So sorry to hear that you have had to deal with this PVNS disease at such a young age! I really hope you are doing well since this vlog. I am 37 and need a THR on my right hip. Some doctors have told me that I have PVNS of the hip. Other doctors say I don't. It's really frustrating but hopefully I'll have an answer soon. My symtoms started at age 36 but would come and go. I was well enough to run, surf, do yoga, bike, etc.. But since last year my hip hasn't gotten better and slowly I've been robbed of those hobbies. I still lift weights and swim but not can't do flip turns even.. What type of hip did you put in? Do you have any suggestions for a pre-op patient like me? Is the PVNS more difficult to heal than a standard THR? Can we do minimally invasive procedures? I've been told that it's not possible. Thank you for taking the time and energy to share your experiences. You rock!
hey, so it's almost been a year since my surgery and I am totally back to normal. You should get a test done to see if you have PVNS because if you do the tumor will still grow and may spread to other places. As for the surgery, don't worry about it. You'll be a little uncomfortable at first but after a few days the discomfort will go away. You will have to learn how to walk again and get strength in your hip again. I started feeling normal again about a month or so after the surgery. I believe I was off my cane at around the end of January. As for the minimally invasive procedure im not sure. I would just get it over with and get the THR, it was worth it for me. The doctors said if I don't run and put a lot of pressure on my hip I won't need another replacement. Hope this helps. Good luck!
I think that is great advice. Just this afternoon one of my many doctors like you just called me back today to say he wants to do a biopsy and bone graft and that I might not need a THR. However I have nene told I have the hip of a 70 year old.. I know they told you 90. I would always get a reaction from the doc or radiologist.. Like "boy, what did you do?" Anyways I think you made the right choice to get a THR and skip the chemo or other procedure you were considering. Glad to hear that after a year it just becomes a part of you.
I am 6 years out from surgery, I was 29. The pain was intense towards the end. They did a traditional surgery(big cut) but no replacement. Mine would come and go, but when it hit I would be laid up for days. I am hoping it doesn't come back, but I was told I would need a replacement later in life.
Hi there...I am from the UK and also have PVNS...I am trying to set up a charity or some kind of fundraising....If have set up a page on Facebook called help get PVNS out there. ...Please join...and if you'd like any comments and advice would be great many thanks x
Hi, I am also having right knee PVNS 1st arthroscopy surgery done 18 moths before. But its recurring. is there any treatment for this decease without surgery ? Any details can help me
mahesh sardar hey! As far as I was aware there wasn’t. I was almost apart of a clinical trial where the med would shrink the tumor but it was pretty much cancer treatment and I was 21 at the time. That also didn’t solve the severe arthritis I had because of the pvns. I would ask your doctor though and see what the options are. Good luck!
@@TheCollegeXP Thanks for details. options given are 1)As of now open surgery to remove synonym layer and radiotherapy to burn remaining seeds. 2)Leave as it is for some time and once knee desabled go for knee replacement surgery.
