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

Hello. I'm one of those people who always forgets to take my pain meds on time. First I set the timer on my cell phone to go off every 4 hours. Easy. Then I started having trouble remembering what I took and how much. So I made a "journal page " on my computer. I call it Pain and medication journal. Then I typed Time- with a few spaces and below it typed Meds taken with a few spaces and typed Notes. I lined it all up. I did that 6 different times on the same page and printed it out twice. I cut it in half and taped them side by side and copied it 15 times. I cut those copies in half so I had 30 of them which I paper clipped together. At the top I write the DAY and DATE ie. Tuesday December 5th and so on for the month. I found this a lot easier than writing in a bound journal because each page is a new day. And I take notes as I'm taking my meds. For example if I wake up at 4am in horrible pain I write just that "up at 4am, terrible pain in upper hip radiating down to my foot." Took 2 diluded, 1 Robaxin, 2 Tylenol etc. I keep the pages so I can see if a pattern is developing. Like am I waking up everyday at 4am? Was I able to sleep until 8am before the pain got too bad? This works for me because I feel like when they removed my hip joint, they took half my brain too. I just can't remember all the meds, exercises etc. Maybe this could work for someone else having a hard time remembering meds and such. I hope so. Robin:)

This is a great tip @froggy1. I get the catheter for my pain block taken out this week and that's really the last thing keeping me from showering, especially with with a trick for the PICC like you suggest here. I was thinking a washcloth under a bunch of wraps of saran wrap and then a little tape at each end would probably do the trick, too. The home-visit nurses who bring my antibiotics and clean/maintain the PICC said to keep it as dry as possible when washing up, but that keeping it totally, 100% dry isn't really critical; just avoid significant direct water (especially submersion if you're bathing).

I've done plenty of complaining about all the accessories I have had to drag along after this first of two surgeries. I was able to ditch the Active Care leg compression cuffs last week (yay!), and as I just mentioned my pain catheter/pump comes out this week. The last one I'll still need to pack around for a while is a wound vac. When my joint infection finally presented itself in an obvious fashion, it was as a series of growing abscesses that pushed out via a fistula (channel) from the joint and directly through the scar from my first (anterior) THR surgery. When they did this last surgery to remove the THR and place the spacer, they also did considerable debridement of that wound which resulted in quite a large "crater" on the front of my leg. This wound gets its' dressing changed twice a week. It's packed with porous sponge, then covered with a tegaderm-like film and then a tube over the top that goes to a smallish (maybe 10"x6"x2") vacuum pump. It has been fascinating watching how quickly this has helped this large & deep wound close itself up. I've clearly got some more time to stay attached to this one...but at least I can see a significant value to having to pack it along with me everywhere I go.

Has anyone else had to use one of these for wound care?

I guess some doctors like to continue their use through some of the epidermal (skin) formation, while others just remove it once the wound has closed enough and let the scar tissue/skin form on its own? I'm not soo sure about that one, though. It's on my list of things to talk to my ortho about during our next follow-up.

5-week update: I met with my infectious disease specialist two days ago and he said that if my bloodwork from this week (drawn yesterday) looks good, he expected to take me offf the antibiotics on Dec 26 (what a great Christmas present!!) Then, it'll be a matter of waiting anywhere from 3-6 weeks before the next surgery to make sure the infection doesn't come back. He said infectious disease docs usually prefer to wait a little longer than the orthopedic surgeons for the re-implantation -- the extra time, in his opinion, gives more confidence that the infection is gone. I also happen to have a follow up appointment with my ortho on Dec 26, so we'll see what he has to say. I definitely want to do as much as I can to make sure I don't have to go through all of this again, so I'd be okay with waiting a little longer before the new THR. At least once I'm off the IV antibiotics, I'll have the PICC line removed will be able to start using crutches instead of a walker. My pain is still problematic, but reasonably under control with meds, and my mobility is still very limited.

Jan @janelaine how are things going for you?

Hello - I've been thinking about you and wondering how you are doing. Good news from your infectious disease doc that the PICC line gets to come out.
And I agree that waiting a bit longer at this point makes sense - we do not want to go through this again. I don't have an appointment to see my infectious disease doctor yet but do see my ortho doc on January 4 with lab work done next week. I was told they go a "little" longer with fungal infections because they are so hard to get rid of so I don't know what that means other than every day puts me closer to the goal of THR. Pain is problematic for me as well plus sitting so much causes problems in and of itself. Haven't been able to find a comfy cushion. I don't do well on pain meds so use Tylenol sparingly. I might get the go-ahead to use more weight-bearing so I can use the walker more, I totally understand about limited mobility and the precautions we have to take just like having a THR. Sometimes I just want to get up and walk! This definitely challenges my patience. It is very difficult to have to rely on others for help with almost everything.

Wishing you a happy holiday season, My family put up a tree and decorated so we are looking quite festive around here.

Stay in touch - I will check in after January 4. Let me know what your ortho doc has to say.

So sorry for your pain and follow up need for surgery. While I’m thoroughly uninformed of but intrigued by an antibiotic spacer, I have concerns that you seem to have not broached with your surgeon, or a/some of his-her patients that have had this insertion. You might also choose to get a second medical opinion, which is totally reasonable, to grow your information and comfort zone with the decision you’ve made.
I’ve had too many surgeries, including an anterior cervical spine fusion and did a huge amount of research, posed a lot of questions to my surgeon until I felt sure that what was scheduled was in my best interest, all things considered.
You deserve to have every question or concern addressed and if you want feedback from someone who has experienced the procedure, ask your Dr for referrals.
Ask for what you want! Good luck!

Thank you for your suggestions, @shenriq. I did quite a bit of online research about treatment options once my infection was diagnosed, as well as speaking with my infectious disease specialist. There are a lot of medical journal articles online that looked at this, and it seemed quite clear that non-surgical treatment (antibiotics only) was really only an option if the infection is discovered and treatments began within just a few days of the onset...otherwise, surgical revision is required to address the infection. There were a number of journal articles, particularly from the UK, where they compared single-stage and two-stage revisions for infected hip implants. From what I saw, the two-stage (two surgeries and the antibiotic spacer) had significantly better success rates than just a single surgery to swap out hardware.

As far as mobility, and as my ortho explained, that really varies from patient to patient. For me, it's now been 8 weeks since they removed the infected joint and implanted the spacer and I'm still needing to use a walker or crutches to get around. I've briefly tried using just a cane, but that still puts too much weight (and pain) on my right leg. For the most part, there's no pain when I'm not moving around, but movement is slow and still always comes with some degree of pain. When I'm at home, it seems the walker is just more convenient than crutches most of the time. Fortunately, I have a job that allows me the opportunity to do some work from home/electonically but I've been wanting to get out of the house. So this week I began going into work for 4-5 hours a day and using crutches to get around when there. I've been having my wife or son drive me...I'm in no condition to be driving a vehicle for two reasons: my right leg doesn't have the strength or agility to safely control the gas/brake pedals and I'm also still taking narcotic pain meds. While I've been able to reduce the amount of meds I've been taking, there is no doubt my judgement and reaction times are still compromised to some degree (especially with our icy roads).

But, after just two days of going into the office, I've had a little swelling return and my joint is much more stiff and painful than it had been before. So, I'm home resting it today. Maybe I'll get a little more mobility if I just keep at it, but I think this is most likely as good as it's going to get until I get a functioning hip joint re-implanted. Next week, I think I'll try going into the office every other day (MWF) and see if that works better.

On Friday this week, they will draw out (aspirate) and culture some fluid from my hip joint to make sure the infection is/remains clear. My re-implantation surgery is scheduled for Feb 14, if everything contiues to look good. It's frustrating that it's still more than a month away (and will be almost exactly 3 months from the first surgery)...but as I mentioned before, longer waits before re-implantation should hopefully provide some more assurance that the infection is truly gone.

@janelaine, I hope you're doing well. Is your second surgery on the calendar yet?

Best,
Art in AK

I appreciate your sharing more of the details of your situation and regret not being able to provide more information or support. The complexity of your hip is extremely curious, but I'm sending you good wishes and every success with journey, going forward.
I had an afterthought, since you mentioned having done a lot of research. I've learned quite a lot of information on a variety of subjects, from the National Institutes of Health. They are a repository of research and information, that the public has access to, that they will mail to you. I hope this helps.
Best wishes and lots of luck, for a successful healing and full usage, without pain.
Good luck to you!

Time for an update on how I'm doing.On November 4, 2017 I had a spacer put in my right hip due to a fungal infection. I saw my ortho doc last week The lab work shows the infection levels are coming down which is great news. I see him again in six weeks to see where my lab results are. IF the infection is gone, I will have a four week drug=free holiday. If nothing shows up at the end of the four weeks, I can schedule my THR. That's a big IF as the fungal infection is hard to get rid of so I'm just doing this one day at a time. I did get permission to do 50% weight bearing on my right leg so that means I can use a rolling walker and get around much better.

Happy New Year to all of you who are on this journey. Thanks for your support.
janelaie

Thanks for your update. I'm having the same issues with pain. I am delighted to be using the walker and put 59% weight on my right leg, even though I feel like I'm using some muscles that are tight and sore. I save my pain meds until bedtime so I can sleep. Let us know what the aspiration and culture show - hopefully no infection so you can proceed with surgery on Valentine's Day. What a sweet gift that would be. I have been out of the house several times, primarily for appointments but did sneak in a visit to Costco using one of their carts.

Jan in WA

Here's my most recent update: I'm scheduled to have my next (and hopefully last) hip surgery on Wednesday, Feb 14, when they plan to remove the antibiotic spacer and install fully-functional new hardware -- just about three months since the spacer was installed.

I had to undergo two hip aspirations a few weeks ago (where a loooong needle is used to draw fluid from the joint). During the first one, they drew some fluid but someone messed up and they weren't able to culture the sample (it was mistakenly sent for processing to a lab out of state and too much time had passed). So, they scheduled a not-very-happy me for a second aspiration but unfortunately weren't able to get any fluid that time.

According to the docs, my blood work looks good. It is frustrating to me that throughout all of this there were no successful cultures to figure out what kind of microbe was causing my infection, nor (most recently) to confirm that the infection is truly cleared out. There are only the indirect indicators from blood & lab work. My ortho tells me that during this week's surgery, samples will be taken -- and processed -- while I'm still on the operating table. If those indicate that there is still an infection, they will abort the installation of working hardware and instead re-implant another antibiotic spacer. However, he said that they have never had that occur. I guess that gives me some comfort?

But (beside having this blasted spacer in my hip and its' pain & limitations) I feel good and I have no reason to believe the infection isn't gone. I'm looking forward to this next surgery and the recovery that will come after that. I'm looking forward to putting the last six (or so) challenging months behind me -- I just can't shake this fear in the back of my mind of possibly having to go through this all again should an infection reoccur.

I'm not driving myself, but for these last few weeks, I have been going in to work at the office for three days a week (M,W,F) and using crutches. While seated at my desk, I need to get up and move around a little bit every 30 minutes or so. If I go longer, it's much more painful and harder to get things worked out and moving again. Fortunately, I have a motorized stand-up desk that I can put up or down and I'll also sometimes spend a little time standing and shifting some weight between both legs. I still cannot bear much more than 50% normal weight on my right leg.

At home, I prefer to use the walker, it's just so much more convenient. The extra activity certainly comes with additional pain. Right now, after being at work all day today, I my visibly swollen right leg elevated and an ice pack on my hip.

I'll post another update next week after my surgery. Fingers crossed.