Hi, @sarastafford and welcome to Connect. Sara, I am so sorry for what you have gone through. It is definitely the worst nightmare I have heard of regarding a TKR. I hope you manage to find some doctor, somewhere who can help you. I can imagine how despondent you must be. Reading your tale even makes me feel helpless in not being able to offer any advice, just concern and hope for the future.
I think you need to get an opinion at the top medical center that you are able to go to. US NEWS just published their annual report on the best hospitals and departments. I would find the hospitals that have the best ortho departments and find a way to go to one of them. You don't mention where you are from, but I hope there is something reasonably close to you. I am very fortunate in that regard, I have Boston 55 miles down the road and go there for many things. Speaking of which, MGH rated second in best hospitals in the country, second to Mayo! Plus I think MGH had the most areas of excellence. Actually though, I don't think MGH is the best place to go to ortho.
Try to stay positive, there has to be some help out there.
I really do wish I could help more. Pain for that long is so destructive to a person, emotionally and every other way.
JK