Beware of Doctor advice when it comes to PVNS

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This is an outdated and regurgitated statistic that no doctor who has claimed this has been able to provide me an answer why they provided a statistic that is at least 30 years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.

Another reason to change my diet, no more YOLO

I like food.  I use it for comfort at times.  I also believe that hey, I can eat that strawberry shortcake because today might be the last day I live so I should go right on ahead and eat the whole shortcake myself.  Sounds good to me.  That was until I noticed I have been feeling off.  Feeling fatter than I am was a big clue that something is off.  I went to the doctor and asked him to draw blood and put that under a microscope or whatever they do with it and tell me what the heck is wrong.  The diagnosis today, Candida.  Now, I have heard that word before and I've heard people make fun of it.  Is it one of those made up diseases to let the pharmaceutical companies have their way with me.  Is it like I'm allergic to gluten or something that sounds asinine like that?  I looked it up and it makes sense.  I eat horrible things all the time.  My YOLO diet is making me sick.
(YOLO is the acronym for "You only live once" if you didn't already know that)

Last weekend I ran into a healthy friend who has a dark secret, he has HIV.  He doesn't know that I know that.  I told him about my PVNS and he exclaimed that it must be my diet that contributes to my suffering and a bunch of other shamanistic talk about what is good like a juice cleanse.  He invited me over to share in his juice experience.  So I went over and had a lovely beet, apple, basil, celery, kale and I think there was celantro and cucumber.  It was delicious.  He talked about how he looked forward to getting up in the morning and making his juice knowing it would make him feel great.  He also reminded me that we are creatures of habit and that all I need to do was to get into a routine.

Before I got the call from the doctor I was already at the store buying up vegetables to put into my own juice.  Then came the big challenge, I had a dinner meeting.  Off to a swanky restaurant where I would have probably ordered some meat dish with rice or noodles or some kind of carbohydrate.  I was also offered a drink.  I usually drink wine with a nice dinner to bring out the flavor but after reading up on why I have full blown Candida, alcohol is not in the picture.  I declined and sipped the tea instead.  I ordered a salad and it was amazing.  Even the girl sitting at the table next to me said, "What are you eating?"

However, last night after a fine morning of productive eating healthy I went full on YOLO and got dinner from Ezelles Famous Chicken complete with fries, mashed potatoes and gravy and their yummy buttery rolls.  That is going to have to be my last YOLO meal for real.  So now I'm back on to my experiment that I set out to do after my surgery over a year ago.  Today my routine was started right even though I ate pasta during lunch because that was before the Candida revelation.  Now with my new diagnosis I will be strictly juicing and eating salads and other really ultra healthy foods.  I will be cutting out sugar, refined carbs, alcohol, and kim chi.  I like kim chi but the candida diet says to stay off the probiotics.  I will have to fight the craving of sugar which is a symptom of Candida.  I can't and probably won't give up coffee.  That's an addiction I might need a 12 step program for.

PVNS and extreme ways to cure it

This guy recently has been popping up on media sources because he has chosen the difficult decision to amputate his foot in order to rid himself of PVNS in his ankle.  I like many other people with PVNS have actually considered amputation.  I will keep my leg for now.  See link below for his story.

http://www.huffingtonpost.com/2014/07/09/foot-amputation_n_5571204.html

Acupuncture Time! Almost.

After fighting and kicking the State of WA to get medical benefits I finally got to see my family doctor and asked him for a referral to get acupuncture.  Then I got a letter from the insurance company that they denied my referral.  I talked to my acupuncturist who said that in the State of Washington, we can have 12 visits paid by insurance for any reason as long as it's medical.  She is going to send in an appeal.  It shouldn't have to be so difficult.  Meanwhile my foot is doing weird things and it is getting more difficult to stand or walk for any length of time.

1 year Post Op

1 year ago today I had the surgery to supposedly rid me of that evil PVNS, but I can tell there is something lurking in my knee.  It's not crippling me.  Not yet at least.
However, yesterday I noticed in the morning that my right foot felt odd.  Like something was attached to the bottom of it.  I looked at the foot, nothing there.  I also noticed when I propped my feet up on the front part (when I sit down I do this) the foot wanted to abnormally to the right.  Later in the evening I attended a beach party wearing flat sandals and kept shaking the sand out from between my toes.  Eventually my foot had a complete spasm.  It was so painful.  I haven't had that happen since before surgery when I would go swimming, that same foot would tend to spasm out.  But only briefly.  Last night it went on a spasm marathon and was so painful I had to sit down and rub my foot until it stopped.  Took several minutes.  I have no idea if it's related to the PVNS in my right knee but it is highly suspect.  I've had several other strange crippling situations regarding my right leg so this is just another one.

First diagnosis of PVNS, let the craving of information commence.

Well, actually it has been 7 months since I was diagnosed by I'm always searching for more.  Did they discover anything?  Is usually the question I'm always asking.

I found this site when I googled "PVNS 2013"

http://www.pathologyoutlines.com/topic/jointsPVNS.html

My doctor broke up with me.

I had to see about 5 doctors before the surgeon who performed surgery on me told me what I had.  I tried to ask him how much he knew and how much experience with PVNS he had.  He only said that he had seen it before but didn't elaborate.  He sent me home with a DIY post-op list of PT exercises I could do on my own back in June.  That was the last I had seen of him until today. 

I told him I had all the signs of PVNS returning.  Tight feeling in my knee, puffy looking when it's not enflamed, snapping knee cap, shooting pains down my leg...  He said the clicking could be from the rough spot that he found on the knee cap but said nothing can really be done at this point.

He went on to explain I'm in a status of "wait and see" and that unless I have serious issues with the knee then they don't want to do anything to it and if there is a problem he will just send me to a tumor specialist at a different hospital.

Not sure how I feel about it.  He offered me no relief and no hope.  No suggestions of what I should be on the lookout for other than inability to move my knee properly or massive swelling.  That was not what I wanted to hear.  I would rather have been told that if it gets worse at a degree of an 8 from 1 to 10 then I would feel like I got good advice.  I'm probably at a 2 in that scale currently so I know that I won't likely need to see a doctor again anytime soon.  Or I can hope. 

This disease can be aggressive and while I wait, there can be major damage done to my knee by the PVNS.  "Wait and See" is not good advice even though I know that was the best advice he could give me.  I am assuming that the doctor is really not as familiar with PVNS as he indicated.   Many doctors who are not familiar with it don't like to operate on it.  So I will wait and I will see someone else when the time comes.