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.
En 2004 me sometí a una artroplastia total de rodilla (TKR) debido a daños causados por PVNS. Para 2012, los PVNS habían provocado que la prótesis se aflojara y fue necesaria una revisión. Mi primer cirujano ni nadie de su práctica había visto nunca PVNS y fui llevado a través del túnel de radiación, algo que hasta el día de hoy desearía no haber hecho. Me quemó mucho los tejidos blandos y ha creado problemas desde entonces. Tenía 65 años y medio cuando todo estalló en 2002 y ayer cumplí 79 años. Sé que aún me queda algo, pero quizás no hará mucho más que causar un poco de dolor antes de que abandone este mundo. Sin embargo, eres la primera persona que ha hecho la declaración de no realizar TKR con esta condición. Es interesante que mi investigación haya demostrado que el PVNS es una enfermedad asociada en su mayoría a caucásicos de Europa del Norte/Occidental y rara vez con personas de color. Me han dicho que algunos lo consideran un problema genético oculto. Todo lo que sé es que, para aquellos de nosotros que hemos sido bendecidos con esto como tema de conversación, no es divertido. Espero que tu éxito continúe. Tuve que retirar mi revisión hace aproximadamente un año debido a estafilococo y cuatro meses después me insertaron una nueva. He estado en rehabilitación desde seis cirugías, incluyendo el estafilococo y el fémur roto, desde enero de 2013 y un total de 11 desde el comienzo del problema.
Mucha suerte en tu camino.
PD... Estoy en el centro de EE. UU.
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!
No sé nada sobre PVNS. Suena como el peor enemigo de uno. Dices que has dejado el deporte, pero has intentado correr. ¿Por qué no nadar, podría ayudar a fortalecer los músculos alrededor de la zona afectada. O haz entrenamiento sin impacto en un gimnasio. Al entrenar los músculos pueden cambiar tu marcha y hacer que el movimiento sea más fácil. Es solo una sugerencia, ya que no sé qué puedes/no puedes hacer
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.