Limb Salvage/ Total Knee Replacement Complications

lanni Member Posts: 4
edited March 2014 in Childhood Cancers #1
Hello Everyone!

I just stumbled upon this page through a tv commercial, it's a good thing I was paying attention. Well let me quickly introduce myself. My name is Leeann, I'm 20 years old, and I'm also a survivor of osteosarcoma. I was diagnosed when I was 11 and recieved chemo and underwent a limb salvage surgery. I feel extremely lucky that I have had no reaccurance of cancer, and have now been cancer-free for almost 9 years now!

However I have had numerous "mechanical" problems and a couple surgeries on my knee after the limb salvage. From the time that I was about 14-16 I was very active and not really held back by any physical limitations. However for the last 3-4 years my knee has gotten progressively worse (which really is no suprise since I've had it nearly 10 years). I had a couple surgeries to lengthen my knee, since I was only 11 at the time of diagnosis. And the last time I saw my doctor I discovered that the lengthing had actually colapsed, so for the last year+ I've been dealing with a significant difference in length between my legs and a lot of chronic pain. Right surgery is inevitable (no matter how much I ignore it, I know it will come sooner or later). I'm just curious as to talk to someone with a similar condition. I would love to hear how other limb salvages have lasted and what maintainace surgeries have been done? I really fear having another surgery because I'm afraid of getting an infection (and whenever I talk to my doctor, he is never really optimistic- must be a requirement of doctors!). I seem to be in the process of slowly accepting that chance that I may become an amputee, to prepare myself for the worse. I almost wonder if all I really need is just a second opinion.

Please contact me if you have any input on this dillema. Feel free to email me: [email protected]



  • brgndygrl
    brgndygrl Member Posts: 5
    Where did you have your surgery? I had a limb-salvage too! Mine was in SF. I have had mine almost 7 years now, and have had nearly no problems. It has never hurt or caused me any problems. Actually, two screws came loose earlier this year, but it didn't effect anything, and they just went in to remove them, and I recovered in no time. I was so nervous because after the initial surgery, I took about 7 months to walk normally, but this "tune-up" was cake. Where do you live? I had Ewings by the way.
  • lsallen
    lsallen Member Posts: 1
    Hello Leeann,

    I just recently registered to CSN and came across your message. I am also a survivor of osteosarcoma and had a total knee replacement along with chemo. I was diagnosed in 1985 at the age of 13. I am now 32 years old and have been cancer free. This year, will make 19 years although I have had several knee revision surgeries. I have had numerous "mechanical" problems as well. My first knee replacement lasted about 9 years and then I had a few revision surgeries afterwards. Each time, I've been told there is always a chance for infection for anyone having any type of surgery. I just had a knee revision surgery in September 2003. I guess that I can say I am doing okay although it can be a challenge mentally and physically. With God's help, we can make it. If you would like to email me, you may do so at [email protected] so I can give you more details.
  • JennC922
    JennC922 Member Posts: 1
    Hi Leeann,
    My name is Jennifer, and I just came upon your message. You posted it on the eight year anniversary of my osteosarcoma dignosis. I will be cancer free for eight years in August. I, too, had a knee replacemnt with about four inches of my femur as well in 1995. I was 17 at the time, so there was no concern with my still growing. I unfortunately developed a staph infection in my knee a few months later and went through two more surgeries to try to clean out the infection. I found out in 1999 that the infection had not been removed and had spread to my femur as well. So in Jan. of 2000, I had my knee removed and replace with a rod and packed with antibiotics for three months. I then I had a knee replacement and an alograft placed in my femur. I had one more surgery in May to place a plate on my femur to help secure the alograft. Before my infection set in, I was way a head of schedule with physical therapy and expected to live a pretty normal life, but all of the surgeries have left me with just basic mobility. I'm not complaining though because I still have my leg, and while I'll never be able to run, I can still walk. Just because I got an infection doesn't mean that it will happen to you. My infection set up when I had taken a chemo treatment and all of my counts dropped, and my immune system was completely shot. You have a good immune system on your side. As for the doctor, I sometimes think they take a class in medical school on how to be drab and elusive.

    Just try to keep your spirits up. I know the thought of 'will this ever end?', and unfortunately, I know that I will have to have more surgeries in the future, but I have survived cancer, so I feel pretty confident that I will survive those too. Have faith!

    On another note, I was told that I would probably never have children which devastated me, but I'm sitting here with my six month old daughter, Kiley, so that just goes to show that doctors don't know everything!

    Please take care, and feel free to e-mail me if you would like. [email protected]