Non-surgical PVNS Remedies

Some doctors are telling patients to get radiation treatments post-op to "kill pvns". 
No it doesn't kill it.  In fact it can mutate it and cause it to become malignant.
It has been known to slow the growth of PVNS but it has not proven to prevent it from growing at all.
Perhaps a handful of people who have received radiation believe it kept it from returning because it was eradicated during the surgery.  I'm very weary of radiation treatments.  Not only are they very hard on your body but they hurt and make you feel awful.  Or so I've heard.  I refuse to get them.

Many people with PVNS have suggested that instead of radiation, try using Frankincense Oil.  They swear by it.  Personally I have not tried Frankincense Oil.  I would assume you could use it topically as well as ingesting it.  Some are also going toward Cannabis Oil as well but since the ability to use it has been restricted in the US for so long there are only a handful of PVNS sufferers that are allowed to try it out legally.

Currently I am working with my acupuncturist to obtain Chinese herbs to see if those will help.

Just remember, there are always healthier alternatives than such invasive if not expensive approaches to controlling or eliminating PVNS.

Exercising with PVNS

The limitations that people develop with PVNS may cause them to compensate for their time being immobile.  After a stint of swelling and pain and return to mobility they may be tempted to do more activities.  But beware.  The over exertion of your joint while it's trying to navigate with extra tissue that does not belong there can aggravate it and put you right back into immobile status. 

For those thinking of taking up hiking or running you may want to consider embracing the low imact sports.  Here is a list of activities based on what has and has not worked for me or others with PVNS that I know of (asssuming that you have it in your knee like I do):

Swimming
Bicycling
Kayaking
Yoga
Tai Chi
Pilates
Stationary aerobics such as sit ups

What I don't reccomend:
Zumba
Running
Walking long distances on a declining surface.
Row machines
Heavy weights
Squats
Yoga moves that force you to bend your knee to far
Skiing
Snowboarding
Water skiing
Step classes
Anything that provides any risk of injury (wear lots of padding).

Questionable:
Eliptical trainers (they should be safe but one time after using one my knee blew up like a balloon.)
Walking (distances up to a mile should be ok, anything farther could cause excessive strain depending on how much PVNS you have built up.)
Golfing (using a golf cart of course, but I haven't tried it for a while and the movement of the knees could cause issues).
Dancing (some dancing should be fine but swing dancing or anything where you are moving your knees is no good.

How fast does PVNS return?

The common response I've heard to the question of "how fast will PVNS return?" is that it grows faster the more you mess with it.  So injuries and surgeries seem to instigate rapid growth.  My first tumor took about 10 years to grow to the point where I could no longer bend my leg before I had my first surgery which was over a year and a half ago.  My recent MRI last month showed that there was a "lesion" that was "slightly larger than the previous exam" (pre-op).  I'm assuming that means the surgeon left some PVNS in my knee whether he knew it or not at the time.  During my follow up visit we discussed the "leave it be and see" option.  I'm reluctant to have the same surgeon perform my next surgery since he did not remove all of the PVNS the first time.  I knew something was up when he told me there would be a time limit on my surgery.  And the recovery seemed to take longer as well as noticable things like shooting pains and my knee still feeling tight when I went hiking or going down stairs.  But now that it's confirmed I feel like I'm losing my mobility much sooner and don't think I will make it another decade before I have my next surgery.  Not to mention the longer I leave it there the more potential damage it can do.  It can literally eat my knee if left alone for too long.  Another PVNS sufferer in the same state I live in says he just has an annual keyhole arthroscopy to keep him mobile.  The thought of having ongoing surgery is not palatable.  Also, the more surgery, the more damage and risk for having a full on knee replacement would be in my future.  Being 41, I need to consider how much surgery I should be taking on.  Since my next impending surgery will only be my second I will just need to continue to wait and let it do it's thing.  The Thanksgiving holiday threw me off my diet and I'm trying hard to stick to it since that is the only thing I can manage and control since I can't wave any magic wands and make it go away.  I know that everyone with PVNS has a different story.  I didn't have an injury, it doesn't feel hot to the touch, and I don't usually have pain or swelling.  So I'm still waiting until I can't walk anymore before my next surgery.  Could be next year, could be later.  That's the problem, there is no good answer to the question.  Everyone's different.  I can only hope that mine doesn't grow so fast that I will need surgery sooner than later. 

Getting Serious

After confronting the different options of if I should have surgery (and when) or just letting the PVNS be in my knee while attempting to manage it, I received a call from a dear old friend.  I told him about the PVNS being in my knee again and the horrible options I have to weigh.  He asked me a few questions and then insisted that I try the Gerson Diet.  He said someone was actually able to reverse their HIV with it.  Now I think that is a grand declaration but since this is the second time someone mentioned "juicing" to me, I think I know what I'm going to do now.

Juice.  Juice, juice, juice.  And drink lots of high antioxidant teas.  I'm sure that consuming free radicals is contributing to the growth of my PVNS so why not try just juicing.  I had already started juicing but wasn't strictly juicing before.  So, from now until the end of the year I'm going strictly juice.  This will be a challenge because there are several holiday events that I attend every year that have amazing food spreads.  And oh boy, do I love food.  I might have to cheat a little on Thanksgiving but otherwise I'm getting serious about just juicing.

The friend that called me was going on and on about a bunch of research he has done and has some great suggestions for me such as trying the Gerson Diet.  And referring me to Marcola where it talks about cutting out all processed foods (BREAD!), non-organic/grassfed beef/red meat, sugar, and bad fats.  That is easy enough.  I just have to go around telling people not to offer any of those things to me and make sure that I do not have them in my house.  I find going out to eat a lot that most American restaurants offer some kind of bread prior to the meal.  Or have things on their menus that contain bread.  So that is going to make me seriously consider where I go out to eat at from now on.  Will have to stick to ordering salad.  But for at home, I'm strictly going to juice organic fruits and vegetables.

Decisions

After getting over the initial crushing blow that was the MRI results, I spent the day on the verge of tears and wanting to eat an entire pint of ice cream.  Then I read other PVNS suffers discussing the "just leave it" option.  Sure there is the possibility that just letting it grow in my knee will cause more damage and therefore causing me to need a full on knee replacement.  At 41 I need to consider the damage that the multiple surgeries I could face could cause even more damage and cause the PVNS to grow even faster.  It took 10 years for my PVNS to make me lose the ability to walk.  Could I wait another 10?  The answer is, maybe.  I have heard of others changing their lifestyles and going for 7 years managing pain and other effects.  I know my doctor will suggest a full open back and front synovectomy.  So I'm considering the leaving it alone option.  That being said I really need to stick with my initial concept of organic foods and NO ice cream.  I figure if I face major surgery then I need to consider timing and how it will effect my life.  My surgeon claims I could be on crutches for up to 6 months recovering from the type of surgery he suggested.  Also, the nerve damage doesn't sound fun.  Being immobile will be horribly depressing and will cause me to lose significant amounts of time to work and make an income.  Also, I won't consider chemo/radiation therapies or clinical trials.  I figure if I just leave it and find alternatives such as acupuncture and eating healthy I might be able to keep it from growing out of control.

MRI Post Op

I went in for an MRI yesterday.  Luckily I had the forethought to ask them to please make sure they inject me with contrast.  Otherwise I would have had to make a second trip.  They got around to getting it approved and 45 minutes later I was done.  Since I knew what to expect I felt like an old pro and had to keep myself from falling asleep so that I wouldn't flinch.  It felt like I was only there for 10 minutes.  The first time felt like 2 hours.  Also they didn't let me listen to the radio this time, just ear plugs.  Now I just have to make the appointment to see the doctor who will review the results.  Quite honestly I don't trust him.  If he tells me I'm free and clear of PVNS I will seek a second opinion.  But if he says there is the presence of PVNS.  Well then, I need to decide on what kind of surgery and when.  And who?  Finding a good doctor is the most difficult part.

In the queue

Ok, so I completely slacked at getting acupuncture but finally went and don't really feel much different.  I just simply can't afford any ongoing treatments.  Apparently the state of Washington has a new law that says insurance companies must cover medically needed acupuncture treatments.  But of course if it is state issued insurance it doesn't count so my coverage was denied.  No fighting it unless I take an hour plus trip down to Olympia and go pout on the government steps.  Who has time for that?  Instead I went to the doctor and asked for a referral to get and MRI to see where I'm at.  That was in August.  Still waiting for the insurance company to give me the approval to get the MRI.  So I'm waiting, waiting, waiting.....


Today I finally got on the phone to call my doctor to see if I need to light a fire under someones butt so I can find out if I can so very nicely ask for an MRI.  Left a messsage.  More waiting.

I read somewhere the insurance companies have been difficult about getting an MRI.  Hopefully they won't have some goofy state rule about not allowing MRI's for medical purposes.  That was a while ago and before "Obamacare". 

By the way, the health system in America is a complete joke.  I won't go into my political rant but relocating to another country crosses my mind often.  And it is only because my PVNS can financially ruin me in the United States.  Leaving my life and family behind for the sake of not going broke is a sad potential reality for me.    Affordable Health Care in America?  Not today.

Support for PVNS

Newbies on the Facebook support page "PVNS is pants!!" will often ask about what to expect with post op pain, length of recovery time, and exercises appropriate for this disorder.
Here are some common answers and my personal advice as a conclusion:

Recovery is longer for those who have suffered from PVNS because it often does damage to other parts of the joint as well as the possibility that it is growing back along with your attempt to recover.  Also, your joints are out of alignment because you have been compensating over a period of time.  Conclusion: You need physical therapy to get back to normal sooner but if you don't get PT that's ok.

Yes,  you should exercise! 
Conclusion: Exercise should be your first priority of the day.  I cannot emphasize this enough.
Acceptable exercises for PVNS are swimming, cycling, yoga (some positions are limited), pilates, tai chi, amongst a few safer lower impact.  I don't suggest running or heavy weight lifting.

Consuming turmeric is a natural way to address swelling. 
Conclusion: Tumeric on everything!  (personal motto)

Keeping your knee raised above your heart if you have/had knee (most common) PVNS. 
Conclusion: Have a comfortable place to rest, if you need to make your bedroom your sanctuary I suggest you invest in that.  If the couch/living room is what you prefer, decorate that up.  Invest in a comfortable couch or bed and pillows, and bedding, and entertainment, side tables... you get the picture.

Slow down. 
Conclusion: Join the Slow Life Movement.  I had entered into this world by accident and once I accepted my new pace I've been implementing being slow in all sorts of aspects of life.  My favorite is to be slow to respond.  Especially when it is during a situation that makes me angry.  Road rage be gone!

Accepting what you no longer have whether it's immobility, chronic pain or swelling, or if you had an amputation. 
Conclusion:  Feel happy that you don't have it worse because guaranteed someone else does.  

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.