PKR Patellofemoral PKR with Ehlers Danlos hypermobility

[Mochapup]

you were going to go through a major procedure (which both are), you might just want to go ahead with the joint replacement

Thanks! Of course, I am speculating on what the possible next steps could be. Just eager to know!

 

[Jamie]

I know it’s hard to wait to get answers. If your surgeon has a patient portal, you could take a look to see if there are any surgery notes available there to find out more before your appointment next week.

 

[Jockette]

You can also ask for your surgical report. It’s amazing what we find out when we read that. In my case, I found out my surgeon did a lateral release during my PKR surgery, because my patella didn't track well during the surgery. That surprised me because I’d never had a tracking problem before. I don’t remember him ever mentioning the lateral release in any of my follow up appointments, and I didn’t ask for the report until my one year check up. So, that was a surprise and has explained the major discomfort I still have, 7 years later, in that lower, lateral area. In my case I believe something went wrong with the lateral release.

 

[Mochapup]

You can also ask for your surgical report.

Thanks! I have indeed requested it-should be finalized un a few days and they will send it.

 

[Mochapup]

Had my post-op appointment today and am super impressed with the surgeon, who openly says this is a complex case and he isn’t ready to say what he would recommend. He thought that scar tissue could be causing the patellar clunk / maltracking, but during the scope,’found that the kneecap actually “falls” off the newly resurfaced trochlear groove because the knee had been tracking laterally for so long that it was creating a new groove without any cartilage or tissue-so it falls off the edge of the new metal groove. Maybe the short video
Shows it more clearly than I can explain.

The most likely two options are a TKA or a TTO. Will do PT for three weeks and get
the surgery inflammation toned down, then we will discuss. He wants to speak with a colleague who is an expert in patellafemoral instability in the meantime.

 

[Mochapup]

Hmm-my attachment didn’t show up as a video.

 

[mendogal]

Nope, can't imbed vids, too much bandwidth.

 

[mendogal]

Oh my, the power of "wear and tear" is real...
It will be interesting to learn what factors tilt towards the eventual decision.

 

[Mochapup]

Hmm-my attachment didn’t show up as a video.

Oh my, the power of "wear and tear" is real.

Indeed! Talk about
being worked to the bone!

 

[mendogal]

Or "being in the groove"!

 

[Mochapup]

Checking in and have a question. Right now the surgeons are deciding between recommending a conversion to TKA or a distal femoral osteotomy, since my medial and lateral compartments are still in good shape. The osteotomy would be to correct the severe and painful patella lateral maltracking. The argument against TKA is the Ehlers Danlos hypermobility and the less predictable outcome of total replacement (if anything is ever predictable!).

Have typed in key terms in this board’s search but haven’t found a lot of situations that similar to mine so am hoping to invite
fresh responses.

 

[benne68]

Hi @Mochapup. I don't have any personal experience with this and, as you said, there doesn't seem to be anyone on the forum right now with a similar situation.

However, I did find some older threads by former knee members who had a distal femoral osteotomy. I'm not sure if they are relevant to your situation, so I will give you the links to their threads and let you read through for any helpful tidbits.

Revision TKR Revision RTKR due to laxity in ligament 3rd March 2015
TKR Trying to wake up
TKR Martha's Journey One Day At A Time, Phase Two
TKR Day 1 on left TKR

Hope something here is useful. Just keep in mind these are all old threads, and protocols may have changed over the past 8-9 years.

 

[NeedaThneed]

I’m similar in age, and have multiple joint pain issues, though none as disabling as my knee. Turns out I’ve just been diagnosed with rheumatoid arthritis. If we had known what I know now, TKR probably would have included resurfacing the patella. I’m having all kinds of patellofemoral pain and grew a lot of scar tissue. I’m not sure of the state of my natural kneecap cartilage (scope will confirm) ….but I think any surgical procedure and trauma is going to stress what cartilage remains in your knee.
I would want to know also if osteotomy requires you to limit the weight on leg and need to use crutches. Tough decision I’m sure!

 

[Mochapup]

think any surgical procedure and trauma is going to stress what cartilage remains in your knee.

That is an excellent point! I have had the patella and trochlear groove resurfaced so st least that is done.;) I hope
you get some pain relief too-knee pain and instability can really be disabling.

 

[Mochapup]

Hope something here is useful.

Thanks so much for taking the time to compile these!

 

[Jamie]

This is a decision that’s best made by you and your medical team. They are the ones who know your specific situation. I can tell you that most people who have an osteotomy report that the recovery is more difficult than a normal TKR. So, if you decide to go that route, be prepared for the possibility of some unexpected pain and possibly a longer time to see improvements.

Just for information, an osteotomy is not a procedure that involves the patella in any way, so it is unlikely that having that done instead of a TKR would have any impact on your cartilage.

 

[Mochapup]

Hi-have been in a bit of a holding pattern as the surgeons decide what to do. I have a hunch a conversion to TKA will be recommended. In that case, is that surgery different from a TKA on one who hasn’t already had a patellofemoral replacement?

 

[EalingGran]

In that case, is that surgery different from a TKA on one who hasn’t already had a patellofemoral replacement?

I don't know and it is something you need to discuss with your surgeon. Whether they will just leave the patellofemoral component in place or remove it.
I think it is now possible to have separate partials that effectively add up to a TKR but I don't know how common this is.
My surgeon, who is a fan of partials, said that one of the reasons for the higher revision rate is that they are easier to revise.

 

[Jamie]

It is not common to have more than one partial knee replacement. That idea was proposed by a number of surgeons years ago, but it did not end up working well for patients. In terms of recovery and functionality, a TKR for your knee should be pretty much the same as what you experienced with your partial. It would be up to the surgeon to determine whether an existing patellar button would be left in place or not.

 

[Mochapup]

Update at last! Just talked to one of the surgeons and he thinks the best way forward is to convert to a total knee replacement. They are going to have to do some fine tuning as it turns out I have 45 degrees of femoral Anteversion, plus the hyperlaxity. But I feel super encouraged by all the research they have been doing while I waited.