So, if your leg is fused from trauma like mine; I would suggest finding a Trauma Centered Primary Care Provider team. They are a lot more understanding of the situations people like myself are in because of the trauma they went through. I don’t have any providers in my area that are Trauma Centered and it’s extremely difficult to get doctors to put themselves in my shoes and understand how this affects every aspect of my life. I would also suggest finding a doctor that is older, as the young doctors I’ve met and interacted with truly have no idea what it’s like to be in pain at all, let alone every moment of your life. I’ve had better luck with older physicians myself.

If your leg is fused like @lynnetgable’s is from repeated implant complications, I would suggest dealing with the providers who have gotten her to this point. I would also suggest looking into Henry Finn MD from Chicago. He is a pioneer in complicated joint replacement procedures. He is also the doctor I am looking at performing the surgery to un fuse my leg and add one of his specially designed implants for reversing a knee fusion. He primarily deals with people who had to have their knee fused because of complications from implants/infections. I will update once I visit with him about whether he can do the same for someone like myself that had their whole knee blown out by a gunshot wound.

As for myself, I do all of my own physical therapy. I would suggest anyone who has knee issues to try aquatic therapy. Just walking around in a pool takes a lot of the weight off the body and allows my knee to get the movement and exercise it needs to continue to do all the lifting. Most providers have an option for aquatic therapy. I just use my local community center and my wife helps me get in and out of the pool.

Another place that people may not think about for information on help is an amputee group. They traditionally help anyone with a limb difference and have lots of good info and people to talk to about the option of amputating or just living with Limb Difference. I’ve personally had almost every doctor I’ve talked to suggest I get my leg amputated as most amputees don’t have the same misalignment issues of the back, hip, or ankle. It’s frustrating to look to a doctor for help and be continuously told to just cut it off if it hurts :/ after 30 years of living with a fused leg, this is seriously an option I am considering after telling myself my whole life I wouldn’t do this.

And last, if you have a fused load bearing joint and have trouble walking more than a city block; You qualify for Social Security Disability. If you have difficulty getting dressed, bathing, etc; you can look into having either a live in care giver, or have a care giver of your choice come to your home to provide services needed because of your disability. My wife is my personal care giver and gets paid through my insurance to provide me with the services I need to continue to live at home and get the services I need because of my disability. This was a game changer for our family as before this I felt like a huge burden to my wife and children who have to do almost everything for me. I spent a long time thinking I could do it all myself and fight through the pain. This is not a good way to live and often worsened my personal feelings about myself. It took a lot to ask for help to get in and out of the shower, get dressed, and even wipe after the bathroom. Things that are much more difficult to do when one leg won’t bend and it’s excruciating to bend over or twist your back.

On a last note, I would stay away from narcotics as a way to eliminate the pain. They work wonders for the pain immediately, but often led to a false sense of what my limitations are and me hurting myself trying to do things I shouldn’t. They also have extreme mental side effects. If you are already irritable and angry from the pain you feel everyday then don’t make it worse by adding narcotics to the mix. They made me a person I wasn’t and never wanted to be and personally I would stay away. The pain clinics offered by most providers are good about trying other options and working with you mentally to accept your situation and work towards getting back to living life. I would definitely try them if available.

I hope this helps and If there’s anything else I can offer for help please reach out.