@erikas I wrote a very long answer to your question, but then I thought about it more and didn’t post it because I realized I could not possibly have done anything differently. I think that I did all that I could.

Unfortunately, I felt like I was really at the mercy of the surgeon, and he is the kind of doctor that does one knee surgery after another. If you don’t fit into his cookie cutter mold as a patient he doesn’t care or respond. I tried to get appointments with other orthopedists recommended by my PCP, but none would see me because I had already had a TKA by my surgeon. (That made me really want to give up, but I didn’t. I think my anger fueled my will to keep going.)

On all the nights that I couldn’t sleep due to pain I researched everything I could find and understand about my symptoms. I tried to find the answer myself because the surgeon was done with me. I tried alternate therapies like acupuncture and other manual modalities done by doctors at the same university as the surgeon. One of them contacted my surgeon several
times about my case, and the surgeon wouldn’t even respond to him. That doctor finally sent me to pain management where I am now, getting physical therapy from a PT who understands the problem and treats it appropriately.

During this ongoing journey I discovered that I am not alone. There are so many people out there “like us,” and I take comfort in that. There is not yet an end in sight for me, but I am not ruined. I learned to listen to myself and to not give my power away.

So I would tell people in my situation:

1. Doctors are not gods.
2. You are not a victim.
3. Educate yourself as much as you can.
4. Advocate for yourself. If you reach one dead end, keep searching for alternate ways. Think outside the box.
5. Find and reach out to others who are in similar situations.
6. Follow your gut. (When my original PT pushed me to the breaking point and caused more damage, I should have sought out a different one. I didn’t listen to myself.)
7. Find one medical professional who is willing to be in your corner and help advocate for you or at least journey with you. My PCP has not given up on me, so I can’t give up on me.
8. Be mindful of your thoughts. I catastrophized and, especially in the middle of sleepless nights, I pictured my pain never ending and my life being over because of it. Doing that just caused more suffering.
9. Take things one step at a time (pun intended!) Don’t get ahead of yourself.
10. Be gentle with yourself. This is not your fault. You are not a lost cause. You are not your pain.

I hope this helps someone.