Revision THR Complex Revision poor outcome Ehlers Danlos

[Pumpkin]

Sorry to hear you had another dislocation. Glad the OS was able to quickly put it back in place.
Take it easy to allow those unhappy soft tissues to heal.

 

[Flowerfloosey69]

Thank you Jamie.

I'm sad to say I spent the whole day yesterday in the ER with my third dislocation!
Husband was gone and I had to pull myself on hands and knees over to the phone to call 911. Then wait in that position for 20 min in agony.

Eventually they tried to put it back in in the ER but doctor couldn't do it. They were gonna take me to ER again but all the ORs were not available.

We waited for Ortho pod to get out of surgery
and after 2 more, He came and put it back in within a few minutes.

Today I am so sore and have so much pain from all the contorscions. Next time if there is, I'm not letting the ER doctor touch me.

 

[Flowerfloosey69]

Sorry to hear you had another dislocation. Glad the OS was able to quickly put it back in place.
Take it easy to allow those unhappy soft tissues to heal.

Thank you Pumpkin! I appreciate your care and encouragement!

 

[Klassy]

Oh @Flowerfloosey69 , I only just caught up with your latest news. You poor thing, what an awful experience. I do hope you are feeling better now.

 

[Sohowarrior]

So sorry to see this. Hope you are feeling better.

 

[Pairodocs]

You poor thing. I can well imagine. And I completely agree on using an ortho instead of an ER doc. I've had that case before too, where the ER couldn't do it so they admitted me and my Ortho surgeon came in at 6 am to put it back in an OR. That was my 3nd dislocation after getting my first hip. That was when he said it would have to revised. He wouldn't let me leave until I'd been fitted with a huge hip brace which went around my waist and was strapped around my rt leg at 3 more places. It was cumbersome and I wouldn't want to wear it long term, but it did hold the hip in place until an OR was available 3 wks later for the revision. You might ask your surgeon about such a brace if you dislocate again.

I just talked with a sales person who saw my elbow and mentioned he had a hip replacement. His has lasted 19 yrs! He's got a poly crosslinked ball so maybe those are the strongest non-wearing type. But it wouldn't have done for anyone hypermobile.

 

[Flowerfloosey69]

Feeling a little less sore but having a really hard time bearing weight.. much worse than first two dislocations.
On a good note.. I got a cancellation appointment this coming Monday the 6th.

Have to go to an office a little further away but it's a small price to pay to get in 11 days earlier.

Now to finish formulating my questions and how to conduct myself at this appointment.

If anyone has any input on this, I would love your suggestions. I've already decided not to badmouth my previous surgeon. Talking about Ehlers Danlos Hypermobility and soft tissue damage from dislocations is another..

 

[Flowerfloosey69]

Thank you Pairodocs.. I was thinking I was probably the only one who has dislocated
3 times! My first surgeon gave me that brace was not adamant that I wear it( he ordered it from hospital revision discharge.)

The way my home is layed out, our bedrooms are all upstairs and I was never comfortable sitting in a chair I was only able to walk in the hall between bedrooms so it never was used. He didn't say a thing about wearing it after dislocations.. nor did he stress precautions.. it was an afterthought. My surgeon is out of town 2+ hours and I had to go by ambulance to local small hospital for reduction.

 

[Flowerfloosey69]

Today when I got out of bed, I could hardly bear weight on that side. The pain seems to be getting worse by the day.

I've done research on the dual mobility cup.. I am so hoping this new Surgeon, will offer me this. I also hope he orders a MARS MRI so the soft tissue can be evaluated.

 

[Pairodocs]

Keep at it. I'm glad you are seeing another doctor and I realize that with the increasing pain you can't keep going to doctor after doctor. So copy off information about the dual mobility cup and take it in with you next appt. Ask him/her if they have experience with it, will they consider using it. If not, would they consider doing their own research on it so you could discuss possibly using it. If not that, could they refer you do a doctor that has used it so you could find more information. You have to be persistent, even pushy, to get where you want to be. Pain-Free.

We'll have to confer on Tues. I'm having a lot of pain that I think is a tear in my left proximal (top) of the hamstring. Old damage from my particle disease I think. I was able to get an appt on Monday with my hip surgeon to see if I need surgery or maybe PRP will help. I'm hoping he will order a new MRI too, because I think it will show more damage since before my revision surgery. I may have to argue with him a bit, but he has generally been open minded so I'm hopeful.

Good luck to you too!

 

[dapplega]

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.

 

[Flowerfloosey69]

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.

Thank you for your advice. I will definitely copy off the information about DMC before going on Monday. This surgeon is top notch but does Anterior approach. I fully understand that you want a surgeon who is very experienced in whatever approach/ prosthesis he uses. He is a high volume surgeon and was the only surgeon my PT will recommend. At 71, I certainly don't want another revision so hopefully he will be able to address my issues. I am wanting him to order a MERS MRI to make sure their aren't muscle/ligaments that need to be repaired.

 

[Flowerfloosey69]

I'm in a small town in the foothills of the High Sierra.. California.. so have to drive a distance to the Bay Area for any surgeon who I would have any confidence in!

 

[Flowerfloosey69]

I have another couple questions and comments..

My surgeon never mentioned using ice, nor elevating, nor did he order compression stockings!.. as far as blood thinner post op..
he said under his breath" just take a baby aspirin everyday"!

This was my third THR and I've had two Total knees.. have things changed this much!! I also was not offered home health nurse.. having Ehlers Danlos and being 70, and having my surgeon 2 1/2 hours away.. this was horrible! I was told that " we don't do that anymore". I know that not to be true as the surgeons here in my small town still order home health nurses. Someone told me that some practices that use Medicare bundling,
Order as little as possible because it all comes out of one payment. ??

 

[Flowerfloosey69]

Keep at it. I'm glad you are seeing another doctor and I realize that with the increasing pain you can't keep going to doctor after doctor. So copy off information about the dual mobility cup and take it in with you next appt. Ask him/her if they have experience with it, will they consider using it. If not, would they consider doing their own research on it so you could discuss possibly using it. If not that, could they refer you do a doctor that has used it so you could find more information. You have to be persistent, even pushy, to get where you want to be. Pain-Free.

We'll have to confer on Tues. I'm having a lot of pain that I think is a tear in my left proximal (top) of the hamstring. Old damage from my particle disease I think. I was able to get an appt on Monday with my hip surgeon to see if I need surgery or maybe PRP will help. I'm hoping he will order a new MRI too, because I think it will show more damage since before my revision surgery. I may have to argue with him a bit, but he has generally been open minded so I'm hopeful.

Good luck to you too!

Hope you get answers tomorrow!

 

[Pumpkin]

he said under his breath" just take a baby aspirin everyday"!

Aspirin has been shown to be very effective at reducing blood clots, he should have just said it.

Order as little as possible because it all comes out of one payment. ??

The are supposed to provide medically necessary items for a patients, even with bundling.
You will have to advocate for yourself.

Good luck with your appointment tomorrow.

 

[Flowerfloosey69]

I just came out of my appointment with new Surgeon. His PA came in first and she was very caring and a great listener. She asked questions and looked at all my films.
She then spoke to the doctor before he came in.

The dr came in and looked at my films and read the previous surgeons surgical notes. He explained what the surgeon did to try to avoid
Dislocation posteriorly. Then I dislocated all three times anteriorly.

He looked at my leg length and could see that the previous surgeon did that for the same reason.

He understands Ehlers Danlos well, and told me my options.. dual mobility cup vs constrained liner. He was thinking the whole time and said he always thinks risk vs reward.

He explained the three different choices. He said everytime they take out a cup, they have to use a larger one. Since my bone isn't the greatest, he is concerned about removing it.

He is very knowledgeable and said he would rather do the most conservative thing first so that if the constrained liner didn't stop the dislocation then we would have the option of going to the less conservative option. He is going to talk to his rep about whether a dual mobility inner part could be used with the cup I have now.

We decided on revision. He said he would have all options available at the time of revision.

I am more than confident in this doctor!

 

[Flowerfloosey69]

This dr spent over an hour with me. His practice is so much different that my previous surgeon. He talks!! And Listens! He layed out all of my options. And then put them in order of what he thinks is best, taking into consideration, all that I have been thru with dislocations, and my personal Hypermobility issues. He seemed very considerate as he thought thru this process and presented what his plan would be. He even read the previous surgical notes and explained what that surgeon did and what he was thinking doing what he did. I still have a few questions that have come to mind after my appt but the office staff made it very clear how and who to contact to get my answers. They seem so available to their patients. I am more than pleased to have been given a referral by my PT to this Surgeon. I live in Northern Calif and had to drive to the Bay Area.. but so worth it!

 

[Klassy]

It’s wonderful that he listened and thought about your situation, and now has a plan. And you have someone to contact with further questions. It sounds like you have found the doctor you need. Well done for putting the effort in to get this result.

I hope it will not be tool long before the revision surgery, and you are coping and not in pain as you wait.

 

[Flowerfloosey69]

I found out the previous surgeon was overly concerned with posterior dislocation.. he went a little too far and it forced the anterior dislocations. I was thinking that I had dislocated both ways but new surgeon said all three were anterior dislocations. He was very sympathetic after looking at my films.