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10 months post op for TKR

Posted , 5 users are following.

kristene001
kristene001

I'm a 47 yr old woman and 10 months ago I had TKR of my right knee. I'm also an American. I had a tumor in my knee for seven years and didn't know about it. I was miss diagnosed for 7years. Many dr's told me it was just arthritis no one ever did a MRI. Finally the pain got so bad and the tumor got so big that it was bulging out of the front and back of my knee. So I went to my orthopedic Dr. that fixed my foot after a horrible motorcycle accident when I was 16. He immediately ordered a MRI. The tumor is called pigmented vilo nodular sinovits PVNS. It was full of blood and after this monstrosity was removed it was already to late. It had cut off the blood supply to my femur and the bone was dying rapidly. My cartilage was completely gone. I was in so much pain that I wanted them to cut off my leg. Instead they sent me to a specialist orthopedic surgeon. One visit he looked at my MRI and 3 days later I had a TKR. The bone was cut out so 1\4th of my femur is gone. Along with my entire knee. This stupid tumor is so rare in America and I was one of the few who got it. Lucky me huh? I have been in therapy for 10 months. My knee is sound but the soft tissue around it is thrashed. I have 2 damaged nerves and my hamstring is severely damaged. I'm in pain management and I get horrible spasms thru my knee. Now the good news is that I can walk. Just not for too long, can't sit for too long, and can't sleep too long. To top it off I pulled a muscle in my back during therapy. This has been a long fight but I intend to win. Has anyone else ever had this happen to them or knows of someone who has?? If so how did they get thru this?? Thank you for reading my story. God bless.

2 likes, 8 replies

8 Replies

  • Oldfatguy1
    Oldfatguy1 kristene001

    Posted

    I'm in the Kansas City area and you have just joined our select club. I was 65 and 4 months from retiring when mine broke loose. Never any indication it was there until rt he bleeding started. Next Month I will have my 11th surgery (putting in a new prosthesis. The 2nd one had to be removed because of a staph infection.) Plus I had 30 rounds of radiation early on. I turned 78 in February so you can see, its a gift that keeps on giving. There arec2 types and we have the diffused version. Unfortunately, the orthopedic group of 8 that I went to had never seen or heard of a case so I was their guinea pig. I now go to a university medical center and have a young teaching professor as my surgeon and he has seen over 25 cases. In my own research I have never picked up on a case that had done as much bone damage as you describe. At the facility I use, the is an orthopedic oncologist that is doing a lot of bone tumor research and repair. She replaces big se tions of cancerous bone with tungsten rods and plates and allows the bone to regrow around the metal. If you care to, go into my email, the little envelope and send me tour email and we can further discuss this. I've bee battling it for almost 13 years now.
    • kristene001
      kristene001 Oldfatguy1

      Posted

      Well i live in Texas along with the best ortho doctors in the world. about this gift that keeps on giving i can really do without that. LOL  I believe the pain will never go away. i have small bones and my right knee looks twice as big as my left. possible the prostectic is bigger than my bones. My hamstring is still shreadded and I havent ben walking correctly so now my right hip is showing severe problems. I feel like Im never getting out of this nightmare. anything you can tell me would be great since no one around me gets any of this. sorry for all the bitchin'.  at least now i have someone to talk to about this nightmare. sorry u had it so bad. but can i say this tumor sucks!! LOL

      They have me on so much meds that if i take them like im supposed to I'd be asleep all of the time. And thats just not me. Im a person on the go all of the time. I hate sitting still. LOL  So much bone, mucle, and nerve damage due to one tumor that i didnt know existed until it started oozing out of the front and back of my knee. by then it was too late. PVNS SUCKS!! it better not come back ever.  im in so much pain on a daily basis gthat i wish they would just cut off my leg. thx for listening. like i said no one around me understands. God bless you for being there. you rock!!

    • Oldfatguy1
      Oldfatguy1 kristene001

      Posted

      I hate to mention it but since you brought it up, there are documented cases of amputation so be careful what you wish for. Don't be blindsided by what we all consider to the best possible when it comes to health care. I originally went to an ortho group of 8 with combined 100 + years and none of them had ever seen much less treated pvns. I now to to a teaching hospital where there are a ortho oncologists on staff. They are a collector type facility (regional) and my doc has seen a couple of dozen, with me being his 2nd oldest patient. You have to ask these guys how many cases of this have you treated. Sometimes it's scary. One of my boneheaded residents was a Baylor grad and did his residency at my hospital, then went back to Baylor. Not much of a reccomendation coming from here.
  • tess94652
    tess94652 kristene001

    Posted

    I am in tears when I read what you and OFG are going through - its quite humbling and makes me think how lucky i am to at least have a healthy leg and only a dodgy knee! and also that compared to you guys I really don't have much to moan about!! You are both so brave and valiant I'm sure you'll win your battles! Strength to your elbow! O and your knees! Xxx
    • kristene001
      kristene001 tess94652

      Posted

      what do you mean be dodgy knee?? Im from Texas so dodgy doesnt really explain much. Do you have PVNS too?? Hang in there you will prevail. God bless and God speed on ur journey with ur knee.
    • martinarvelo
      martinarvelo kristene001

      Posted

      Dodgy in English english means something that doesn't work well, or is not 100 percent right . . A business deal which looks suspicious would be dodgy . . .Two nations only separated by a common language, as Oscar Wilde ??? said. . . 
  • martinarvelo
    martinarvelo kristene001

    Posted

    I hope things imporove for you. I see OFG has already answered you, and he is a great contact for all of us, and especially for you who suffers the same condition as he has! I think quite a few of us TKRE's have suffered from back pain due to perhaps misusing a muscle in the back during therapy . . Hope that clears up soon, because back pain on top of everything else is very hard!  All the best for the future, and I hope that  you can get successful pain management and a good outcome eventually!  It's a slow job for all of us, but I think for you even slower.
    • kristene001
      kristene001 martinarvelo

      Posted

      Yes back pain sucks. but its because i dont walk properly due to severe muscle and nerve damage. hope ur doing better. God bless and thank you for answering me. No one around me really gets how bad this is so thank you for caring. means the world to me
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