Fused leg knee removed due to infection

Hi @lynettegable.

What if any kinds of treatments have helped it the past. Have you had success with physical therapy?

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.

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.

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.

Hello, not sure if you are still looking for help as this was a few years ago. I have a fused right leg resulting from a gunshot wound to my knee suffered when I was 8 years old. I am currently 39 and just had my 31st anniversary of my accident. Living with a fused knee for over 3 decades has been a very difficult and interesting situation and one I’ve felt that only I knew what it was like. It is usually made worse by the fact that nobody understands what it’s like to live with the many problems associated with not being able to bend one leg. My situation is even more troubling as I am over 6’2” tall and have very long legs; to the point where I had to get my growth plates removed from my good knee to stop it from growing. While growing up it was all about adapting to my situation and not letting it affect my life. By my 30s I started having major back, hip, and left knee issue from the many years of being out of alignment and other knee compensating for the lack of a right knee. I have been looking for the same things you detailed in your post for almost 10 years! Nobody seems to understand. I am currently looking at trying a knee fusion reversal surgery (which I doubt I’m even eligible for) or amputation ( as most amputees don’t even have the issues I have in life). I just wanted you to know I feel your pain! I am in constant pain every moment of my life; even sleep doesn’t help as my body continues to have extreme muscle spasms while sleeping :/ I also feel like I have to advocate for everything in life on my own. It’s frustrating! I have done an extensive amount of research about programs and funding available for those that have a fused knee. I was able to get myself on Social Security Disability without a lawyer, have looked into vehicle modifications to be able to drive more comfortably, and am currently looking into Home buying on disability and obtaining a service dog. There is so much more I could list but just wanted to let you know there are others who have the same issue, and have been dealing with it for a long time. I am willing to help in any way I can do that you don’t feel as alone as I have trying to navigate through this medical issue that truly affects every aspect of our lives. Jason

@jasonh6 I am going through what you are right now and have so many questions! Due to an accident 9 months ago, my right leg was destroyed. My knee is essentially fused due to hetertopic ossification from the trauma and many surgeries that resulted from the accident. I've only been dealing with this for under a year. I can't imagine the decades you have gone through! My wife is my care taker and I am wondering about the process you went through to have insurance pay your wife for the full time caregiving?