LimpOn
new member
At age 47, I was among the first people in my region of the US to be considered a candidate for a Scandinavian Total Ankle replacement in 2002. This was part of an FDA study to ensure its safety. It worked well for about 13 years before I realized it was starting to hurt, persistently, and too much weight-bearing exercise of any type was painful and therefore, avoided. I did not want an ankle fusion with the subsequent osteoarthritis issues that brought on. I was too young. Now I feel like I’m paying the consequences for allowing myself to be a guinea pig for the medical establishment.
In 2016, I had my first post-implant surgery, which I hoped would alleviate the pain. It did, temporarily. The problem was partly the design of my implant, which included a polyethylene spacer between two metallic pieces anchored into the tibia and the talus. Over time, this spacer disintegrated into the ankle itself, causing osteocytes (bone cysts). This second surgery (2016) involved cleaning out each of the four cysts in the joint that were believed to be causing trouble, then filling them in with a compound. Now I have even more bone cysts that need to be fixed and I’m told I need another surgery to address them as soon as possible, that’s how much damage particle disease has done to my foot and ankle since the initial implant surgery. Only now, my surgeon is saying the best way to address the bone cysts is through a bone graft from my pelvis. It’s not the bone graft aspect of this that concerns me. It’s that, with particle disease (which is what triggers the cyst formation), additional surgeries are likely from this point forward, thanks to aseptic loosening of the joint and the use of polyethylene in this device.
So far, the surgeon only has advised surgery - there does not seem to be any way to address the particle disease aspect of this problem; it’s as if no one in the medical community has heard of it where I am located.
My surgeon is the same guy who fixed the grafts and also implanted the device. I am seeking out others for a second opinion but I really need to know what types of treatment options are currently available to people who need this type of surgery. He thinks he knows how to structurally fix the problem, but he has yet to mention how the particle disease will be addressed. Hoping someone in one of these forums will respond regarding potential treatments for people with particle disease.Thank you.
In 2016, I had my first post-implant surgery, which I hoped would alleviate the pain. It did, temporarily. The problem was partly the design of my implant, which included a polyethylene spacer between two metallic pieces anchored into the tibia and the talus. Over time, this spacer disintegrated into the ankle itself, causing osteocytes (bone cysts). This second surgery (2016) involved cleaning out each of the four cysts in the joint that were believed to be causing trouble, then filling them in with a compound. Now I have even more bone cysts that need to be fixed and I’m told I need another surgery to address them as soon as possible, that’s how much damage particle disease has done to my foot and ankle since the initial implant surgery. Only now, my surgeon is saying the best way to address the bone cysts is through a bone graft from my pelvis. It’s not the bone graft aspect of this that concerns me. It’s that, with particle disease (which is what triggers the cyst formation), additional surgeries are likely from this point forward, thanks to aseptic loosening of the joint and the use of polyethylene in this device.
So far, the surgeon only has advised surgery - there does not seem to be any way to address the particle disease aspect of this problem; it’s as if no one in the medical community has heard of it where I am located.
My surgeon is the same guy who fixed the grafts and also implanted the device. I am seeking out others for a second opinion but I really need to know what types of treatment options are currently available to people who need this type of surgery. He thinks he knows how to structurally fix the problem, but he has yet to mention how the particle disease will be addressed. Hoping someone in one of these forums will respond regarding potential treatments for people with particle disease.Thank you.