Patella Instability Solutions?
I need a Total Knee Replacement (TKA) (no cartilage left, severe tricompartmental osteoarthritis, and both meniscus torn) and a Medial Patellafemural Reconstruction (MPFL) (for my frequently dislocating and subluxing patella). Yet, I have Patella Instability and Ehlers-Danlos syndrome (EDS), ( a connective tissue disorder that means my tendons and muscles have laxity that continuously increases despite physical therapy and/or surgery to shorten them).
I have been in physical therapy since age 11 and have already had a Medial Patellafemural Reconstruction (MPFL) as a teenager, but it failed as I became an adult.
The two surgeries, TKA and MPFL have different recovery procedures that cancel each other out. TKA needs a patient up, bearing weight, and walking (perhaps with an assistance device, like a walker). But MPFL, with the tendons and/or muscle cut and sewn back together needs no weight bearing for days and/or weeks.
Is there any company working on a device that attaches a patella to the femur or tibia TKA implant inside a glide (not just a groove) so that the patella CAN'T dislocate? I realize, I may sacrifice side to side movement of the knee, but I sublux weekly and it hurts and disrupts my life. It also means my knee keeps swelling so much, doctors don't want to operate on me until the swelling is down and I can bend my knee 90-120 degrees and can bear weight on it. So I keep having to postpone my TKA. Frequent subluxations also means my patella tendons are so lax, that I may end up dislocating after my TKA, which means I am NOT a good candidate for a successful TKA.
I'm willing to have a patellaectomy, but apparently, that also comes with the same patella instability if I don't have the tendons/muscles tightened. If I do have them tightened, then I am again having two surgeries with different recovery procedures that cancel each other out.
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@pollyannaeyler Welcome to Mayo Connect, that is quite an unusual situation. Since you have been dealing with it your entire life, you probably already are aware that many orthopedic surgeons who concentrate on TKR are not necessarily familiar with Ehlers-Danlos Syndrome.
Not being a surgeon, but understanding the difference in recoveries for the two surgeries, my layman's guess is that you are going to need two separate surgeries, some months apart, to correct both issues. I realize that sounds awful, and you want to find a possible way to accomplish both.
It sounds to me like you need to seek care at a major orthopedic hospital, possibly associated with a university, or perhaps at a Mayo Clinic. (Contact http://mayocl.in/1mtmR63 )
Have you tried finding an innovative practice specializing in complex cases?
Thank you Sue!
Yes, I reached out to every Orthopedic surgeon in my county and those near me. I found just a handful, one newer surgeon has agreed to try both simultaneously, MayovClinic's website recommended finding an experienced surgeon. It took a couple of months, but I have an appointment this week with a surgeon in my home state at University of Utah. I have also recently filled out the online paperwork for an appointment with Mayo Clinic's Patella Instability Clinic in Minneapolis, but they need to retrieve my records & I have not received word if they will take my case.
I'm grateful for options & hopeful that one of these will help me for now ... but my posterity & others really need a better solution for the future.
Thank you again for your volunteer help,
Pollyanna ☺️