Hip Spacer is a Nightmare

Posted by gncellist @gncellist, May 26, 2019

I was born with bilateral hip dysplasia – a very severe case in which I basically had no hips. A had multiple surgeris from age 3 – 12 and then, finally my first replacement at 19. The first replacement (left) lasted 9.5 years. It was titanium – then the latest and greatest. Unfortunately, titanium is a soft metal, aso when the cement cracked, it damaged the femora implant and I need another complete THR.That one was botched (long story). The next on that side (different doctor) worked well and lasted 23 years, but no one bothered to warn me about osteolysis – the plastic of the socket breaking down the surrounding bone into Swiss cheese – even though it was well-known in the medical community 15 years ago (fortunately, my right hip was revised in 2008 using a plastic in the socket that doesn't cause this damage; it's at 13 years and counting). Last May, I had my fourth revision of the left side and I picked up a staph infection, resulting in emergency surgery in July (I was going septic) , followed b 6 weeks of IV antibiotics – during which we discovered a couple of new antibiotic allergies – followed by oral antibiotics. Months of excruciating pain and joint instability later, I had a cement spacer implanted recently. It is a NIGHTMARE. When I awoke in Recovery, I was terrified by the movement, pain, and noise of the spacer. was told all are normal, but no one warned me to expect them. I've been home for 2 weeks now, getting around within the apartment on crutches (20% weight-bearing), but the spacer shifts constantly – even when I'm not moving sometimes. THis is so much worse than following THR and revisions! And, of course,there is no real healing (except for the incision) until after the next surgery, tentatively scheduled for July 15, assuming the infection is gone and the custom joint is ready then. Oh, and I'm now allergic to the IV antibiotic I used without issue last year, so I'm on a new one. At least the allergy wasn't to the Vanco in the spacer!
Would love to hear some "light at the end of the tunnel" stories from people who've been through this.

Hi @gncellist and welcome to Connect. the pain you are experiencing must be so frustrating, and sounds awful.

I wanted to share this discussion on mobility with a hip spacer in hopes you can learn from others' experience: https://connect.mayoclinic.org/discussion/what-kind-of-mobility-can-i-expect-with-an-antibiotic-spacer-in-my-hip/?pg=1#chv4-comment-stream-header

In addition, I'd like to introduce you to fellow Connect members, @linjane @izabel and @mzallen as they have experience with hip spacer's and may be able to offer you support.

Back to you @gncellist what are your doctor's telling you at this point?

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@ethanmcconkey

Hi @gncellist and welcome to Connect. the pain you are experiencing must be so frustrating, and sounds awful.

I wanted to share this discussion on mobility with a hip spacer in hopes you can learn from others' experience: https://connect.mayoclinic.org/discussion/what-kind-of-mobility-can-i-expect-with-an-antibiotic-spacer-in-my-hip/?pg=1#chv4-comment-stream-header

In addition, I'd like to introduce you to fellow Connect members, @linjane @izabel and @mzallen as they have experience with hip spacer's and may be able to offer you support.

Back to you @gncellist what are your doctor's telling you at this point?

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Thank you. My doctors are saying nothing right now – we’re just in a holding pattern until the needle aspiration 2 weeks after the IV antibiotic course is done. And my surgeon says he doesn’t know when the custom joint will be ready; only that it’s being made. MeanwhileI’ve lost my whole summer – no swimming, no cycling, not even walks. AndI’m a cellist who can’t play the cello with the spacer (& is missing out on my summer concert series, of which I missed 2 of 4 concerts due to last year’s emergency surgery for the staph infection. This whole thing has shaken me to the core – surgery has never faxed me, but this terrifies me -all the more because I keep seeing stories of patients who had to have the spacer repeated 2 or more times or took years to have their infection eradicated.

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@gncellist

Thank you. My doctors are saying nothing right now – we’re just in a holding pattern until the needle aspiration 2 weeks after the IV antibiotic course is done. And my surgeon says he doesn’t know when the custom joint will be ready; only that it’s being made. MeanwhileI’ve lost my whole summer – no swimming, no cycling, not even walks. AndI’m a cellist who can’t play the cello with the spacer (& is missing out on my summer concert series, of which I missed 2 of 4 concerts due to last year’s emergency surgery for the staph infection. This whole thing has shaken me to the core – surgery has never faxed me, but this terrifies me -all the more because I keep seeing stories of patients who had to have the spacer repeated 2 or more times or took years to have their infection eradicated.

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Hi gncellist my name is Lin I'm from the UK. I had my first R. THR in Feb 2017 for osteoarthritis. My L. was replaced in Sept of the same year. No problems.
A few weeks before it was replaced I noticed a lump over the site of the R. replacement but everyone dismissed it.
At my 6 week appt for the L. I got it checked by my consultant , who didn't dismiss it! It turned out to be an abscess containing staph Caprae. I underwent excision and debridement of wound followed by 6 weeks oral antibiotics. 2 weeks later I had flu like symptoms the infection was back as it was on the bio plates of the prosthesis. Things dont happen quick here in the UK! I went to surgery in June and had my hip removed and my spacer fitted and a picc line for 7 weeks of IV antibiotics. The spacer is an instrument of torture, nobody warned me how bad it was going to be but you do get used to it. The clunking ,clicking and noise is normal as is the pain and discomfort. In hospital I used to get them to lift and rotate my leg to get it to clunk into a more comfortable position. it worked for me! I was allowed to 50% weight bear.
I too lost most of last year so I can feel your pain, but it's necessary if you want to get well, dont dwell on it, use that energy and turn it into positive energy to get better. My hip was replaced end of October 2019, 4 1/2 months later.
Unfortunately I had to have a plate and wires to secure a non healing fracture from the removal, which has caused me some bother and I returned to theatre 4 weeks ago to have it removed. I'm pleased to say already I'm walking better than I have walked in years. Hang in on there! (these are the words of my Consultant, I dont know how many times he has said this!!!! but he's right. I feel I'm almost, if not there now). I had swabs at my last OP which I know are clear. Unfortunatly my post OP appt with him was postponed and am now due for that next week. I feel I'm lucky, I had no problems with any drugs. It has been the hardest 2 1/2 years of my life but I survived it. Good luck and stay strong. Lin

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@linjane

Hi gncellist my name is Lin I'm from the UK. I had my first R. THR in Feb 2017 for osteoarthritis. My L. was replaced in Sept of the same year. No problems.
A few weeks before it was replaced I noticed a lump over the site of the R. replacement but everyone dismissed it.
At my 6 week appt for the L. I got it checked by my consultant , who didn't dismiss it! It turned out to be an abscess containing staph Caprae. I underwent excision and debridement of wound followed by 6 weeks oral antibiotics. 2 weeks later I had flu like symptoms the infection was back as it was on the bio plates of the prosthesis. Things dont happen quick here in the UK! I went to surgery in June and had my hip removed and my spacer fitted and a picc line for 7 weeks of IV antibiotics. The spacer is an instrument of torture, nobody warned me how bad it was going to be but you do get used to it. The clunking ,clicking and noise is normal as is the pain and discomfort. In hospital I used to get them to lift and rotate my leg to get it to clunk into a more comfortable position. it worked for me! I was allowed to 50% weight bear.
I too lost most of last year so I can feel your pain, but it's necessary if you want to get well, dont dwell on it, use that energy and turn it into positive energy to get better. My hip was replaced end of October 2019, 4 1/2 months later.
Unfortunately I had to have a plate and wires to secure a non healing fracture from the removal, which has caused me some bother and I returned to theatre 4 weeks ago to have it removed. I'm pleased to say already I'm walking better than I have walked in years. Hang in on there! (these are the words of my Consultant, I dont know how many times he has said this!!!! but he's right. I feel I'm almost, if not there now). I had swabs at my last OP which I know are clear. Unfortunatly my post OP appt with him was postponed and am now due for that next week. I feel I'm lucky, I had no problems with any drugs. It has been the hardest 2 1/2 years of my life but I survived it. Good luck and stay strong. Lin

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Thank you, Lin. I’m sorry that this happened after your first (or at all). My first THR was back in 1982, when I was 19.ir,s appalling and frightening that these infections have become so ubiquitous – doesn’t matter which hospital (or country).one concern you and I don’t share, though: If I lose my job because this drags on beyond the projected 4 months, I will lose my health benefits and my husband’s (though I can pay for them for up to 18 months at an exorbitant rate – especially for someone with no salary)

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Is ther anyone on here who’s only needs the spacer once and then proceeded directly to re-replacements? My ID doc said it’s rare that this isn’t the case, yet most stories here contradict that.

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@gncellist

Is ther anyone on here who’s only needs the spacer once and then proceeded directly to re-replacements? My ID doc said it’s rare that this isn’t the case, yet most stories here contradict that.

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Sorry for the many typos. In English: Is there anyone on here who’s only needed the spacer once and then proceeded directly to implantation of the new joint?

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@gncellist

Is ther anyone on here who’s only needs the spacer once and then proceeded directly to re-replacements? My ID doc said it’s rare that this isn’t the case, yet most stories here contradict that.

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Of course I say things are slow with the NHS as there are alot of cut backs these day, but it is free so I shouldn't complain. The treatment I have had has been exemplary and I am very grateful. My work were very good they have paid me whilst I couldn't work and let me back to do a less arduous job when I wanted to come back so again I was lucky. I'm so sorry you have these worries.
The research I did beforehand said if I remember correctly that 85% of cases are successful. Most people only need one. Of course that means 15% have more surgery. I'm keeping everything crossed that I'm in the 85%. Only time will tell.
Lin x

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@linjane

Of course I say things are slow with the NHS as there are alot of cut backs these day, but it is free so I shouldn't complain. The treatment I have had has been exemplary and I am very grateful. My work were very good they have paid me whilst I couldn't work and let me back to do a less arduous job when I wanted to come back so again I was lucky. I'm so sorry you have these worries.
The research I did beforehand said if I remember correctly that 85% of cases are successful. Most people only need one. Of course that means 15% have more surgery. I'm keeping everything crossed that I'm in the 85%. Only time will tell.
Lin x

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I wish you luck, as well. What I've learned over the years is that,whatever the overall stats, each individual has a 50%/50% chance.

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Update: I'm going on 4 months with the spacer, even though the infection has been gone since at least mid-July. Now the delay is that Zimmer didn't start making the new, highly customized acetabular implant until mid-July and then had to scrap it toward the end of the manufacturing process and start over. The reimplantation was originally scheduled for July 15, then August 26, and then, on the night of August 22, my doctor informed me that the implant hadn't arrived yet.

Zimmer says that they HOPE to get the implant to my doctor by Sept. 11, but can't guarantee it. And, mind you, I had to do all of the work of chasing down someone at Zimmer to get information and they've changed their story multiple times.By the time I'm reasonably ambulatory, I will have missed swimming (already past), cycling, and my summer concert series, and I'm just glad I don't have any performances scheduled until November 22 – and could miss that one, if necessary, as it's with my husband's jazz quartet, which can perform without me. First concert with my ensemble is January 11. I can't rehearse with anyone and can barely practice with the spacer. The pain, waiting, uncertainty (and worry that the spacer will break through the paper-thin pelvic wall during the delay) and boredom are driving me mad, and I'm not sleeping – if my boss weren't accommodating me, I'd really have nothing to do.

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@gncellist

Update: I'm going on 4 months with the spacer, even though the infection has been gone since at least mid-July. Now the delay is that Zimmer didn't start making the new, highly customized acetabular implant until mid-July and then had to scrap it toward the end of the manufacturing process and start over. The reimplantation was originally scheduled for July 15, then August 26, and then, on the night of August 22, my doctor informed me that the implant hadn't arrived yet.

Zimmer says that they HOPE to get the implant to my doctor by Sept. 11, but can't guarantee it. And, mind you, I had to do all of the work of chasing down someone at Zimmer to get information and they've changed their story multiple times.By the time I'm reasonably ambulatory, I will have missed swimming (already past), cycling, and my summer concert series, and I'm just glad I don't have any performances scheduled until November 22 – and could miss that one, if necessary, as it's with my husband's jazz quartet, which can perform without me. First concert with my ensemble is January 11. I can't rehearse with anyone and can barely practice with the spacer. The pain, waiting, uncertainty (and worry that the spacer will break through the paper-thin pelvic wall during the delay) and boredom are driving me mad, and I'm not sleeping – if my boss weren't accommodating me, I'd really have nothing to do.

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I'm so sorry to hear this, you are having a tough time. Why do you have to have a custom made prosthesis?
I think we can all really sympathise with you, the spacer really is an instrument of torture and I couldnt even begin to wonder how painful it must be to try to play a cello with it.
I'm glad your employers are being accomodating it means alot even if you only have a few hours work. I know because mine were the same. I really looked forward to those few hours that I was able to do. My thoughts are with you. I hope you get your implant soon and that you feel the relief I did once it was back in place. Hold in there it will happen I remember feeling as you did at times. Pease keep us updated.
Lots of love Lin xx

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