. They called me back right away, asked when I last ate anything and wanted me to come in for a “wash-out” surgery in 3 hours. Calling that a shock doesn’t really describe it…I guess the drainages I’d had were a clear sign something wasn’t right, but it’s hard to mentally prepare yourself for surgery and all that entails on such short notice.

So, I go in and do the wash-out that day and was put on IV antibiotics. I expected to stay in the hospital for another 2-3 days after surgery while they fine-tuned the antibiotics dosage. Two days later, my ortho tells me a culture they took during the wash-out was growing something but it probably would take another day until it grew enough for them to identify it. Throughout all the previous tests and cultures, they had never been able to successfully culture anything from my hip, so it was kind of a positive that they might finally know what, specifically, had been causing me all these problems.
The next evening, the ortho and my infectious disease specialist come into my hospital room to let me know the culture produced staph (not mrsa) and they were recommending yet another surgery. He said the chances success from the wash-out surgery I had just gone through and antibiotics was somewhere around 50-60%...if I agreed to one more surgery to swap out the hardware and continued antibiotics, we were told the chances of success went up to nearly 90%. I was really weary of another surgery (one week exactly after the wash-out), but the increased chances for success were pretty striking, so with my wife we decided to follow their recommendation. This was going be the 5th overall surgery on my right hip, and it would be surgery #4 since just last November, and a 3rd surgery in the span of just under 3 weeks. They made me stay in the hospital thru the weekend until the next surgery. That was a tough time; there was a lot of frustration, anger and tears.

Tomorrow marks 2 weeks since the most recent surgery (which was on 3/6). I’ve got a PICC line (again), giving myself cefazolin infusions three times a day, and taking rifampin capsules twice a day.

I’ve re-started PT once again, and I went back at work last week (6 days after surgery). It’s frustrating to have put in so much work to regain mobility just to have more surgeries kick me back down again. No more surgeries scheduled as of now; just waiting to see how this course of antibiotics goes. I need to talk with my infectious disease specialist again because I want to better understand his plans…what is he looking for in my weekly bloodwork? When does he anticipate discontinuing the antibiotics? What’s the plan after ending the antibiotics--hopefully not just “wait and see". What more can they/we do to make surer this treatment actually works?

Jump to this post

Thanks for your update. I can sure understand your worry and frustration. It takes a lot of courage to keep going through all this. Wishing the best for you.

REPLY
@mrfish

Okay, here's another update. It's a bit after the fact, bear with me.

So, to recap, on Feb 14 I finally got the antibiotic spacer removed after living with it for 3 months and functional hip hardware re-implanted Things were going great…I was back in physical therapy and regaining strength and mobility quickly. That’s about where we left off last time.

The dressing over the incision was hooked up to a small wound vac that I was supposed to wear for one week after being released from the hospital. Almost nothing drained from the incision into the wound vac until the day before it was supposed to come off. Then a bunch of “old” blood drained out and nearly filled the vac’s reservoir overnight. I called my ortho and they got me in right away…the drainage had stopped by then and he figured it was just a clot that had liquefied and drained. He considered putting another wound vac on with a new dressing, which I wasn’t very happy about. I was trying to get back to work and that’s not very easy if you have to drag around a bunch of post-surgical devices with their associated tubes and hoses (and this was also on a Friday afternoon and getting insurance approvals for another device wasn’t happening quickly on a Friday afternoon). Since the drainage had stopped, they re-dressed it with a bunch of gauze and tegaderm and I was to let them know if any drainage resumed.

Things went well thru the weekend until the following Tuesday (3/27) when, after a morning PT session, a bunch of new drainage occurred. Not blood this time, but a tannish fluid…and a quite a it of it, the gauze became saturated. I called and then texted a picture of the gauze to my ortho’s PA. They called me back right away, asked when I last ate anything and wanted me to come in for a “wash-out” surgery in 3 hours. Calling that a shock doesn’t really describe it…I guess the drainages I’d had were a clear sign something wasn’t right, but it’s hard to mentally prepare yourself for surgery and all that entails on such short notice.

So, I go in and do the wash-out that day and was put on IV antibiotics. I expected to stay in the hospital for another 2-3 days after surgery while they fine-tuned the antibiotics dosage. Two days later, my ortho tells me a culture they took during the wash-out was growing something but it probably would take another day until it grew enough for them to identify it. Throughout all the previous tests and cultures, they had never been able to successfully culture anything from my hip, so it was kind of a positive that they might finally know what, specifically, had been causing me all these problems.
The next evening, the ortho and my infectious disease specialist come into my hospital room to let me know the culture produced staph (not mrsa) and they were recommending yet another surgery. He said the chances success from the wash-out surgery I had just gone through and antibiotics was somewhere around 50-60%...if I agreed to one more surgery to swap out the hardware and continued antibiotics, we were told the chances of success went up to nearly 90%. I was really weary of another surgery (one week exactly after the wash-out), but the increased chances for success were pretty striking, so with my wife we decided to follow their recommendation. This was going be the 5th overall surgery on my right hip, and it would be surgery #4 since just last November, and a 3rd surgery in the span of just under 3 weeks. They made me stay in the hospital thru the weekend until the next surgery. That was a tough time; there was a lot of frustration, anger and tears.

Tomorrow marks 2 weeks since the most recent surgery (which was on 3/6). I’ve got a PICC line (again), giving myself cefazolin infusions three times a day, and taking rifampin capsules twice a day.

I’ve re-started PT once again, and I went back at work last week (6 days after surgery). It’s frustrating to have put in so much work to regain mobility just to have more surgeries kick me back down again. No more surgeries scheduled as of now; just waiting to see how this course of antibiotics goes. I need to talk with my infectious disease specialist again because I want to better understand his plans…what is he looking for in my weekly bloodwork? When does he anticipate discontinuing the antibiotics? What’s the plan after ending the antibiotics--hopefully not just “wait and see". What more can they/we do to make surer this treatment actually works?

Jump to this post

Thanks Robin. My biggest fear when my Ortho and ID docs came to suggest the surgery for this last hardware swap-out was that they were going to suggest I go back to a spacer again. Thank goodness that wasn't the case. The IV medications are a bit of a hassle, but fortunately I haven't had any adverse effects from them. I met with my ID doc yesterday to better understand the plan: it will be 6 weeks of the IV cefazolin and rifampin pills...followed by 6 more weeks of oral rifampin and levaquin with weekly bloodwork during these treatments. My CRP numbers have gone down very quickly under this new course (it was 7 with the blood drawn this Tuesday)...hopefully these drugs are doing the trick. I asked if they plan to do bloodwork after ending all of the antibiotics and he said he said said there's no clear medical preference about that and that he doesn't prefer to do ongoing blood work after antibiotic treatments end...he said blood indicators like CRP can fluctuate quite a bit if I get a cold, stub my toe, etc and it isn't all that informative, by itself, especially if I'm feeling good. However, if I do begin to present hip-related symptoms again they would then definitely want to do some blood work and perhaps an aspiration...but otherwise if I am feeling good it will be "wait and pray", in his own words.

I still can't get the nagging fear out of the back of my mind...the "what if". I'm sorry you are faced with another hard choice. I don't know what I'd do if faced with the suggestion to under go more surgeries, I guess I'd have to go with it, but each of these surgeries takes away a bit of me (literally and figuratively).

Hang in there, my thoughts are with you.

REPLY
@mrfish

Okay, here's another update. It's a bit after the fact, bear with me.

So, to recap, on Feb 14 I finally got the antibiotic spacer removed after living with it for 3 months and functional hip hardware re-implanted Things were going great…I was back in physical therapy and regaining strength and mobility quickly. That’s about where we left off last time.

The dressing over the incision was hooked up to a small wound vac that I was supposed to wear for one week after being released from the hospital. Almost nothing drained from the incision into the wound vac until the day before it was supposed to come off. Then a bunch of “old” blood drained out and nearly filled the vac’s reservoir overnight. I called my ortho and they got me in right away…the drainage had stopped by then and he figured it was just a clot that had liquefied and drained. He considered putting another wound vac on with a new dressing, which I wasn’t very happy about. I was trying to get back to work and that’s not very easy if you have to drag around a bunch of post-surgical devices with their associated tubes and hoses (and this was also on a Friday afternoon and getting insurance approvals for another device wasn’t happening quickly on a Friday afternoon). Since the drainage had stopped, they re-dressed it with a bunch of gauze and tegaderm and I was to let them know if any drainage resumed.

Things went well thru the weekend until the following Tuesday (3/27) when, after a morning PT session, a bunch of new drainage occurred. Not blood this time, but a tannish fluid…and a quite a it of it, the gauze became saturated. I called and then texted a picture of the gauze to my ortho’s PA. They called me back right away, asked when I last ate anything and wanted me to come in for a “wash-out” surgery in 3 hours. Calling that a shock doesn’t really describe it…I guess the drainages I’d had were a clear sign something wasn’t right, but it’s hard to mentally prepare yourself for surgery and all that entails on such short notice.

So, I go in and do the wash-out that day and was put on IV antibiotics. I expected to stay in the hospital for another 2-3 days after surgery while they fine-tuned the antibiotics dosage. Two days later, my ortho tells me a culture they took during the wash-out was growing something but it probably would take another day until it grew enough for them to identify it. Throughout all the previous tests and cultures, they had never been able to successfully culture anything from my hip, so it was kind of a positive that they might finally know what, specifically, had been causing me all these problems.
The next evening, the ortho and my infectious disease specialist come into my hospital room to let me know the culture produced staph (not mrsa) and they were recommending yet another surgery. He said the chances success from the wash-out surgery I had just gone through and antibiotics was somewhere around 50-60%...if I agreed to one more surgery to swap out the hardware and continued antibiotics, we were told the chances of success went up to nearly 90%. I was really weary of another surgery (one week exactly after the wash-out), but the increased chances for success were pretty striking, so with my wife we decided to follow their recommendation. This was going be the 5th overall surgery on my right hip, and it would be surgery #4 since just last November, and a 3rd surgery in the span of just under 3 weeks. They made me stay in the hospital thru the weekend until the next surgery. That was a tough time; there was a lot of frustration, anger and tears.

Tomorrow marks 2 weeks since the most recent surgery (which was on 3/6). I’ve got a PICC line (again), giving myself cefazolin infusions three times a day, and taking rifampin capsules twice a day.

I’ve re-started PT once again, and I went back at work last week (6 days after surgery). It’s frustrating to have put in so much work to regain mobility just to have more surgeries kick me back down again. No more surgeries scheduled as of now; just waiting to see how this course of antibiotics goes. I need to talk with my infectious disease specialist again because I want to better understand his plans…what is he looking for in my weekly bloodwork? When does he anticipate discontinuing the antibiotics? What’s the plan after ending the antibiotics--hopefully not just “wait and see". What more can they/we do to make surer this treatment actually works?

Jump to this post

@janelaine, my thoughts are with you and my fingers are crossed! Good luck with the re-implantation. I only had the spacer fr 3 months, compared to your 5, but it was such an immediate relief to not have the spacer-related pain that comes with every single movement. The PT after the spacer is a lot of work, my leg gradually roated inward during the spacer time of limited mobility and I'm still working to return that to its normal position. I think it's also put quite a bit of strain on my knee as I work to reposition things. Fortunately, each time it my knee begins to get aggravated, my PT tapes it and it settles down after a day of rest.

This is going to work for you, I just know it. Best wishes and let us know how it goes.

REPLY
@mrfish

Okay, here's another update. It's a bit after the fact, bear with me.

So, to recap, on Feb 14 I finally got the antibiotic spacer removed after living with it for 3 months and functional hip hardware re-implanted Things were going great…I was back in physical therapy and regaining strength and mobility quickly. That’s about where we left off last time.

The dressing over the incision was hooked up to a small wound vac that I was supposed to wear for one week after being released from the hospital. Almost nothing drained from the incision into the wound vac until the day before it was supposed to come off. Then a bunch of “old” blood drained out and nearly filled the vac’s reservoir overnight. I called my ortho and they got me in right away…the drainage had stopped by then and he figured it was just a clot that had liquefied and drained. He considered putting another wound vac on with a new dressing, which I wasn’t very happy about. I was trying to get back to work and that’s not very easy if you have to drag around a bunch of post-surgical devices with their associated tubes and hoses (and this was also on a Friday afternoon and getting insurance approvals for another device wasn’t happening quickly on a Friday afternoon). Since the drainage had stopped, they re-dressed it with a bunch of gauze and tegaderm and I was to let them know if any drainage resumed.

Things went well thru the weekend until the following Tuesday (3/27) when, after a morning PT session, a bunch of new drainage occurred. Not blood this time, but a tannish fluid…and a quite a it of it, the gauze became saturated. I called and then texted a picture of the gauze to my ortho’s PA. They called me back right away, asked when I last ate anything and wanted me to come in for a “wash-out” surgery in 3 hours. Calling that a shock doesn’t really describe it…I guess the drainages I’d had were a clear sign something wasn’t right, but it’s hard to mentally prepare yourself for surgery and all that entails on such short notice.

So, I go in and do the wash-out that day and was put on IV antibiotics. I expected to stay in the hospital for another 2-3 days after surgery while they fine-tuned the antibiotics dosage. Two days later, my ortho tells me a culture they took during the wash-out was growing something but it probably would take another day until it grew enough for them to identify it. Throughout all the previous tests and cultures, they had never been able to successfully culture anything from my hip, so it was kind of a positive that they might finally know what, specifically, had been causing me all these problems.
The next evening, the ortho and my infectious disease specialist come into my hospital room to let me know the culture produced staph (not mrsa) and they were recommending yet another surgery. He said the chances success from the wash-out surgery I had just gone through and antibiotics was somewhere around 50-60%...if I agreed to one more surgery to swap out the hardware and continued antibiotics, we were told the chances of success went up to nearly 90%. I was really weary of another surgery (one week exactly after the wash-out), but the increased chances for success were pretty striking, so with my wife we decided to follow their recommendation. This was going be the 5th overall surgery on my right hip, and it would be surgery #4 since just last November, and a 3rd surgery in the span of just under 3 weeks. They made me stay in the hospital thru the weekend until the next surgery. That was a tough time; there was a lot of frustration, anger and tears.

Tomorrow marks 2 weeks since the most recent surgery (which was on 3/6). I’ve got a PICC line (again), giving myself cefazolin infusions three times a day, and taking rifampin capsules twice a day.

I’ve re-started PT once again, and I went back at work last week (6 days after surgery). It’s frustrating to have put in so much work to regain mobility just to have more surgeries kick me back down again. No more surgeries scheduled as of now; just waiting to see how this course of antibiotics goes. I need to talk with my infectious disease specialist again because I want to better understand his plans…what is he looking for in my weekly bloodwork? When does he anticipate discontinuing the antibiotics? What’s the plan after ending the antibiotics--hopefully not just “wait and see". What more can they/we do to make surer this treatment actually works?

Jump to this post

Ok so now I'm confused. I thought when they found the staph infection that they pulled out the new hip they had just put in. Are you saying you are on IV antibiotics but the new hip is still in there? Let me know. Also, I've just been told that there is more than 1 kind of staph. So now I'm wondering if the staph infection that I had the first time wasn't gone because the antibiotics they were using weren't the right ones. And I just read about the one woman on this forum who had 5 staph infections and they finally had to amputate her whole leg. I'm really not sure if I even want to try this again. The thought of another surgery is depressing and scary. A few weeks ago I thought I'd give it another go but now I'm thinking no I won't. Take good care of you. Robin

REPLY
@mrfish

Okay, here's another update. It's a bit after the fact, bear with me.

So, to recap, on Feb 14 I finally got the antibiotic spacer removed after living with it for 3 months and functional hip hardware re-implanted Things were going great…I was back in physical therapy and regaining strength and mobility quickly. That’s about where we left off last time.

The dressing over the incision was hooked up to a small wound vac that I was supposed to wear for one week after being released from the hospital. Almost nothing drained from the incision into the wound vac until the day before it was supposed to come off. Then a bunch of “old” blood drained out and nearly filled the vac’s reservoir overnight. I called my ortho and they got me in right away…the drainage had stopped by then and he figured it was just a clot that had liquefied and drained. He considered putting another wound vac on with a new dressing, which I wasn’t very happy about. I was trying to get back to work and that’s not very easy if you have to drag around a bunch of post-surgical devices with their associated tubes and hoses (and this was also on a Friday afternoon and getting insurance approvals for another device wasn’t happening quickly on a Friday afternoon). Since the drainage had stopped, they re-dressed it with a bunch of gauze and tegaderm and I was to let them know if any drainage resumed.

Things went well thru the weekend until the following Tuesday (3/27) when, after a morning PT session, a bunch of new drainage occurred. Not blood this time, but a tannish fluid…and a quite a it of it, the gauze became saturated. I called and then texted a picture of the gauze to my ortho’s PA. They called me back right away, asked when I last ate anything and wanted me to come in for a “wash-out” surgery in 3 hours. Calling that a shock doesn’t really describe it…I guess the drainages I’d had were a clear sign something wasn’t right, but it’s hard to mentally prepare yourself for surgery and all that entails on such short notice.

So, I go in and do the wash-out that day and was put on IV antibiotics. I expected to stay in the hospital for another 2-3 days after surgery while they fine-tuned the antibiotics dosage. Two days later, my ortho tells me a culture they took during the wash-out was growing something but it probably would take another day until it grew enough for them to identify it. Throughout all the previous tests and cultures, they had never been able to successfully culture anything from my hip, so it was kind of a positive that they might finally know what, specifically, had been causing me all these problems.
The next evening, the ortho and my infectious disease specialist come into my hospital room to let me know the culture produced staph (not mrsa) and they were recommending yet another surgery. He said the chances success from the wash-out surgery I had just gone through and antibiotics was somewhere around 50-60%...if I agreed to one more surgery to swap out the hardware and continued antibiotics, we were told the chances of success went up to nearly 90%. I was really weary of another surgery (one week exactly after the wash-out), but the increased chances for success were pretty striking, so with my wife we decided to follow their recommendation. This was going be the 5th overall surgery on my right hip, and it would be surgery #4 since just last November, and a 3rd surgery in the span of just under 3 weeks. They made me stay in the hospital thru the weekend until the next surgery. That was a tough time; there was a lot of frustration, anger and tears.

Tomorrow marks 2 weeks since the most recent surgery (which was on 3/6). I’ve got a PICC line (again), giving myself cefazolin infusions three times a day, and taking rifampin capsules twice a day.

I’ve re-started PT once again, and I went back at work last week (6 days after surgery). It’s frustrating to have put in so much work to regain mobility just to have more surgeries kick me back down again. No more surgeries scheduled as of now; just waiting to see how this course of antibiotics goes. I need to talk with my infectious disease specialist again because I want to better understand his plans…what is he looking for in my weekly bloodwork? When does he anticipate discontinuing the antibiotics? What’s the plan after ending the antibiotics--hopefully not just “wait and see". What more can they/we do to make surer this treatment actually works?

Jump to this post

Totally understandable Robin, it's been a bit of blur for me too. When they found the staph (a few days after the wash-out surgery), they started me on the IV antibiotics immediately and scheduled a new THR a few days later. That last surgery replaced all the hardware with a new, fully functional, and clean THR (a single stage revision surgery, as opposed to a two-stage revision which involves the spacer).

REPLY
@mrfish

Okay, here's another update. It's a bit after the fact, bear with me.

So, to recap, on Feb 14 I finally got the antibiotic spacer removed after living with it for 3 months and functional hip hardware re-implanted Things were going great…I was back in physical therapy and regaining strength and mobility quickly. That’s about where we left off last time.

The dressing over the incision was hooked up to a small wound vac that I was supposed to wear for one week after being released from the hospital. Almost nothing drained from the incision into the wound vac until the day before it was supposed to come off. Then a bunch of “old” blood drained out and nearly filled the vac’s reservoir overnight. I called my ortho and they got me in right away…the drainage had stopped by then and he figured it was just a clot that had liquefied and drained. He considered putting another wound vac on with a new dressing, which I wasn’t very happy about. I was trying to get back to work and that’s not very easy if you have to drag around a bunch of post-surgical devices with their associated tubes and hoses (and this was also on a Friday afternoon and getting insurance approvals for another device wasn’t happening quickly on a Friday afternoon). Since the drainage had stopped, they re-dressed it with a bunch of gauze and tegaderm and I was to let them know if any drainage resumed.

Things went well thru the weekend until the following Tuesday (3/27) when, after a morning PT session, a bunch of new drainage occurred. Not blood this time, but a tannish fluid…and a quite a it of it, the gauze became saturated. I called and then texted a picture of the gauze to my ortho’s PA. They called me back right away, asked when I last ate anything and wanted me to come in for a “wash-out” surgery in 3 hours. Calling that a shock doesn’t really describe it…I guess the drainages I’d had were a clear sign something wasn’t right, but it’s hard to mentally prepare yourself for surgery and all that entails on such short notice.

So, I go in and do the wash-out that day and was put on IV antibiotics. I expected to stay in the hospital for another 2-3 days after surgery while they fine-tuned the antibiotics dosage. Two days later, my ortho tells me a culture they took during the wash-out was growing something but it probably would take another day until it grew enough for them to identify it. Throughout all the previous tests and cultures, they had never been able to successfully culture anything from my hip, so it was kind of a positive that they might finally know what, specifically, had been causing me all these problems.
The next evening, the ortho and my infectious disease specialist come into my hospital room to let me know the culture produced staph (not mrsa) and they were recommending yet another surgery. He said the chances success from the wash-out surgery I had just gone through and antibiotics was somewhere around 50-60%...if I agreed to one more surgery to swap out the hardware and continued antibiotics, we were told the chances of success went up to nearly 90%. I was really weary of another surgery (one week exactly after the wash-out), but the increased chances for success were pretty striking, so with my wife we decided to follow their recommendation. This was going be the 5th overall surgery on my right hip, and it would be surgery #4 since just last November, and a 3rd surgery in the span of just under 3 weeks. They made me stay in the hospital thru the weekend until the next surgery. That was a tough time; there was a lot of frustration, anger and tears.

Tomorrow marks 2 weeks since the most recent surgery (which was on 3/6). I’ve got a PICC line (again), giving myself cefazolin infusions three times a day, and taking rifampin capsules twice a day.

I’ve re-started PT once again, and I went back at work last week (6 days after surgery). It’s frustrating to have put in so much work to regain mobility just to have more surgeries kick me back down again. No more surgeries scheduled as of now; just waiting to see how this course of antibiotics goes. I need to talk with my infectious disease specialist again because I want to better understand his plans…what is he looking for in my weekly bloodwork? When does he anticipate discontinuing the antibiotics? What’s the plan after ending the antibiotics--hopefully not just “wait and see". What more can they/we do to make surer this treatment actually works?

Jump to this post

I didn't know there were different kinds of staph (besides regular and MRSA). I'll have to remember to ask my ID doc about that, but I have a lot of faith in him so I'm sure he's on top of it. Our decision to have the last surgery was not an easy one, but the way they presented the odds of success made it pretty compelling. But you're right, I think the normal chances of success kind of go out the window for us with repeated infections.

My ID doc even ran a battery of other tests to see if some other thing might be affecting my immune system and allowing these repeated infections. I can't rermember everything he said he tested for but it was stuff like Hep C, HIV, and more. All came back negative.

Given that it's staph (for me) I think I'd have to keep going with more treatment and surgeries if this go around doesn't successfully beat it...but that would certainly be another blow to my mental well-being. It (staph) isn't the kind of thing you can really allow to stay in there. It was interesting to read that janelaine said that long-term meds were an option for her fungal infection (albeit with significant negative side effects). I don't think there's long-term medication that can be taken to suppress staph (still another question to ask my ID doc next time).

REPLY
@mrfish

Okay, here's another update. It's a bit after the fact, bear with me.

So, to recap, on Feb 14 I finally got the antibiotic spacer removed after living with it for 3 months and functional hip hardware re-implanted Things were going great…I was back in physical therapy and regaining strength and mobility quickly. That’s about where we left off last time.

The dressing over the incision was hooked up to a small wound vac that I was supposed to wear for one week after being released from the hospital. Almost nothing drained from the incision into the wound vac until the day before it was supposed to come off. Then a bunch of “old” blood drained out and nearly filled the vac’s reservoir overnight. I called my ortho and they got me in right away…the drainage had stopped by then and he figured it was just a clot that had liquefied and drained. He considered putting another wound vac on with a new dressing, which I wasn’t very happy about. I was trying to get back to work and that’s not very easy if you have to drag around a bunch of post-surgical devices with their associated tubes and hoses (and this was also on a Friday afternoon and getting insurance approvals for another device wasn’t happening quickly on a Friday afternoon). Since the drainage had stopped, they re-dressed it with a bunch of gauze and tegaderm and I was to let them know if any drainage resumed.

Things went well thru the weekend until the following Tuesday (3/27) when, after a morning PT session, a bunch of new drainage occurred. Not blood this time, but a tannish fluid…and a quite a it of it, the gauze became saturated. I called and then texted a picture of the gauze to my ortho’s PA. They called me back right away, asked when I last ate anything and wanted me to come in for a “wash-out” surgery in 3 hours. Calling that a shock doesn’t really describe it…I guess the drainages I’d had were a clear sign something wasn’t right, but it’s hard to mentally prepare yourself for surgery and all that entails on such short notice.

So, I go in and do the wash-out that day and was put on IV antibiotics. I expected to stay in the hospital for another 2-3 days after surgery while they fine-tuned the antibiotics dosage. Two days later, my ortho tells me a culture they took during the wash-out was growing something but it probably would take another day until it grew enough for them to identify it. Throughout all the previous tests and cultures, they had never been able to successfully culture anything from my hip, so it was kind of a positive that they might finally know what, specifically, had been causing me all these problems.
The next evening, the ortho and my infectious disease specialist come into my hospital room to let me know the culture produced staph (not mrsa) and they were recommending yet another surgery. He said the chances success from the wash-out surgery I had just gone through and antibiotics was somewhere around 50-60%...if I agreed to one more surgery to swap out the hardware and continued antibiotics, we were told the chances of success went up to nearly 90%. I was really weary of another surgery (one week exactly after the wash-out), but the increased chances for success were pretty striking, so with my wife we decided to follow their recommendation. This was going be the 5th overall surgery on my right hip, and it would be surgery #4 since just last November, and a 3rd surgery in the span of just under 3 weeks. They made me stay in the hospital thru the weekend until the next surgery. That was a tough time; there was a lot of frustration, anger and tears.

Tomorrow marks 2 weeks since the most recent surgery (which was on 3/6). I’ve got a PICC line (again), giving myself cefazolin infusions three times a day, and taking rifampin capsules twice a day.

I’ve re-started PT once again, and I went back at work last week (6 days after surgery). It’s frustrating to have put in so much work to regain mobility just to have more surgeries kick me back down again. No more surgeries scheduled as of now; just waiting to see how this course of antibiotics goes. I need to talk with my infectious disease specialist again because I want to better understand his plans…what is he looking for in my weekly bloodwork? When does he anticipate discontinuing the antibiotics? What’s the plan after ending the antibiotics--hopefully not just “wait and see". What more can they/we do to make surer this treatment actually works?

Jump to this post

I had no idea these infections could be so difficult to treat. I'm trying to stay optimistic about my infection being gone. I do trust my doctors and will ultimately follow their advice. I will be happy to get rid of the spacer due to pain, especially at night. You are right, Mr. Fish, that the infection cannot go untreated. I did talk to a friend this week whose husband was successful in treating and getting rid of an infection, so there is reason to be hopeful. This whole process is exhausting. I'm glad to have this forum to share the journey.

REPLY
@mrfish

Okay, here's another update. It's a bit after the fact, bear with me.

So, to recap, on Feb 14 I finally got the antibiotic spacer removed after living with it for 3 months and functional hip hardware re-implanted Things were going great…I was back in physical therapy and regaining strength and mobility quickly. That’s about where we left off last time.

The dressing over the incision was hooked up to a small wound vac that I was supposed to wear for one week after being released from the hospital. Almost nothing drained from the incision into the wound vac until the day before it was supposed to come off. Then a bunch of “old” blood drained out and nearly filled the vac’s reservoir overnight. I called my ortho and they got me in right away…the drainage had stopped by then and he figured it was just a clot that had liquefied and drained. He considered putting another wound vac on with a new dressing, which I wasn’t very happy about. I was trying to get back to work and that’s not very easy if you have to drag around a bunch of post-surgical devices with their associated tubes and hoses (and this was also on a Friday afternoon and getting insurance approvals for another device wasn’t happening quickly on a Friday afternoon). Since the drainage had stopped, they re-dressed it with a bunch of gauze and tegaderm and I was to let them know if any drainage resumed.

Things went well thru the weekend until the following Tuesday (3/27) when, after a morning PT session, a bunch of new drainage occurred. Not blood this time, but a tannish fluid…and a quite a it of it, the gauze became saturated. I called and then texted a picture of the gauze to my ortho’s PA. They called me back right away, asked when I last ate anything and wanted me to come in for a “wash-out” surgery in 3 hours. Calling that a shock doesn’t really describe it…I guess the drainages I’d had were a clear sign something wasn’t right, but it’s hard to mentally prepare yourself for surgery and all that entails on such short notice.

So, I go in and do the wash-out that day and was put on IV antibiotics. I expected to stay in the hospital for another 2-3 days after surgery while they fine-tuned the antibiotics dosage. Two days later, my ortho tells me a culture they took during the wash-out was growing something but it probably would take another day until it grew enough for them to identify it. Throughout all the previous tests and cultures, they had never been able to successfully culture anything from my hip, so it was kind of a positive that they might finally know what, specifically, had been causing me all these problems.
The next evening, the ortho and my infectious disease specialist come into my hospital room to let me know the culture produced staph (not mrsa) and they were recommending yet another surgery. He said the chances success from the wash-out surgery I had just gone through and antibiotics was somewhere around 50-60%...if I agreed to one more surgery to swap out the hardware and continued antibiotics, we were told the chances of success went up to nearly 90%. I was really weary of another surgery (one week exactly after the wash-out), but the increased chances for success were pretty striking, so with my wife we decided to follow their recommendation. This was going be the 5th overall surgery on my right hip, and it would be surgery #4 since just last November, and a 3rd surgery in the span of just under 3 weeks. They made me stay in the hospital thru the weekend until the next surgery. That was a tough time; there was a lot of frustration, anger and tears.

Tomorrow marks 2 weeks since the most recent surgery (which was on 3/6). I’ve got a PICC line (again), giving myself cefazolin infusions three times a day, and taking rifampin capsules twice a day.

I’ve re-started PT once again, and I went back at work last week (6 days after surgery). It’s frustrating to have put in so much work to regain mobility just to have more surgeries kick me back down again. No more surgeries scheduled as of now; just waiting to see how this course of antibiotics goes. I need to talk with my infectious disease specialist again because I want to better understand his plans…what is he looking for in my weekly bloodwork? When does he anticipate discontinuing the antibiotics? What’s the plan after ending the antibiotics--hopefully not just “wait and see". What more can they/we do to make surer this treatment actually works?

Jump to this post

Bear with me I'm a little slow these days. So what you're saying is despite the fact that you have a staph infection, days later they put in a new THR? How was he able to do that? I thought the staph had to be completely gone before new hardware could be used.

REPLY
@mrfish

Okay, here's another update. It's a bit after the fact, bear with me.

So, to recap, on Feb 14 I finally got the antibiotic spacer removed after living with it for 3 months and functional hip hardware re-implanted Things were going great…I was back in physical therapy and regaining strength and mobility quickly. That’s about where we left off last time.

The dressing over the incision was hooked up to a small wound vac that I was supposed to wear for one week after being released from the hospital. Almost nothing drained from the incision into the wound vac until the day before it was supposed to come off. Then a bunch of “old” blood drained out and nearly filled the vac’s reservoir overnight. I called my ortho and they got me in right away…the drainage had stopped by then and he figured it was just a clot that had liquefied and drained. He considered putting another wound vac on with a new dressing, which I wasn’t very happy about. I was trying to get back to work and that’s not very easy if you have to drag around a bunch of post-surgical devices with their associated tubes and hoses (and this was also on a Friday afternoon and getting insurance approvals for another device wasn’t happening quickly on a Friday afternoon). Since the drainage had stopped, they re-dressed it with a bunch of gauze and tegaderm and I was to let them know if any drainage resumed.

Things went well thru the weekend until the following Tuesday (3/27) when, after a morning PT session, a bunch of new drainage occurred. Not blood this time, but a tannish fluid…and a quite a it of it, the gauze became saturated. I called and then texted a picture of the gauze to my ortho’s PA. They called me back right away, asked when I last ate anything and wanted me to come in for a “wash-out” surgery in 3 hours. Calling that a shock doesn’t really describe it…I guess the drainages I’d had were a clear sign something wasn’t right, but it’s hard to mentally prepare yourself for surgery and all that entails on such short notice.

So, I go in and do the wash-out that day and was put on IV antibiotics. I expected to stay in the hospital for another 2-3 days after surgery while they fine-tuned the antibiotics dosage. Two days later, my ortho tells me a culture they took during the wash-out was growing something but it probably would take another day until it grew enough for them to identify it. Throughout all the previous tests and cultures, they had never been able to successfully culture anything from my hip, so it was kind of a positive that they might finally know what, specifically, had been causing me all these problems.
The next evening, the ortho and my infectious disease specialist come into my hospital room to let me know the culture produced staph (not mrsa) and they were recommending yet another surgery. He said the chances success from the wash-out surgery I had just gone through and antibiotics was somewhere around 50-60%...if I agreed to one more surgery to swap out the hardware and continued antibiotics, we were told the chances of success went up to nearly 90%. I was really weary of another surgery (one week exactly after the wash-out), but the increased chances for success were pretty striking, so with my wife we decided to follow their recommendation. This was going be the 5th overall surgery on my right hip, and it would be surgery #4 since just last November, and a 3rd surgery in the span of just under 3 weeks. They made me stay in the hospital thru the weekend until the next surgery. That was a tough time; there was a lot of frustration, anger and tears.

Tomorrow marks 2 weeks since the most recent surgery (which was on 3/6). I’ve got a PICC line (again), giving myself cefazolin infusions three times a day, and taking rifampin capsules twice a day.

I’ve re-started PT once again, and I went back at work last week (6 days after surgery). It’s frustrating to have put in so much work to regain mobility just to have more surgeries kick me back down again. No more surgeries scheduled as of now; just waiting to see how this course of antibiotics goes. I need to talk with my infectious disease specialist again because I want to better understand his plans…what is he looking for in my weekly bloodwork? When does he anticipate discontinuing the antibiotics? What’s the plan after ending the antibiotics--hopefully not just “wait and see". What more can they/we do to make surer this treatment actually works?

Jump to this post

No worries, My explanation earlier wasn't very clear...I still have a hard time keeping all the surgery dates straight in my own head. But, that's exactly what they did.

When I was doing background reading for all of this (before I got the spacer), I found quite a few journal articles from the UK that examined the different success rates between single-stage revision and the 2-stage revision. While the 2-stage had higher overall sucess, the success rate for single stage could be close to the same if the infection was caught early. I guess that's the debatable part with my surgery: I clearly had the infection for nearly 12 months overall, but it was nearly wiped out during the previous 2-stage process. and perhaps they considered me clean or nearly clean after that point in time. Time will tell, I guess. I was glad to not have to go back to a spacer...but I guess that could be in the cards again if this current plan doesn't take care of it. I still find it so hard to believe the spacer (loaded with its own antibiotics, along with the 6 weeks of vancomycin didn't do the trick.

Earlier in this thread, @lynzze suggested I try to keep the spacer as long as possible. Even my ID doc suggested keeping the spacer for 4-6 weeks after ending the IV vancomycin to have a better chance to see if the infection was truly gone before going through with the re-implantation surgery. He said many orthos like to get the new hardware re-implanted too soon, in his opintion, after the course of IV antibiotics is finished. And in hindsight, I think I might have agreed to go with re-implantation too soon (I think it was only about 3 weeks later), but I was soooo ready to get rid of that damn spacer. Anyway, that's not medical advice from me, but food for thought and things to discuss with your ortho and ID docs.

REPLY
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