I have heard some wild claims that people with PVNS have heard from their doctors. Let me just go right ahead and discredit those claims.
"1 in 1.8 million people have PVNS."
This is an outdated and regurgitated statistic that no doctor who has claimed this has been able to provide me an answer why they provided a statistic that is at least 30 years old (I was able to find this statistic originating back to the 1980s). I suspect it's closer to 1 in 250,000 but so far no "source" has been able to explain where they got the original statistic or where it even originated from. Still waiting for the WHO (World Health Organization) to chime in on that issue.
"There is a 50/50 chance PVNS will be eradicated with surgery."
Also beware if that claims is higher in the doctors or hospitals favor.
In reality only about 1 in 4 people do not have a reoccurance of PVNS after surgery from the statistics that I have access to. Also the misconception that a joint replacement will eliminate the problem. Or the unwise claim that localized PVNS won't come back after surgery. If one single PVNS cell is left behind it just grows back, and faster.
"You do (or don't) need radiation or other type of chemotherapy"
Depending on the doctor he might jump straight to suggesting this type of therapy or maybe they will be completely against it. Each doctor has his own opinion but remember, it's an opinion. Any time you introduce radiation it can cause more damage in the long run and could increase the chance of turning PVNS into real cancer. That is because radiation can cause mutations. It is a huge decision to start theses types of therapies. I personally do not suggest them if you are young, 20s or younger. I do think it should be considered unless your PVNS is just ruining your life and you are in a lot of pain. Radiation therapy has been proven to slow down the growth of PVNS in some cases but doesn't eliminate it.
"You need a full back/front synovectomy"
You may need just a keyhole arthroscopy. Every time you get surgery it's damage to your joint. If it's your first surgery, try keyhole. You also have to consider the age you are when you are diagnosed, and how quickly you needed surgery after the first symptoms of PVNS. That could be joint locking, what appears to be swelling without pain, unreasonable sprains or other injuries of ligaments attached to the affected joint. Surgery is another big decision. You have to consider at your age how many surgeries you can potentially face if they are never able to effectively remove your PVNS with surgery.
"Clinical trials have been promising"
Remember these are still clinical trials in "Western Medicine". I for one am not willing to be the lab rat and have attempted other remedies such as acupuncture, change of diet, and other supplements to see if it at least slows down the growth of my PVNS. Again, unless PVNS is ruining your life you might want to try the alternates before subjecting yourself to unknown medications.
If you have been diagnosed with PVNS. Just remember that all a doctor says is his opinion and do your research before making any decisions regarding your body.
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