Revision THR Complex Revision poor outcome Ehlers Danlos

Layla

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It sounds like you found a wonderful surgeon to work with. You expressed confidence in him and the fact that he’s sympathetic to what you’ve endured certainly makes him more likable. I hope you’re able to move forward soon so you can begin healing.
All the best wishes for you! Please keep us posted.
@Flowerfloosey69
 

Pumpkin

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Happy to hear you found someone who understands Ehlers-Danlos, and is sympathetic.
Sounds like he did a thorough evaluation and has some promising ideas about how to approach your hip.
 

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I hope after 2 weeks that you are feeling back to normal. I was wondering if you found out what caused the pain on your right side at the ribs. Could it be Costochondritis (Costro)? I ran across this statement from a patient with Costro "due to the daily intense pain on the left side of my ribs under my breast bone (burning, stabbing, bruised feeling" . It sounded so much like your problem. If that is a possibility I'll tell you my tale on Costro.

We were going to the ortho on the same day, last Tuesday. Mine said I was probably right that I had proximal hamstring tendonitis. He recommended trying PRP or stem cells. I'm trying to make an appt with a rehab dr to get that done.
How did your appt work out for your 2nd opinion?
 

Zoebichon

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I'm just catching up from seeing my name tagged earlier. I'm almost 5 years in with a dual mobility cup. From my perspective they are becoming more widely used for both more physically active THR recipients and for those potentially at risk for dislocation for various reasons. That said, and I'm assuming has been echoed through this and other threads, the key to success is a high volume surgeon comfortable with their chosen prosthesis. I wouldn't ask a surgeon to go this route if they weren't already doing it. In my case, my chosen surgeon was using dual mobility for all his THR patients. I'm not sure where you are located. I'm in Seattle area if you need recommendations up here :) Best of luck to you - sounds like you are due for a turnaround.
I’m also from the Seattle area. I never discussed hardware with my OS but I read my after surgery notes online and was surprised and, I guess, pleased to see he used the duel mobility cup. I am active so maybe that’s why? He grilled me at length about my activities beforehand.
 

MsJunebug

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Hello,

So sorry to read about your repeated dislocations.I just happened to check in on the forum tonight because I’m experiencing a lot of pain from my hip all the way done to my knee. Both replacements (LTHR) and (LTKR) are hurting. I’m thinking it’s an iliotibial band issue or tendinitis.

Anyway, I was diagnosed with hEDS by a geneticist in 2016 after all the tendons and ligments in my right foot and ankle spontaneously ruptured. My LTHR was done in January 2020 and the surgeon did use a dual mobility implant due to my Ehlers-Danlos. He’s the same surgeon who did my LTKR in 2017. He seems to have a good grasp on EDS.

Although I did get relief from that awful bone on bone pain with both replacements, I’ve never been completely without pain. Seems to be some sort of inflammatory issue because I feel wonderful and totally pain-free only when I’m on high dose steroids. Unfortunately, I don’t take them very often because of the major side effects.

Wishing you good luck with your revision.

Debbie
 
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Flowerfloosey69

Flowerfloosey69

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I just received a large binder that is very well done and answers almost every question one could ask before hip replacement. It was put together with collaboration with nurses and PA's and surgeons. I have to say after receiving a personally written note after my first visit with my new surgeon, and now this binder, this guy has his act together! I no longer feel intimidated asking questions.His protocols are well thought out and practiced. My surgery will be performed in a joint replacement center( a hospital within a hospital with nurses that only work with joint replacements.. I am looking forward to getting this behind me!
 
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Flowerfloosey69

Flowerfloosey69

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Hello,

So sorry to read about your repeated dislocations.I just happened to check in on the forum tonight because I’m experiencing a lot of pain from my hip all the way done to my knee. Both replacements (LTHR) and (LTKR) are hurting. I’m thinking it’s an iliotibial band issue or tendinitis.

Anyway, I was diagnosed with hEDS by a geneticist in 2016 after all the tendons and ligments in my right foot and ankle spontaneously ruptured. My LTHR was done in January 2020 and the surgeon did use a dual mobility implant due to my Ehlers-Danlos. He’s the same surgeon who did my LTKR in 2017. He seems to have a good grasp on EDS.

Although I did get relief from that awful bone on bone pain with both replacements, I’ve never been completely without pain. Seems to be some sort of inflammatory issue because I feel wonderful and totally pain-free only when I’m on high dose steroids. Unfortunately, I don’t take them very often because of the major side effects.

Wishing you good luck with your revision.

Debbie
Debbie, I'm so sorry to hear you are still having pain! I agree about steroids!
My new surgeon is reluctant to use a dual mobility cup because of removing the cup from the last revision 7 mos ago. He said he would have to use a larger cup which means he would have to cut out the old one. My bone is not healthy enough. My preop is on the 7th so I will be able to hear his final decision on a DMC.
 
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Wow, that's a lot of dislocations, how unfortunate for you.
I have a friend that has experienced several dislocations as well and I think about that every time I try something new.
I don't think I'll ever just get out of bed and not think about having a new hip.
All my best on your upcoming surgery.
 
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Flowerfloosey69

Flowerfloosey69

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Wow, that's a lot of dislocations, how unfortunate for you.
I have a friend that has experienced several dislocations as well and I think about that every time I try something new.
I don't think I'll ever just get out of bed and not think about having a new hip.
All my best on your upcoming surgery.
Thank you myglasshalffull
 
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Flowerfloosey69

Flowerfloosey69

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Getting things set up for Re-revision with new surgeon on July 21. He spent an hour talking thru it all with me. He read previous surgical notes and explained what the previous surgeon was trying to do. My three dislocations have all been Anterior. This new surgeon is going to exchange the liner and use a constrained liner. I've read opinions both ways.. am hoping this keeps me from dislocating..
 

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Bless your ❤...hoping this new surgeon will get you all fixed up and on your way to healing !!
 
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Flowerfloosey69

Flowerfloosey69

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I'm not sure this is the right place to post this, but I'm interested in icing my hip revision as directed by my new surgeon. I can rent a cold circulating machine or purchase one or just use hip ice packs. I don't believe Medicare will pay for one. Would love to hear from anyone who uses ice in their recovery.
 
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Flowerfloosey69

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@Lexus05
I have a hinged knee, it works great, my knee is stable.
During pre op the OS said he was considering a hinged knee and another type I cannot recall. I told him I would need a hinged knee. When I saw him after surgery, he said you were right.

The question I would ask with all your revisions, is "Why didn't they give you a hinged knee sooner?"

Hinged knees work as well as other knees, and will work better than the ones you have now.
Will this be for both knees?
Wow. Have never heard of a hinged knee! This gives me hope! Would love to know how it is working for you these days? I also have ligament laxity due to Ehlers Danlos. Hope you were able to find the right surgeon.
 

Layla

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Elf1

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@Flowerfloosey69 I used gel ice packs the whole time and iced pretty much anytime I wasn't up and walking around. I became a convert for using ice for pain after my THR.
 

golfer67

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I hope all goes well for you. I also had my revision done at a Joint Replacement Center where the whole floor of the hospital was a hospital inside a hospital and the only thing they worked on was replacing joints and so far I am doing okay. No matter how it turn out you will be in better hands at the Joint Replacement Center than at a normal hospital.



Good luck

Golfer67
 

Pumpkin

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@Flowerfloosey69 .
Lexus has not been back on the Forum since January, I have moved your post to your own thread #75, where you will receive more responses.

Thanks,
Chris
 

Pumpkin

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My hinged knee replacement works like a traditional TKR, with the hinge giving the stability I knee need.
IMO with EDS a hinged knee is indicated should you need a TKR in the future.
 

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