You don't really have a choice. If it's left, eventually your leg collapses through your hip. The pain is that bad. Crying every morning from the agony your hip is in and then throughout the day. Then people telling you it's in your head. Then people saying nothing is wrong because they can't see anything and they think you are to young to have something wrong with you. Trying to walk, with your hip popping and feeling like it will push out of socket.

Hi Krystal! I am glad they have helped, I do need to make more which I intend on doing very soon. Regarding the recurrence rate, it came back very aggressively, like within 6 months. It had completely re destroyed the hip within 18 months. This was after the first surgery where the PVNS was just curetted (cut out). When they went back in 18months later, they used cryosurgery to kill the PVNS and it has never come back. This was back in 2001 (16 years ago)

Belinda Jane that sounds like a lot to go through. I'm 19 and i've had a problem with my knee which I've had arthroscopic surgery for but the surgeon realised when he got in there that I have a significant growth of my synovitis lining. I'm waiting back for my biopsy results in the next few weeks. I've been told about pvns as a possibility and it's quite terrifying but there's not much on it that's helped me. It's great to actually listen to someone who has experienced similar things to me!

yes it was very full on, I had it in my left hip so I am not sure what its like to have PVNS in the knee. PVNS is such a rare disease, there isnt much on it at all. You should join the facebook group 'PVNS is Pants' - there are quite a few of us in there that are a great support network. I wish you the best of luck with your results. I know it must seem tough, I too was 19 when I had my hip replaced and the cryosurgery, but it really was ok. Life is tough, but it is ALWAYS tougher for someone else. Always always look for the positive in the situation and I promise you it will be ok - its what got me through, to the point that I would go through everything I have suffered all over again because of the silver linings I found along the way.

@@kirstybarr2603 I was 23 when they found it in my left hip. I've only just had it out in February which was 7 months ago. I'm now 26 years old The pain has gotten worse, a lot worse. The scar is very big. I am still waiting for the MRI scan as a base line.

@@belindajane3288 What silver lining have you found? Because I can't find any. I was told for 3 years that the pain was in my head. The surgeon wanted to carry on ignoring the problem, hoping that the break would fix itself. That was just to get an xray and arthroscopy. Now my other hip is hurting just as much as the bad one. Pain killers barely work and the doctors just want to take me off my painkillers.

I am sorry to hear of your daughter suffering with PVNS. I would head to a facebook group called "PVNS is Pants" and ask in there who specialises in your area. Ill link to the page here if that helps facebook.com/groups/91851410592/?ref=br_rs Also local oncologists can assist and point you in the right direction. It isnt a cancer as such, however as it is a giant cell tumour, oncologists tend to know more. Good luck with everything, I hope your daughter isnt in to much pain. Bel :)

thank you so very much! Your vlogs are so very helpful. Many thanks!

There are not a lot of experts unfortunately. I'm a PVNS patient and had it at 17. I'm 21 now and I've had 4 surgerys, I'm about to have my 5th and first open surgery. MSK and Moffitt are two very big hospitals with specialists in PVNS.

It is possible to have again a PVNS? Because this year August 2019 I finish my surgery of pvns in my left knee.

@@DopperMotoVlog yes it' has a 50% chance of recurring.