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Distal Femur replacement

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Roach
Roach

Hi all, out there in the connected world. I'm just after some feedback from other peops who've had a complete resection of a knee joint. Replaced with Distal Femur prosthesis. Mine was done in May 2104 at the Royal Adelaide Hospital (Australia) and I have to say, although it has been a long road and a lot of work, the results 20 months down the track are fantastic. I have amazing range of movement, can easily walk 10km a day (with no pain) can climb stairs and do nearly everything I used to.

I no longer play sport (contact sports, or water sports or running) as, I'm primarily finished with them anyway. But running is now difficult because the mechanics of the prosthetic knee joint are different to my other joint and I can't synchronise them for a good run speed. It doesn't hurt to run, but it sure looks hilarious!

The reason I had to have the prosthetic was due to 27 years of fighting PVNS. The 30 plus synovectomies and a Yttrium injection had destroyed too much bone to be viable for a TKR. Surgeons who know about diffuse PVNS won't do a normal TKR anyway, because the disease will make the replacement fail.

0 likes, 4 replies

4 Replies

  • Oldfatguy1
    Oldfatguy1 Roach

    Posted

    I had a complete tkr in 2004 due to damage done by pvns. By 2012 the pvns had caused the prosthesis to come loose and a revision was necessary. My 1st surgeon nor anyone in his practice had ever seen pvns and I was led through the tunnel of radiation which to this day I wish I had never had done. It burned the hell out of my soft toss y e and has created problems ever since. I was 65 1/2 when mine blew up in 2002 and just turned 79 yesterday. I know I still have some left in there but maybe it won't do much more than cause a little pain before I exit earth. However; you are the 1st person who has ever made the statement regarding not doing tkr with the condition. Its interesting that my research has shown that pvns is a disease mostly associated to northern/ western european Caucasian and rarely with people of color. I've been told by some it is hidden genetic thing. All I know, for those of us who have been blessed with it as a conversation starter it ain't fun. Hope your success continues. I had to have my revision taken out about a year ago because of staph and 4 months later a new one inserted. Been rehabing from 6 surgeries including the staph and broken femur since Jan of 2013 and a total of 11 since the beginning of the problem.

    Good luck as you continue down your road.

    BTW....I'm in the center of the US.

    • Roach
      Roach Oldfatguy1

      Posted

      Hey OFG1, that's certainly not a good outcome for you so far. I do hope the disease process has been halted, and that you can finally get a functioning TKR in place asap.

      My surgeon's were very clear with me from the start in 1988 with regard to my options if PVNS couldn't be eradicated. The only options ever discussed were a joint fusion, or in the later years (from one particular Ortho) amputation. It was only with the very last MRI scan and discussion with my preferred Surgeon (who had since left private practice and taken on the RAH Tumour reconstruction position) the option of having a femur prosthesis implant was discussed. He'd waited until there was no other option before he put it on the table.

      Its usually done for people of your age-bracket when there's been bad damage. Or cancer patients, or road trauma type cases where there's massive viable bone loss in the joint. I'm actually considered a little to young for this kind of joint. But excising the whole joint removes all PVNS tissue, and any infection, completely removing the problem(s).

      So if your situation becomes so bad and unworkable that they want to give it up. there's definitely an option to be discussed first.

      Yes, this is a real b*st*rd of a disease, and it has so many ramifications along the journey, but I've had some great chats with people along the way, and indeed made some new friends too.

      You may already have spotted Adelaide (As the Australian map is relatively simple compared with that of the US) but Adelaide is in Sourth Aust, down the bottom of the mainland at top of the Fleurieu Peninsula.

      Cheers & good luck with the fight!

  • sueisobel
    sueisobel Roach

    Posted

    I know nothing about PVNS. It sounds like one's worst enemy. You say you have given up sport but have tried to run. Why not swimming, it may help build your muscles around the affected area. Or do non impact training in a gym. By training your muscles may change your gait and make movement easier. It's only a suggestion as I don't know what you are able to do/not do
    • Roach
      Roach sueisobel

      Posted

      Hey, thanks for your comments sueisobel. Hah, yeah be thankful you don't know PVNS, its a bugger. It's rare, but I think its more frequently being spotted by Orthos than in previous decades.

      With the femur implant, It's not recommended that I do activities that could result in a heavy impact upon the joint region, but anything else is fine. So walking is my frontline weapon. I'm out of work, so I do Catalogue deliveries for a kind of paid workout. After 6 months of 10-15km a day, my muscle mass, strength and endurance is better than I can recall in 15 years. Swimming was my weapon for 4 months leading up to the op, and for months post op to. I stopped because I had shoulder problems, unfortunately - Bloody frail human anatomy!😠

      The reason running isn't good is because my left knee joint is now effectively just a hinge, and the mechanical action of it is totally different to my good knee. They will never work in synchronicity again, no matter what I do. But that's not so big a deal when I know I can now walk 20km daily. Bushwalking, Camping Off-road driving, Fishing etc are way more fun. Not to forget cooking reading, photography & the world of great cool stuff I can enjoy.😁

      Thanks for your positive outlook. Where are you located?

      Cheers & Regards

      Roger

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