Revision THR Complex Revision poor outcome Ehlers Danlos

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Flowerfloosey69

Flowerfloosey69

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Good Morning,

Today I talked to the surgery scheduler for my
Revision surgeon. I was scheduled for re-revision June 2. I've already written about this, but today I told them why I cancelled the surgery. I was calm and not angry, so I hope my words sink in and help this surgeon improve how he communicates with his patients, but he is experienced and old enough to know.

As stated earlier, I have an appt with another surgeon on June 17th. I am starting to formulate questions for this appointment. They have requested OR surgical notes,
and all exrays. In reading about this highly recommended surgeon, I see that he uses
The anterior approach. He does revisions.
Does a surgeon ever do a revision using a different approach ie anterior post a posterior revision?
 
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Flowerfloosey69

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I know now I didn't address my Ehlers Danlos Hypermobility enough. This is feeling a bit overwhelming!
 

Klassy

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That’s understandable. It’s hard enough having to cope with pain and immobility, without also having to be an expert and advocate for your own care.

I wonder if you belong to any online groups for people living with HEDS? Which might be another source of information and advice. I’m sorry if I am only stating the obvious here.
 
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Flowerfloosey69

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I received my new Surgeons packet today! Oh my! I'm impressed but trying not to be cause that's what got me in trouble last time!
 

Klassy

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Impressed but with reservations, that is wise. You are more experienced now, and will be well prepared with your questions.
 

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@Flowerfloosey69 - I made an appointment was another surgeon in my same town when planning my first revision because I was mad at my 2018 surgeon for ignoring requests for a consult when I was hospitalized for the infection that eventually led to my first revision in April 2021.

I had all kinds of good references and some tangible family connections so the surgeon was so nice and I thought he wanted to help - but ultimately he said the reason he would not consider my revision was because he only did anterior and my 2019 hip was posterior.

He suggested I make up with my surgeon and move forward because the infection was spreading and damaging more bone. I was very very disappointed. I don't know if this is the case with all surgeons at all times- but it was my experience.
 
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Flowerfloosey69

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Thank you Mary Murphy,
That is discouraging news! The new surgeon only does Anterior, but his bio says he does complex revision surgeries. My appt is June 17 so I guess I will find out. Maybe I should call the new patient coordinator? I told him my story and he never asked if I had Anterior or posterior.
 
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Flowerfloosey69

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Does anyone know if a revision surgeon can do an Anterior approach after previous Posterior hip revision?
 

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Does a surgeon ever do a revision using a different approach ie anterior post a posterior revision?
Yes, revisions using the anterior approach can be one after a posterior procedure. However, there may be certain requirements the surgeon may establish before doing this. You'll know a lot more once you talk with this new surgeon. Please don't let this worry you....if for some reason this surgeon does not want to do the revision for you, ask him for recommendations for other doctors. If that fails, let me know and I'll try to help you find surgeons who could take your case. Obviously you cannot continue like you are. We'll be here to help you!

I know now I didn't address my Ehlers Danlos Hypermobility enough. This is feeling a bit overwhelming
It is going to be very important for you to clearly detail your joint replacement experiences with your hip and knee to any doctor you talk with. Ask a lot of questions and have them explain what they will do to ensure this is not a problem for you with a new hip. Also ask how many cases like yours they've done before and were they successful. You may have other questions, so it's good to make a list of them to take to the appointment so you don't forget anything. An experienced revision surgeon should have seen cases like yours before and should know what to do. I'll be watching to see how your appointment goes in June. Sorry you have to be immobilized like this until then, but hopefully that appointment will be the beginning of your recovery from all this.
 
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Flowerfloosey69

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Soft tissue repair? I'm wondering in cases like mine..( revision with two dislocations) do orthopedic surgeons, look for soft tissue damage and plan on repairing it? Like muscle tear, iliopsoas tendon damage?
 

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Hi,
We have very similar stories if you look at my signature. I haven't been diagnosed with E-D but they have checked several times. I have always been very hypermobile. It has caused problems with my hip and knee replacements and revisions with the first line surgeon always tightening as he was use to and then needing to be revised. For my first RtTHR I dislocated 3 times (1x/month) My surgeon was great and said 3 times and it's out, meaning after 3 dislocations something else has to be done. On the totally hip website there were people who had dislocated 10 times and their surgeons wouldn't do anything. I always read up a lot before surgeries and we discussed what could be done. He repositioned the cup and put in a bigger ball with a constrained liner and that did the trick for 13 yrs, just like you. Then the pain started. I was set with the new and younger partner and he ordered xray and said he couldn't see anything so "wait and see". Then I got up from a chair and had a horrible pain in my rt buttock. I lay in bed for 4 days before I could even think about going to doctor. As I was walking across the garage to the car, I had a horrible pain just above the first spot. I insisted on seeing my original surgeon who was about to retire. Being much more experienced, he did more xrays from different angles and said "Particle disease and 2 fractures of the upper and lower rt pubis ramus." Particle disease is when the liner (constrained means has to be plastic) starts to wear and the immune system draws calcium from the bone to encapsulate it, thinking that stops any harm. But it has in effect started osteoporosis in that leg. The fractures were because of the weakened bone.

To stop here, with your liner breaking apart, I'm wondering if the same thing happened to you and it could explain your incredible pain as well complicated by your E-D

My surgeon said he couldn't do the revision because the hospital didn't have a trauma surgeon that was on call for the operating room and my pelvis could break apart and I'd bleed to death. So I did my research and found a surgeon at the Virginia Commonwealth Hospital (always look for a teaching hospital) that specialized in hip and knee revisions and VCU had trauma surgeons on call for both operating room and ER.

The original replacement was Biomet but this surgeon normally used DePuy. Since he didn't want to change the whole thing, he replaced the Biomet liner and that was it, He went in and took out 4 of the screws and packed behind them with cadaver bone to hopefully fill in the holes. The cup was firmly imbedded and 1 screw was enough to hold it in. The ring on the constrained liner was broken so he replaced that. The ER doc got it back in, we thought. It was her first one so she didn't know quite how to read the final xray. I dislocated again 6 months later in a slip (also dislocated my rt elbow by hitting it on a rock but that's my current dilemma). I went to VCU ER this time instead of the local hospital. I took my xrays from my previous dislocation with me. My surgeon's attending looked at them and called the surgeon. The ER doc had not gotten it all the way reduce. My surgeon was astounded that I'd been walking on it with no problem. The ring had kept it from going all the way in. My surgeon said I had to have a total revision and I was admitted. Hip revision on Monday and elbow surgery on Friday. At the 3 month followup my surgeon noticed my rtTKR looked a little loose. I hadn't noticed it but the prothesis was letting my knee hyperextend. That was the reason for 4 falls and dislocations. He wanted me to get the elbow fixed first for stability on the walker. I had two elbow surgeries trying to get it back in socket but it didn't work and I was told my only option was leave it like it was or a joint replacement. I fell again and dislocated the hip again so we decided to go ahead with the knee revision.. Thank heavens that did the trick and i haven't fallen since. I'm lucky in that even at 67 I heal fast with little scaring and have a high pain tolerance.

This is a long story, but I'd encourage you to ask about particle disease and could that be part of your problem. I'd also ask about constrained liners. My surgeon said if not for the particle disease, I could have gone at least another 5 yrs, but constrained liners have to have plastic liners so there nothing to be done about it. I hope this helps give some insight into your problem. With diagnosed E-D I can't imagine them not going with a constrained liner for you. Best of luck!
 

Pairodocs

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Oh and I forgot to mention that my left hip is going. I could feel that typical stab where the two bare spots of bone hit each other, but it was another 6 months before it could be seen on xray. I'm going to try and hold out for another year. That's the only big joint I haven't had replaced. With that one, I'll be interested in seeing how my surgeon feels about the new posterior surgery and any other new advances to address my hypermobility and increased age.
 
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Flowerfloosey69

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Thank you Pairodocs!
I so appreciate your long post story!! Poor you!

I am definitely going to ask questions about Particle problems! I noticed on the radiology report from last dislocation, it says "Osteopenia" the precursor to Osteoporosis!
I ask my surgeon what happened to the pieces of plastic from the liner that broke apart. There was black fluid in that area and what was left was black! Boy this brings up a lot!

I had TKR and rTKR on rt knee that is very loose.. when I stand on it, it makes noises.. it's just a matter of time! And my "good" knee is going!

My original rt THR is almost 20 yrs old and I have pain in it now too after being able to only bear 50pounds of weight on the left for 6 weeks post left revision.

In the surgical notes, I read that the routing for the bigger cup, made a hole in my pelvis. I wondered why he didn't do a bone graft?? He specializes in that!

I am also wondering why he didn't use a constrained liner and a dual mobility cup??
It makes me really upset that this didn't have to be like this!

I'm very interested in hearing about your dislocation not being fully in. My second was not able to be reduced in ER and they called in a new Ortho so took me to OR to do it. When I woke up in recovery, I had horrible side pain on the same side as reduction. They did exrays again to see if I had broken ribs but I didn't. They kept me overnight but pain didn't go away. Just in the last few days am I free from those contusions!

We live in a small community and our hospital is very questionable. I may end up going to a teaching hospital for a third opinion. Daily I feel like it is moving. All I can think about is that I will be recovering from major joint surgery the rest of my life.!
Oh and I forgot to mention that my left hip is going. I could feel that typical stab where the two bare spots of bone hit each other, but it was another 6 months before it could be seen on xray. I'm going to try and hold out for another year. That's the only big joint I haven't had replaced. With that one, I'll be interested in seeing how my surgeon feels about the new posterior surgery and any other new advances to address my hypermobility and increased age.
What is the "new posterior surgery"
 
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Flowerfloosey69

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Thank you Pairodocs!
I so appreciate your long post story!! Poor you!

I am definitely going to ask questions about Particle problems! I noticed on the radiology report from last dislocation, it says "Osteopenia" the precursor to Osteoporosis!
I ask my surgeon what happened to the pieces of plastic from the liner that broke apart. There was black fluid in that area and what was left was black! Boy this brings up a lot!

I had TKR and rTKR on rt knee that is very loose.. when I stand on it, it makes noises.. it's just a matter of time! And my "good" knee is going!

My original rt THR is almost 20 yrs old and I have pain in it now too after being able to only bear 50pounds of weight on the left for 6 weeks post left revision.

In the surgical notes, I read that the routing for the bigger cup, made a hole in my pelvis. I wondered why he didn't do a bone graft?? He specializes in that!

I am also wondering why he didn't use a constrained liner and a dual mobility cup??
It makes me really upset that this didn't have to be like this!

I'm very interested in hearing about your dislocation not being fully in. My second was not able to be reduced in ER and they called in a new Ortho so took me to OR to do it. When I woke up in recovery, I had horrible side pain on the same side as reduction. They did exrays again to see if I had broken ribs but I didn't. They kept me overnight but pain didn't go away. Just in the last few days am I free from those contusions!

We live in a small community and our hospital is very questionable. I may end up going to a teaching hospital for a third opinion. Daily I feel like it is moving. All I can think about is that I will be recovering from major joint surgery the rest of my life.!
Oh and I forgot to mention that my left hip is going. I could feel that typical stab where the two bare spots of bone hit each other, but it was another 6 months before it could be seen on xray. I'm going to try and hold out for another year. That's the only big joint I haven't had replaced. With that one, I'll be interested in seeing how my surgeon feels about the new posterior surgery and any other new advances to address my hypermobility and increased age.
What is the "new posterior surgery"
And I forgot to mention that the second dislocation was deemed an "Anterior Superior dislocation", the first was a Posterior dislocation. I've had a weird thump sensation in my gluteal area when I sit. It moves. It hasn't felt right from beginning but now since second dislocation, the pain is much worse and the feeling like it is not "in" all the way is much worse.
 
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Flowerfloosey69

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Now I've seen both reports and I guess they both were anterior superior dislocations. I also read in the surgeons notes and am puzzeled by this statement from surgical notes. "Findings: Acetabular liner was dislodged with fracturing of the rim. There was wearing and erosion of the superior part of the Acetabular component. The Acetabular component was positioned for a hip placed in anterior lateral approach with minimal anteversion. IT WAS RATHER OPEN.

Can anyone enlighten me on what this means?
 

Pairodocs

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Wow, so your cup and liner were completely broken apart. No wonder it hurt. I am puzzled by a number of things. First being as you mentioned why not put in cadaver bone? I'd definitely recommend going to a teaching hospital, not only are they going to have more experienced and up to date surgeon but there is always new equipment and technology being developed. Both equipment and tech is going to hit a bigger hospital earlier, possibly even years, before a smaller hospital.
Even so, always check out the hospital in the specialty you need. Emory always makes the top 10 list, yet their cancer department killed my best friend (IMO) by ignoring her complaints and missed a simple problem that would have given her a couple more years. As women, the problem of getting patted on the head and being told It's Ok lessens as you get older, but they still do it, especially older doctors.

You asked about the hip not being totally reduced. That actually happened twice. A constrained liner is not suppose to dislocate, there is only a small angle where the ball can come out and it's not a position that the human leg is normally in. But my first surgeon, with my agreement, put the 2nd cup in at a slight different than normal angle. This meant that it could dislocate at a different angle than most surgeons are use to. It's not suppose to be able to be reduce since the ring on the liner should not stretch to let it back in. So when ER docs tried to reduce and thought they were successful, I thought they were too. Apparently both times the ball was just poised to sit on top of the cup and my muscles were holding it in place. The pressure from standing on it slowly pushed the ball up into the cup. It took weeks the first time, but apparently happened immediately the second time. The x-rays showed it not quite in but they had me try to stand up (they were ready to catch me). I felt fine on standing so they took another x-ray and it showed the ball was completely in the cup. So just standing up was enough pressure this time (just last Dec 21). They were and still are mystified. I'm a case being followed by Biomet for my lifetime. They can't figure out what happened either.
 
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Flowerfloosey69

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The weird thing is.. it didn't hurt! It squeaked so loud, I had to stay home from embarrassment until my surgery! The surgeon in his notes, never mentioned the squeak! He said I had a lot of pain and "crunching "

That is very interesting about your dislocation. I know there must be many more of us around the world with weird outcomes.

I hope this second opinion surgeon will listen and answer all my questions. I noticed that in the release I signed before surgery, said that I understood that I could be worse after surgery. Many other things we never talked about. The surgeon promised that he would have me back in my garden!
 

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Be sure and take this report with you to your next appointment so you can get a "plain talk" explanation of what it says.
 
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Flowerfloosey69

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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 he quickly put it back in. One thing that comes out of this "incident" is, next time I'm not going to allow a ER doc to try it. I believe they do more damage to tissues than a orthopedic surgeon who is able to put it in quickly. Something to think about.

Today I feel like I've been run over by a truck.
 

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