Revision THR Complex Revision poor outcome Ehlers Danlos

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Hello, I was part of this forum years ago and I am back with a very poor outcome of rTHR

6 mos ago my left hip replacement started to squeak very loudly all of a sudden. I was able to get in to see a highly respected Ortho surgeon three days after this started. I had no pain and my replacement was 13 yrs old.

The dr told me the liner had disintegrated and I would need a revision. 4 weeks later I had the surgery. The surgeon was 2 1/2 hours driving time away, so logistically it was not good but we made it happen.

The reason for surgery was very straightforward. He found the liner to be black and almost worn in two pieces. I had not experienced any prior pain.

My recovery was slow and by 4 weeks, I began to think I had a poor outcome. I had an odd feeling in my gluteal area.. a big thump rolling feeling when I sat. I continued to have groin pain, inner thigh pain, and pain at the very top of my thigh. When I went back to my surgeon, he said he didn't know why I had pain. I was on 50 pd only weight bearing on that side for 6 weeks. Something felt loose.

The surgery was done in late Nov and in early Feb when getting out of shower, I reached for towel on a hook and dislocated. I was taken by ambulance to the ER and they put me out to reduce it.it was a posterior dislocation. 3 weeks later, I had somewhat recovered from the trauma the dislocation had caused my body, but continued the same exact pain and feeling in my gluteal area when sitting. The doctor said to rest and come see him in 2 months, he said it would " tighten up".

Before I was scheduled to see him again, I was stepping into the shower and completely dislocated again, this time dislocation was " Anterior Superior. In the ER they tried to reduce it but couldn't and called in a Ortho surgeon and they took me into OR and anesthesitized me and reduced it. Immediately upon regaining consciousness, I had horrible pain in my side, under my rib cage.. and an area on the side felt like I had been run over. They took exrays and said my ribs were not broken, and it was a contusion that would take a long while to heal. They let me overnight in hospital because of pain. I had NOT Fallen either time.

I saw my surgeon shortly after this. He said I likely had a "malpositioned cup" and said I needed re-revision.

We made the choice to go for the surgery because the trauma had caused me to be afraid of moving. I was still having side pain and a feeling that it could dislocate any time.

I recently went to a well respected Physical Therapist. We had a long talk. My Ehlers Danlos Hypermobility had not been addressed by my surgeon. After lots of discussion, I decided that I had no confidence in my surgeon and needed a second opinion. I am relieved! Looking back, the original surgeon hardly talked to me. I had no idea if he was taking my loose connective tissues into account.

I have cancelled my surgery that was scheduled for June 2 and have an appt with new surgeon the middle of June.

My side pain seems to get better for a couple days then for some unknown reason flares up again. I can't stand more than 10 min without terrible groin pain and cannot sit more than 20 min with side pain.

Would love to have any comments on my post. Thank you for reading thru this.
 

Layla

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Hello and welcome to BoneSmart. Thanks for joining us!
Wow….I’m sorry for all you’ve been through, it’s been a long journey for you.
We’ve had some members with Ehlers Danlos and you‘ll be able to locate their threads by using the “Search” at the top of the page. Type it in and threads where its been mentioned will pop up. A BoneSmart colleague was recently diagnosed with Ehlers Danlos, I’m tagging her for you @PolarIce as you may find it interesting to share background, surgeries and recoveries.

If you leave us a brief surgery history with exact dates and hip affected, we’ll create a signature for you. I wish you all the best with your appointment next month and hope you find a good fit with this surgeon.
@Flowerfloosey69
 
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Flowerfloosey69
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Thank you Layla for your warm welcome!
Could you explain where to leave my surgery history? It's been years since I was active here!
 

Layla

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You’re welcome!
If you will please leave dates below, to the best of your ability, we’ll create your signature for you. Thanks.
Wishing you a nice weekend!
@Flowerfloosey69
 

Layla

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If you’re able to add or correct any dates on the following, we will use it as your signature.

Left Hip Revision - 2nd (date?)
Left Hip Dislocation - 2nd (closed reduction) (date?)
Left Hip Dislocation (closed reduction) February 2022
Left Hip Revision - November 2021
Left THR - 2013
 
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Flowerfloosey69
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Left Hip Replacement 2008
Left Hip Revision November 2021
(Due to failure of Acetabular liner failure)
Left Hip dislocation Feb 20, 2022 ( Posterior)
Left Hip Dislocation April 10, 2022 (Anterior Superior)
 
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Flowerfloosey69
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Left Hip Replacement 2008
Left Hip Revision November 2021
(Due to failure of Acetabular liner failure)
Left Hip dislocation Feb 20, 2022 ( Posterior)
Left Hip Dislocation April 10, 2022 (Anterior Superior)
Both closed reductions
 

Layla

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Thank you so much!
I think we have it now. Boy…was I off. :blush: Bad math on my part!
Have a good rest of the day! :) :-) (:
@Flowerfloosey69
 

PolarIce

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What a hard journey to go on! My heart goes out to you and know that this forum will always be there for support for you as you need it.

I am so glad that you had the support for a second opinion to get your hip looked at. I have read over and over that the socket of a joint can be difficult to be placed correctly in some patients, and I had the same issue. Where my story differs from yours is that my ortho surgeon knew the second he assessed me that I was hypermobile and treated my replacement a little differently because of it. He placed a double mobility joint(something to ask your second opinion about), because he hald already noticed I was hypermobile(my Ehlers Danlos diagnoses came just recently 3 months after my replacement)-BUT I was lucky to have an incredible(and I mean truly incredible) surgeon who was familiar with Ehlers Danlos already.

The recovery of our joints has to be that much more cautious and SLOW because we are at higher risk of dislocation as we don’t have that joint stability have. It is possible to have a great recovery and get back to normal. My surgeon in my case did say he had a really hard time placing the cup but it was related to me having had 2 PAOs on that particular hip.

I am now 3 months post hip replacement and the hip itself is fantastic. I just slowly started riding and being very cautious as I rebuild muscles to avoid dislocations. The one issue I am dealing with right now is lower back pain(quite severe actually, will post more about that on my thread).

What I wonder about with your story, is if the cup was placed in the wrong position in the first place, did you being active etc expedite the wear and tear on it which eventually led to you dislocating because that scup as you said above just had nothing else to really keep that joint in place. I can support your feelings towards deciding surgery as well. I think this would be the most ideal for sure. I don’t believe that the surgery itself is done any differently with those of us who have hEDS HOWEVER I will mention again that a dual mobility implant does give more mobility to the joint as you and I are patients that are more likely to go much beyond the movement range compared to a typical joint Joint replacement patient-and the idea behind it is give you a little more range grace before you push that risk to dislocate.

Please keep us posted. I hope your new surgeon is able to assist you and I would mention the dual mobility joint to him to see how he feels. At the end of the day the best is to find a surgeon who is solid in the type of joint that he offers to patient, and to not go with a surgeon who’s not experience with installing these. Big HUGS
 
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Flowerfloosey69
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Thank you for your reply! It is most helpful to hear from someone that understands!

The surgeon that did my first THR had no idea that I was hyper mobile, although he was a little shocked at my ROM. After surgery, for 13 yrs, I had absolutely no pain or issues but with the liner worn out, it was just a matter of time. That same surgeon had done a RTKR
Also and that was revised 7 years ago! Due to " Ligament laxity." At a large teaching hospital. I fell on it 12 mos after it was done and it needs a second revision but that surgeon said he wouldn't touch it again unless I got an infection.

The present surgeon, was told I have HEDS, but he really never addressed it. He told me first appt that he "knew about it" but he didn't address it further or in surgery. I got a copy of his surgical notes.

From the very beginning, it was moving. I realize that more and more each day. In certain positions, I have side pain under my ribs! That is positional.

Thank you for the information on the dual mobility cup. I have read about it.

My PT told me to stress my HEDS with this new surgeon and he had full trust that if this surgeon couldn't help me, that he would send me to someone who could.

I am barely able to stand or walk very far. I'm pretty housebound. It's very discouraging.. especially that I have to wait until June 17 for my appt.

Thank you again for caring and for your response.
 
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Flowerfloosey69
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Actually it's a typo that it was 23 years. It was only 13 years since first surgery.
 
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Flowerfloosey69
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Thank you! Do you have access to my threads from years ago? I can't even remember when I first had my other replacements
 
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Flowerfloosey69
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Would love to hear of anyone else that has had a dual mobility cup??
 

Layla

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Would love to hear of anyone else that has had a dual mobility cup??
I will tag a member that recently experienced a revision that involved dual mobility. @golfer67

If you use the ”Search” top right, typing in dual mobility, threads will pop up where it’s been mentioned. If you tap on members avatars, it should show when they’ve last been on the forum. If someone’s commentary or thread interests you and you see that they’ve been on the forum lately, consider tagging them for their opinion on a dual mobility cup. Another member that may offer you some constructive feedback is @dapplega
Hope this helps!
 

Klassy

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@Flowerfloosey69 I wish there was something useful I could say, but I can only offer my sympathy at what you have been through. It is tough that you have to wait till June 17 for your appointment, and I do so hope that this new surgeon will be the answer for you. In the meantime you are doing the right thing in gathering all the information you can.
 
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Flowerfloosey69
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I asked for all my previous posts from when I first joined Bone smart. I was
Surprized a little but basically found similar issues. I've been putting up with pain for so long I guess I've just lived with it. I do see many simlarities. It all boils down to very loose connective tissue.
 

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