Pvns ? You Couldn't Make This Disease Up.

Hi Simon here,
45, diagnosed 4 weeks ago, had an arthroscopic synovectomy last Monday..
Went well, up and walking.
I normally post on the facebook group 'pvns is pants'.. I guess I'm looking to find a source of information in the UK as it seems there's a lot of 'suck it and see' from the consultants....
Now that don't sit well with me.... you'd think In this day and age we'd be able to find a resource detailing cases joint effect / consultant / treatment / results.... so as we could make some informed decisions.
Non of us wants a butcher for a surgeon, or be considered as something nice to apear on their CV.
I look at It like this.... If this Isnt going to be provided for us, then we'll do It ourselves, then at least we'll know its the truth.

This is the age of the internet.
simonjulie simonjulie
41-45
2 Responses Aug 14, 2010

It is amazing in this day and age of the internet that people can not get along and or get the information or facts straight. I being the so called guy that is said to have poo pooed on you (what ever that means??) did a lot of research on the Yttrium90 radio synovectomy treatment, and most of your information your told me was far from the truth or was just plain wrong. Yes there are a few cases where some people have not had the best results, there are many more that would have the treatment again if needed. For one you told me that Yttrium90 would expose me to half of my life time exposure to Gama rays!, when Yttrium90 is a Beta emitter!. The hospital that did my radio synovectomy has done hundreds of treatments with excellent results. Maybe by the time your Doctor/Surgeon(s) treated your PVNS your knee was already near the point of being worn out as we all know PVNS will destroy an joint ? I have talked with other people that have had the Yttrium90 treatment that are still seeing great results years after the injection, SO YES I DID make an informed decision when I choose the Yttrium90 treatment over more open surgeries and the damage and risk of increased infection with open surgeries every year. So far I am pain free since my treatment, and the swelling is almost all gone, that is what the Yttrium90 treatment promised. If you want to sling mud at people maybe it should be at the lack of a cure not at each other, if you did not noticed the group talks about many different opinions of how to deal with and live a normal life if possible with pvns, I also looked up other treatments other then radiation for others to look into also. In closing your opinion is yours and mine is mine, I made my choice and am happy with mine and have many people that that agree with me both personal and medical. I only wish you the best in life, if you have an issue with me e-mail me instead of slandering me behind my back, and yes I do know who you are!

Yarp!! I've left the PVNS is Pants Group too! Why? bad advice being offered!<br />
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I had the Yttrium radiation injection treatment in 1994. It did not work!!!! but it has since completely destroyed my Knee joint since! This has been confirmed as a worthless & dangerous treatment by leading practitioners who're current on PVNS and its treatment. However, there's a certain person on the 'PVNS is Pants' page who is dangerously & recklessly recommending the Ytrium Synovectomy.<br />
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That's just nuts... and when I explained my case & situation, this guy just poo pooed me and went ahead anyway!! This guy is now an administrator and so I now want nothing to do with this group. I've pulled all my comments and will not ever go back. I don't want to be linked with such reckless and crap advice!!