Removal of Distal Femur and Knee replacement

[Matthew]

I am due to under go limb salvage surgery in 2 weeks time. I am having 6" of my distal femur removed and a custom made hinged knee replacement put in.

I have chatted to many people about the cancer but very few I have found with experience of this operation. I am more in the dark about the surgery than the cancer.

Is there anyone else here that could tell me specifically if they have had this surgery.

Would like to hear about the timetable from operation through the months that follow. Are you able to walk again without crutches or cane ? How long since you operation as I have heard hinge knee replacement are prone to loosening and really wont last very long.

What kind of activities are you able to do in life ? I am not really expecting too much. My expectation is to be able to walk a short distance without crutches of cane and with only a minimal limp. I don't expect to be able to climb stairs again or take part in any exercise.

Any thoughts/advice/experiences from you good people would be most appreciated.

[Brian]

Hi, Myself and Randy have gone through this. Take a look at our stories, I think Randy even has a picture of his x-ray in his update. Under my story, you would also have to look at my update in the members only area since I have not updated my story since my last 2 surgeries. If this is your first surgery and they are removing the tumor, it could take several hours mine was 10. My recovery during chemo was 6 to 8 months. The other surgeries I had were between 2 and 4 hours. Recovery for those were 3 and 6 months. I am able to walk with a small limp, I make it up and down stairs pretty good. I cant do many activities for prolonged periods of time w/o causing pain and swelling. For the most part you should do pretty good if you take it easy during normal daily activities. I have met several people since 1993 and I don't know anyone who can run. I hope this is helpful, feel free to email me if you have any questions.

Good luck

Brian

[Mary]

Hey Matthew, welcome aboard. It sounds like you like to do your research - I am the same way.

So, Brian, your knee replacement is hinged?

I will admit, since I had an arm tumor, I haven't done much research on the different types of knee replacements, but Matthew, you got me looking around a bit. I imagine that your knee is not the only one that requires a more constrained type of knee replacement like the hinged one. These tumors can be pretty destructive to our joints. I hope some of our people will speak up and offer their experiences. So many have managed to recover a good bit of function.

You checked low-grade osteosarcoma...do you have parosteal osteosarcoma by any chance?

Much hope,
Mary

[Brian]

I'm not a doctor but seeing where they are removing 6 " of his femur it sounds a lot like what I have. I do believe I have hardware in there that has been described as a hinge  to me by my doctor. My implant and modular femur were custom made for my leg. I don't think in our cases they just get the parts right off the shelf.

[Matthew]

Thanks for the replies.

My implant has been especially made for me. Like a made to measure suit.  My consultant says it has to be a hinged replacement because if you take away the distal femur it leaves the ligaments unable to hold the leg stable.

Would be interested to know what surgery you have had Brian since you had the implant fitted.

My consultant is confident that if all goes to plan this should be my only surgery for the time being. He is hopeful that I wont need further surgery on the implant for at least 15 years.

At the moment I will settle for that.

[Mary]

Haha, Matthew, don't go feeling TOO special with your custom-made knee. My humerus was custom-made too! They even picked a donor bone to wrap around it that was close to my size. Ewww...I got a custom picked cadaver. I hear it was a teenage boy, POOR GUY! Now his bone is stuck in my body, and judging from the pain, I don't think either is happy with the arrangement. 

I guess if the distal femur replacement has to be hinged due to ligament removal, then a bunch of people here have hinged knees. The distal femur is the most common site of osteosarcoma, and the knee replacements are pretty standard. So you've got folks like Randy, Brian, Cari, the list goes on and on! You can read 26 different distal femur stories here. Brian's story is among those, so you can read all about his surgery. Brian made it 13 years before needing a replacement surgery.  Many of the people you will read about in the distal femur stories are members of the Cafe as well. If you want to connect with one of them, you can check our member list for their name and send them a personal message.

I found that connecting with others who had my type of tumor and surgery was really helpful in the beginning, so I hope this info is helpful for you. For me, parosteal osteosarcoma was especially hard to find. It took months to find one person who had it. Things are different now, thanks to all of these awesome people!