@sarahleemoore62 I am here as a volunteer to help, so no worries. You are very welcome here. I am sure your situation is somewhat difficult and you are searching for help. I was in that position before I had spine surgery. I had some unusual symptoms and 5 local surgeons (not at Mayo) turned me down. They all could see the spinal cord compression in my imaging, but didn't connect it to my symptoms, so for 2 years, I got nowhere just chasing surgeons and being turned down. I wrote to a neurosurgeon at Mayo and he took me as a patient and helped me. That is why I like to help patients here because I know how hard it can be to find quality care, and because of what Mayo did for me.

It was all different when I got to Mayo, and they were very efficient in figuring things out. Within a few days, all testing was complete and I was offered surgery at the first appointment. I was very impressed at the quality of my care and the results. Mayo is a special place for me. When I broke my ankle, I sent a message to my spine surgeon asking for a good orthopedic surgeon, and he had a good one contact me within an hour, and I was on the schedule for an appointment a couple days later, and scheduled for surgery 2 days after that. I didn't know healthcare could be like that. Mayo is also a very welcoming place with art everywhere and people playing pianos in the building atrium. If your insurance covers it, it is worthwhile to travel to Mayo. There are lots of hotels with full kitchens in the rooms, so you can stay in.

Covid changed things a little bit about protocols for patients and visitors, so I haven't seen my ankle surgeon's face without a mask. I know he has treated patients and had to do some bone lengthening (or straightening) for some with a circular external cage that gets screwed into a leg bone. It makes me wonder if something like that could help you, if the knee replacement implant could just stay in place and the plasticity of the bones could be altered. The more I think about that, the more it seems like it may be an answer for you. I found some links related to my surgeon.

You might be interested in reading these stories about limb lengthening that mentions my orthopedic surgeon, Dr. Andy Sems. https://www.mayoclinic.org/biographies/sems-stephen-andy-a-m-d/bio-20054747

You of course can contact Mayo and ask about this. You could ask to send your records for review to see if the Limb Regeneration Center can help you. It doesn't cost anything to do that. You would need to contact Mayo and set up a temporary account and get instructions on how to send in records and what they need. If you do become a Mayo patient, they will convert that to a patient account that will be your account for any future appointments at Mayo. I only have experience with Dr. Sems there, but I'm sure they can steer you toward a specialist in that area. There was an e-mail listed in one of the links for the Limb Clinic and I think that is one that Dr. Sems monitors.

Does this sound promising? I hope this is the answer that you need, and for me that is kind of exciting to think about!... and just for fun... here is my patient story. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Do you have any more questions? Go ahead and ask! I'm here for you!