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.
J'ai eu une prothèse totale du genou en 2004 en raison de dommages causés par les PVNS. En 2012, les PVNS avaient provoqué un desserrage de la prothèse, nécessitant une révision. Ni mon premier chirurgien ni personne de son cabinet n'avait jamais vu de PVNS, et j'ai été conduit à travers le tunnel de la radiothérapie, dont je regrette encore aujourd'hui de m'être soumis. Cela a brûlé mes tissus mous comme l'enfer et a créé des problèmes depuis. J'avais 65 ans et demi lorsque ma prothèse a échoué en 2002, et je viens d'avoir 79 ans hier. Je sais que j'en ai encore un peu à l'intérieur, mais peut-être qu'elle ne fera plus que causer un peu de douleur avant que je quitte cette terre. Cependant, vous êtes la première personne à avoir jamais dit qu'on ne devrait pas faire de TKG avec cette condition. Il est intéressant que mes recherches aient montré que les PVNS sont une maladie principalement associée aux Européens du Nord et de l'Ouest de race blanche, et rarement aux personnes de couleur. On m'a dit par certains que c'est une chose génétique cachée. Tout ce que je sais, pour ceux d'entre nous qui ont été « bénis » par cela comme sujet de conversation, ce n'est pas amusant. J'espère que votre succès continuera. J'ai dû faire retirer ma révision il y a environ un an à cause de staphylocoques, puis une nouvelle prothèse a été insérée quatre mois plus tard. Je suis en rééducation depuis six opérations, y compris celle pour les staphylocoques et une fracture du fémur, depuis janvier 2013, soit un total de 11 opérations depuis le début du problème.
Bonne chance dans votre parcours.
BTW.... Je suis au centre des États-Unis.
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!
Je ne sais rien du PVNS. Cela semble être son pire ennemi. Vous dites que vous avez abandonné le sport mais que vous avez essayé de courir. Pourquoi pas la natation, cela pourrait aider à renforcer vos muscles autour de la zone affectée ? Ou bien faire un entraînement sans impact dans une salle de gym. En entraînant vos muscles, vous pourriez modifier votre démarche et faciliter vos mouvements. Ce n'est qu'une suggestion, car je ne sais pas ce que vous êtes capable de faire ou non.
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
I am a 66 year old female with osteoporosis but otherwise healthy and active. I broke my distal femur while on vacation in Ireland. It was a comminuted fracture. I had surgery with a rod, two plates and 13 pins. I was in the hospital for 16 days then flew home to the states. In 19 weeks, my break is still nonunion. My surgeon has mentioned doing a revision with a bone graft. But, there’s no guarantee and if it doesn’t take, then I’ll still need to go the next step which is a Distal Femur Revision (DFR). But, this is pretty much a last step measure. I want to know if anyone else has had this happen and what your opinions are. Thank you in advance.
I am a 66 year old female with osteoporosis but otherwise healthy and active. I broke my distal femur while on vacation in Ireland. It was a comminuted fracture. I had surgery with a rod, two plates and 13 pins. I was in the hospital for 16 days then flew home to the states. In 19 weeks, my break is still nonunion. My surgeon has mentioned doing a revision with a bone graft. But, there’s no guarantee and if it doesn’t take, then I’ll still need to go the next step which is a Distal Femur Revision (DFR). But, this is pretty much a last step measure. I want to know if anyone else has had this happen and what your opinions are. Thank you in advance.