MY SECOND SURGERY BONANZA

OK It's been one week...

A lot has happened, and yet at the same time, just really one thing.

On Monday morning, October 5th, I had a Anterior Knee Synovectomy. This is a procedure to remove the synovium (Joint sack) of my knee INCLUDING the PVNS tumor that resided in there. I was originally supposed to have a dual anterior and posterior synovectomy to remove both tumors, since I had two.

Prior to the day of surgery I was warned that when the doctor was in the surgery he may decide to split this up into two surgeries....meaning I would need to rehab completely from the first surgery and then go right back under the knife...meaning I would need to DOUBLE my time off from work and my time on disability.

Much to my dismay I was greeted with this scenario minutes before my surgery when he told me he had looked at my MRIs again and said it would be best to do 2 surgeries. Since I really didn't have the mental capacity to register the whole situation AND I really didn't have a choice, I went with it. He assured me that this choice was for the benefit of myself and that it will be better for me in the long run. Having both tumors removed at once can be tricky, the rehab is a nightmare and surgery is long, especially when dealing with pre-existing scar tissue like I had from the first operation.

I got my surgery gown on, some rad purple hospital booty socks, and was given a hospital made diaper/underwear situation because I was on my period, this makes for fun scenarios later! Got my IV in, which surprisingly wasn't too bad and it all went really fast after that. I noticed the nurse administering the injection, I felt relaxed but not crazy out of it. I remember being wheeled into the procedure room. I remember two huge circle lights with a blue tint, it looked like alien spaceships. I was wheeled next to another bed and asked if there were two surgeries happening at the same time (it was just the perating table i was going to be moved to) and all the nurses laughed at me. I said, darn those budget cuts....Looking back at that I'm pretty sure that "relaxed" feeling was turning into something a little stronger and a little more awesomer. They put the oxygen mask on and told me to breathe deeply, I laughed and asked if I was suppose to count backwards from ten and then woman laughed at me again and said, "If you want", the last thing I remember is asking them to take a picture of my knee while it was open....Yeah, I asked that. Before I even remember getting a response I was out. (They DID NOT take a picture, for the record.....bummer)

I woke up the same way I woke up after my first surgery in 2013...Like a baby being born and then having your baby leg chopped off at the knee.

I was crying....so hard.....so hard that the blood pressure bursts could be felt in my knee, making it hurt even worse, making me scream even louder. I begged for the nerve block and it was granted to me after the dillaudid drip was doing nothing. I don't remember seeing anything during this time because I was clinching down and squeezing my eyes shut from the pain. 

"You are going to feel some cold gel.....okay now small pinch....there ya go..."

I suddenly felt the nerve block creeping on and it was AMAZING. They basically inject fuild in your groin to "Turn off" the nerves in your leg.

After I calmed down and had the pain leave my body, I passed out. I remember being rolled to my room. It had a nice view, I'd have nurses open the window at night so I could look at the lights, it looked like tron out there.

The picture at the top of this post is of me that my boyfriend took shortly after I was moved into the room. Here is how my leg looked.....can't really tell, but the incision was huge. The calf sock is a compressor to help eliminate the occurrence of blood clots.

Day 1 went by fast, I hardly remember it actually. There was a little snafu with the IV in my hand. The machine was beeping a lot and the nurse assessed that the vein had collapsed on itself, making the pain med machine shut off. They were able to, after some digging in the arm stick me again and I was able to receive the medicine and fluid in the vein again. 

Since I had fluid pumping in me constantly I had to use the bathroom about every 2 hours. This proved difficult for two reasons. 1. I couldn't walk to the bathroom...at this point I could barely move let alone walk. SO I had to become a bed pan PRO. It's harder then it looks, trust me. 2. I was on ma lady time...YUP sorry folks it's getting real up in here. What better time for Aunt Flow to come visit?! AMIRIGHT? 

There is nothing more humiliatingly embarrassing then having a grown woman and man take care of your woman cave of wonders especially when that cave of wonders is a blood bath, literally...They could have shot promos for Scream Queens up in there. So...things got awkward a couple times, to say the least.

ANYWAYS

Day 2 came quickly. At this point I had only really slept 1-2 hours at a time. There was a cap on my IV pain medication intake and I was pretty much maxing out. Even with the nerve block, I could feel the pain creep on in the distance. My experience with the nerve block back in 2013 was complete, the whole leg was shot off AND it lasted about 4 days. This time, I still had feeling from the shin down and mid thigh up, it seamed as though it was a little weak. some time in the late morning I started getting a pain in my calf on the leg of the surgery. The doctors we concerned so they wheeled me down to get an ultra sound. while en route I noticed and increase in pain, like a HUGE increase in pain. it seemed as though the nerve block was actually wearing off. This quickly turned into a nightmare. 

It was when I was waiting for the ultrasound that I noticed my arm was sore. under the IV site there was a hard tender lump.

The nurses quickly realized that they would need to give me another IV site. Here's where things got fun...

After the ultra sound I was cleared for any blood clots, everything looked good. I was rolled back upstairs and they took my previous needle out. By this point my quad muscle is starting to spasm. My main nurse could not find a vein......she couldn't even find something she would be comfortable even trying for. The head nurse was brought in....SHE couldn't even find a vein. I even sat with hot blankets on my arms to induce them to plump up...nothing. I sat with 6 nurses gather all around my squeezing and smacking and tapping and pricking me. The following are some failed attempts, I had been stuck about 10 times by now, all with no luck...and everytime they would "fish for the vein" it would eventually hit a nerve and my body would without me trying clench up and the muscles in my knee clenched sown on the wound and I would yell and cry from the pain it was causing.

By now it's been almost an hour with no pain medicine and the nerve block slowly and steadily wearing off. I was given a Norco and was awaiting my last hope...the CCU nurse. They told me, if anybody can do this it will be her. I waited about an hour for this nurse so they had to give me a Percocet because of the wait, since the norco pretty much did nothing. She heated up my arm and dove in, at first I was able to handle it, but then it started sounding like I had turrets. FUCK......OWWWWWW.....SHITTT....FUUUUCK.... I was screaming, crying (balling) I was a baby again. just like before, everytime she went too deep it would jolt my body into a frenzy where the epicenter was by knee. My quad was spasming more. It felt like someone poured pop rocks onto the meat of my thigh and it sizzled, popped and burned. she finally gave up....Look at how alive I look in this photo #nofilter:

They called my doctor and he ordered a shot of dilauded right in the ass and in about 10 minutes I melted away and passed out. I slept for 3 hours after that, the longest I had slept since before the surgery and it was glorious.

Day 3 was just keeping pain under control. They upped my Percocet from 5 mg to 10 mg of Oxy. It was a huge help. unfortunately since I was so sedated in the morning still, I was unable to perform much physical therapy other then putting my leg close to the edge of the bed. 

Day 4 a lot happened...
My first physical therapy session I WALKED....with a walker, but still. I took about 20 slow steps out into the hall and back with no problems, it was slow, but it was steady. It felt great.

It was then that I got the go ahead to GO TO THE BATHROOM. The nurses still had to stand by while I was in transit (5 steps), and I wasn't allowed to get up without help, but it was a ginormous relief for me, I felt more human.

They then gave me some good news, if I can ace using stairs with my arm crutches, they would be able to discharge me. And you know what? I totally did.

last PT was at 2:00pm so I was expecting to be released around 3 or so. just a heads up if you are in this situation...go ahead and add about 3 hours. in my case it was 4 HOURS after this. shit takes a long time.

This is me in my civilian clothes waiting to get on up outta there. Notice the tasteful bruising on my arm pit and hand.

I then got to sit in an hour traffic to get home which was torture. Thanks LA. The mix of nausea with the cramped claustrophobic feeling of my small ass car was not a good mashup.

Which brings me to Days 5 - Now 
Here is what I have been taking daily.
Percocet (every 4 hours) - downgraded to half a pill/4hours during the day
Aspirin (blood thinner)
Stool softener (for poops)
Arthocin (herbal anti-inflammitory) - not prescribed - started day 7
Frankincense Oil (herbal anti-inflammitory) - not prescribed - started day 9
Senna pills (for poops) - not prescribed
mineral oil (for poops) - not prescribed
prune juice (for poops) - not prescribed

Spoiler alert, Opiates constipate you....like BADLY....like it took 6 days after my surgery to even make a poop. For someone who is usually regular it was rough, like having a freaking BABY in my stomach... A food and drug baby. It was pretty much the worst. 

Here is a little progress picture, not much going on here, I just have a lot of time on my hands for this level of production. ENJOY.

I am getting around on crutches only still and I am a long way from walking without aid, but I am staying optimistic. My wonderful dream man boyfriend takes care of EVERYTHING, he has been amazeballs and I am truly lucky to have him. If anyone is going through or about to go through this procedure...get yoself a buddy for the first couple of days back home, it will be the best decision ever, I assure you. You never know that you can really take for granted just being able to reach across a coffee table for a remote, so I once for like 3 hours just sat on my couch until I mustered up the strength to do anything about it.

I had my first at home PT today I got some basic exercises and strength training moves so I'm glad I have something to work on. If I can get better in a timely manner and have my next surgery before Jan1st, it will basically be free because I hit my max OOP! TOOT TOOT.

I've got a long journey ahead but I am here to get better, I am here to heal and persevere, and garsh darnnit that's what I'm gonna do!!

With love and pain meds,
Rebecca 

THE CREATIVE SMORGASBORD

It's weird going from 60 to 0.

Here I am, it's Friday. I felt like yesterday was Monday, and I am now realizing that what I thought would be the longest week of my life, just became a short blur of oatmeal, music, coffee, video games and art.

I left my apartment 3 times this week, how about that.

Sounds like a fantasy, right? Well it kinda has been. And what do I have to show for it? Well.....a shit-ton actually.

I went to Kaiser for my pre-op surgery appointment. Pre-op is basically just an office visit where they go over the procedure, tell me to stop taking vitamins and answer any questions I have about the surgery and to meet with the anesthesiology department.  It was then that we learned about me being in the hospital from Monday through Thursday, which was a bit longer then I expected. They instructed me to stop taking Ibuprofen, because it can have a blood thinning effect. Which means, to treat the pain I was told to use Tramadol.

For those who aren't aware tramadol is kinda crazy. It's an Opioid narcotic-like pain reliever. I would have trouble taking it at work because I would be so out of it. So...What better way to spend some quality time on the couch? From what I read, It affects everyone very differently, some people experience a very mean addiction and horrifying withdrawals and some feel no negative affects whatsoever. When on it, I can notice the pain has decreased significantly, but with this sensation there is a cloud of this dizzy, wide eyed and hazy feeling that comes over me. Sometimes it invigorates me and has even contributed to some interesting choices in art, but mostly, that shit just makes me dizzy and sweaty.

I ordered a butt ton of Art supplies through an Amazon locker, which is basically an electronic locker system that you can pick up packages from the inside of a 7-11, whenever you want.

I was quite pleased.

I then set out some goals for myself for the week - breaking down each day and what to achieve.
Most of it was easy to achieve, like "paint", "coffee and drawing" or "lunch"... But I also set some that required some actual work.

In light of this surgery I bought this little guy:
http://www.amazon.com/Sunny-Health-Fitness-Mini-Cycle/dp/B0016BQFV0

My new goal is to anytime I am watching TV, a movie, or playing xbox I will try to use this thing for at least the first 30 minutes, holding an ab crunch position. It doesn't take a lot of effort, but it keeps the knee joint moving without little to no impact and engages the core.

I look like an asshole doing it, but I can already feel muscles that I wouldn't be using without it. so YAAAY.

I also built a core-couch-workout. SNAZZY I KNOW. I do this once a day about 2-3 times back to back. Making sure to involve little to no impact on the knee.

SO FAR SO GOOD.

This will all be kinda worthless come Monday, but it is keeping me active and keeping me focused.

I also decided to turn off all notifications for my gmail. (I had already gotten 250+ emails from work by Tuesday) None of which required my attention, but every time I saw that little icon, it stressed me out. So, away it went. (Best decision ever). I am still checking in with my temp who is covering for me over at work, she seems to be kicking ass - so that lifts a huge weight off my shoulders.

When I sat down to use watercolors for the first time, I was sent into a fury. At one point I was working on 3 things at once.
(thanks tramadol!)
          brought to you by Tramadol

My first attempt really EVER (besides middle school art class) at watercolor paint:

The water makes the paint unreliable, it's always changing. I kinda liked this, it was like magic.

I was kinda bummed out. For some reason the tube pack I got online did not include a red or white. But this led to some interesting color choices and then I made a very watered down acrylic white to get down on.

THIS ONE I actually ended up selling, which was amazeballs. Popped it in a frame and all and shipped it out today!

I also messed around with some Planets space stuffs.

And some landscape stuffs.

I also finished another painting I had started in acrylic

Full disclosure these are ALL on sale except for the one I said I sold. Hit me up on my FB!
https://www.facebook.com/ThePaintTank

You know what else I did? I made a song.....ON AN IPAD. If that's not living the dream, I don't know what is.
https://soundcloud.com/beckyunger/fly-by-me

I did all this in 4 days....4 days without a job....4 days without makeup on....4 days without free snacks. 4 days with an introspective isolation from the world.

I have to say, I don't hate it.

In the final days to come before my Surgery I would just like to relax and take the longest shower and/or bath I can. Bubbles for days (After my first surgery it was almost 5 days before I could take an actual shower. 

The next 4-6 weeks will require an immense amount of concentration, will-power and physical pain.

I am going to try and update everyone as soon as I have my head on straight after the surgery.

Until then, much love - people of erf.

PUMP UP THE JAM - THE TALE OF MY FIRST SURGERY

Pump up the Jam, pump it up, while your feet are stompin'
And the jam is pumpin, look ahead the crowd is jumpin.

As I cranked up the volume on my computer at home, in some sort of angsty rebellion against being in my situation....I.... for some reason....could NOT STOP listening to this song.

It has nothing to do with my story, just something that stuck with me I guess.....Sometimes you gotta dance alone in your room to some 90's jams to really feel alright with the world.

It's about December 2012 by now, I am a 25 year old and recently unemployed (Because of upcoming surgery). I was living in an amazing house in Encino, CA with 3 super sweet roommates that were also awesome friends. As I research PVNS and my upcoming surgery, I try to psych myself up. Although the impending dooms-sayers clouded my thoughts with doubt and gloom, there was actually part of me that was pumped. Like, super pumped. The thought of living pain free was like some sick fantasy.

My Surgery was on the morning of January 2nd, 2013, HAPPY NEW YEAR, AMIRIGHT?! My very good friend and roommate drove me to the hospital. Not knowing really what to expect I had a strange feeling of loneliness, coupled with the satisfaction of being independent. At the time I was single, like...extremely single. We are talking 3 years into the experience of being single, single. I have to admit though, there was nothing I wanted more at the time then to know someone would be holding my hand when I woke up. Because of how specialized the treatment of for PVNS in Los Angeles under Kaiser, the hospital (and medical offices) I went to was in Baldwin Park, about 45 minutes/1 hour away from me at that time. 

Before the surgery was interesting. You wait in a room with like 8 other people FOR EVER. And because you cant eat or drink anything, you experience this weird sleepy/hungry/scary/angry feeling. Once the nurse comes out you are all cattle-herded back into the surgery prep zone. An empty room with bed and curtains which soon the people you were just with populate. They then have you take your clothes off, put them in a bag, and put on the usual, run of the mill hospital garb.

here's what I remember:
Dope socks
Nice nurses
Nerves
Iodine - lots of it
IV Drip prep (since I have small veins, they prepped one one my wrist 
   (Shit sucked)

Next I remember getting prepped for anesthesia. An awesome nurse named Andrea. She had a rad fro and was gorgeous. She had a sass about her, not something you would expect from someone about to put you down. I asked if I could administer the syringe after if was connected to my IV catheter. And I did.

She asked to count back from 10.....I made it to 6.

Here is what I remember next (And the most)

Ever think of what it would be like to be a baby coming out of the womb and taking your first breath of air, and then feel the excruciating pain of just having your leg cut off? (Note: My leg was not cut off).

I basically came back into this world kicking and screaming. In fact, the way I remember it is waking up TO my screaming and quickly realizing how much pain I was in. I was not prepared for this, and neither were the nurses. In a haze, I was greeted by reassuring nurses telling me I was ok and the operation went well. Apparently I fussed and trashed so hard that I pulled my IV out, this was even MORE pain to endure. 

Once they popped another one on me I got Morphine, lots of it. I remember still being in pain but passing out from induced sleepy time.

about 30 minutes go by....

I am screaming again. Hyperventilating.....Freaking out again. It's STILL is too much pain to handle. I had no idea. As I furiously hit the little button for more medicine over and over again, the nurse reassures me and says they cannot give me any more pain medication, I was already taking more then they usually give. 

This happened a couple times until the surgeon showed up and asked me if I wanted a nerve block. Another doctor met with me and told me the perimeters and risks, and frankly - I could have cared less. The answer was yes, give it to me, GIVE IT TO ME NOW. And they did.

It was nuts, within minutes I had no feeling from the hip down on that leg. NOTHING. it was incredible. I was chillin'.

Here is how it looked once I was transferred to my room:

Sweet drain tube huh?

I spent the next 2 days in the hospital. Keep in mind, I COULD NOT GET UP (Fall risk bracelet from the nerve block). I had to have a nurse come in and administer my bed-pan.... this shit was humiliating. And for that reason I would avoid drinking water, so that I wouldn't have to be reduced to a paralyzed baby so I could pee. It's weird being in a hospital for more then a few hours...Everytime you get to know one of the Nurses, a new one comes to switch them out. I have to say, every single one of them was amazing. I always felt secure and safe and taken care of.

Lucky for me, my pickup fell on a weekend, a Saturday I believe. That means I had 1 full day with roommate help before they all went off to work-weeks.

Flashback to be talking about living in a house. This was literally living THE DREAM. I loved it, it was huge. Okay...now I am moving at a snails pace to get anywhere, it became a constant struggle. Not to mention, the shower I was using was a tub shower (It was impossible to get in, to be able to bend my knee enough to lift over the tub rim was like enduring an entire season of the biggest loser in a 30 second sitting). Thankfully there was a standing shower I was able to use. I think it was 5 days before I could actually take a good shower.

It was sometime on Sunday I started experiencing the most crazy, ridiculous, aggressive headache I had ever felt. I was freaked out....especially all the warnings they gave me about blod clots and such. I called the Hospital, they said to take more pain medicine and wait a few hours.

It was around this time THE NERVE BLOCK STARTED WEARING OFF.

Here I was, thinking I was having an incredible time getting better and not taking pain meds, and then I realized, I hadn't really felt much at all.

OH MY GAWD. This was bad. It came back, and it came back hard. I was not prepared. THe next day by brain was splitting in half, I'm on hold with different nurses and different doctors. I finally talk to someone trying to trouble shoot with me. 

Her: Have you had any caffeine today?
Me: No I haven't, I have.......
       It dawns on me that I hadn't had caffeine since the DAY BEFORE my surgery (4 days ago)
Her: Try a cup of coffee, and next time let us know, we can give you a caffeine drip.
    
           HOLD UP......A CAFFEINE DRIP?! FOR REAL?

it is indeed real and I cannot wait to take advantage of it for my next surgery.
FANTASY LAND.

Sure enough, that did the trick. And slowy, yet surely the pain started to get managed. I was taking percoset quite regularly and playing A LOT of Xbox. Lucky for me I had a TV and a bed that were relatively close together. Getting to the bathroom was still quite hard. One of the hardest things I can recall is using the bathroom. The toilet seat seamed a million miles away and the simple act of sitting down turned into me looking like a weight lifter trying to squat while holding a VW beetle. I would use the walls to brace myself as best I could but it would always be scary.

It is hard to remember how long it was until i started walking and even then how long it took before I was exercising, but it took a good 4-6 weeks before i could even consider a normal life.

I was doing PT 2x a week and slowly tappered off when I started getting better.
Here is a little photo collage of scar progression:

The first job I picked up was a post - production assistant at Sony Studios. Not a lot of people know this, but some people have to park in a parking structure far off from most of the buildings.

It was a looooooong walk for someone who just had a synovectomy.

My first day it took me 17 minutes.

In about 2 months time, it took me 7 minutes. I t was huge. I can't thank the universe enough for putting me there when it did. I literally walked myself into rehab. And it worked!

I also had a huge pool at home at the time, THAT was a huge help as well, I would go and dip my legs in (unheated) to "Ice" my knee and sooner or later I was swimming laps. 

I can guess that about 3 months times, I was doing spectacular, even able to do yoga. I went in for my 6 months check up and they said I had done better then some of their best patients.

I will never forget when my doctor said, "you are a success story".


In my next blog I will explain how I found out it had come back and how the struggle is so very very real.



Thanks for Reading
**AIRHORNS**

HOW I FOUND OUT

I have always been a bit overweight and arthritis runs in the family, so I was no stranger to aches and pains.

The youngest I remember feeling pain in my knee was when I worked at a Movie Theater back in 2008/2009. Being on my feet for 8 plus hours a day was extremely painful. I thought I was dying at the end of every night. I got an internship in LA at an office and I began the other struggle....SITTING ALL THE TIME.

It wasn't until the summer of 2012 that I started experiencing pretty constant pain. I developed a crunching sensation and sound (very loud) anytime I went up stairs. I was working as a Post-Production Assistant and spent most my days driving around LA, lifting heavy craft service supplies, and walking all over tarnation to find office supplies and post-production gear needs. I was wearing a knee brace constantly, taking ibuprofen constantly (knee was always swollen) and was trying to swim a lot to rehab whatever was going on.

I was exiting my car on an average day sometime in September 2012. I was parked at home on a drive way that had a very steep incline. I stepped out, put weight on my foot and when I pivoted to stand I felt one of the most painful sensation I have, had right below my knee cap.

I fell to the ground and started balling immediately. It was scary. All I did was get out of my car. What the hell.

I quickly made an appointment with a doctor. I had, and currently have Kaiser. This proved difficult. The next 2 months were filled with jumping through hoops and doctors and PT and imaging, never resulting in anything real. Here's how it went down:

1. Primary doctor
        Referred me to a knee specialist

2. Knee specialist
        Got me an x-ray

3. X-Ray was normal (WTF?)
        Referred me to a Physical Therapist

4. My first session was useless, the therapist could't even teach me moves and exercises to help because of pain
         Referred me to a sports orthopedic specialist (They thought it was Arthritis)

5. Sports orthopedic specialist ordered me an MRI

I was at the Hollywood Museum of death on November 15th 2012 with my friend Joe. I was in the coffin room when I got the call.

   "Hi Rebecca, this is Doctor...., we finally got your MRI results and we are seeing a rather large, golf ball sized tumor under your knee cap, We are going to need to take it out, we believe it is something called PVNS"

I had no idea, at that point, they made me aware that there was no guarantee it was benign or not

He set me up with an appointment on November 19th with a specialist orthopedic oncologist in Baldwin Park (Only person in Kaiser IN THE ENTIRE COUNTY) that deals with this kind of thing. In the meantime, I turned to Google. I was crushed, I was scared, I was angry. Drowning in web pages of sorrow and horror stories I was enveloped with a grim and negative outlook. It is very hard to find success stories out there, it's very disheartening. The tumors are not self contained, they latch on to tissue and bone and cartilage. 

As you can see in the MRI the tumor blobs up and behind the knee cap. This little marble sized blob carved a whole in the patella. It also went into the meniscus and ate away at the front end of it. 

My next blog will go into the surgery, treatment and some of the worst and most difficult days I have ever experienced.

Thanks all!
-Rebecca

WELCOME!

HELLO ALL!

Welcome to my PVNS Experience Blog

**AIRHORNS**

I am assuming you are here because you have PVNS, but incase you are a friend or loved one who knows someone with the disease (or someone who was just diagnosed, here is a brief summary of what it is and why I am here.

Please keep in mind I am not a doctor nor a scientist. I am just a girl with PVNS in my left knee, awaiting surgery and trying to turn my anxiety about the situation into a helpful resource or center for people experiencing the same thing. Also, as an artist, I wish to share some art, along the way. As some of you may or may not have experienced, recovery from a synovectomy or just inflammation in general can take quite some time

PVNS stands for Pigmented Villonodular Synovitis, it's a mouth full I know.
To give a simple description I would say this: You got tumors in your joints, YAY. 

Causes: No one really knows, it is very rare, we are talking 1 in 1.8 MILLION. Yes, congrats you are very special. I have been told it CAN be encouraged from a trauma in the joint. My super hippie Chiropractor seems to agree.

Treatment: Surgery, Surgery, Physical Therapy, anti - inflammatory drugs, and More Surgery. reoccurrence rate is about 50/50. However I have found it very hard to find success stories out there. I know they are out there, but with anyone who fights and beats a disease they just want to move on. 

-Radiation-
There have been instances where people will receive radiation to kill the tumors. Sometimes successful, sometimes not. When I asked about this option, I was told that sometimes the radiation is more destructive to the knee then the actual tumors.

-Joint Replacement-
Joint Replacement is also sometimes offered when the destruction to the knee is so severe the joint is rendered useless and pain cannot be managed. When I asked about this option when we found my second round of tumors, I was told I was "Too Young" for a TKR. My doctor said, "The younger you get a Knee Replacement, the higher the risk you run for later amputation". This was crazy to me. Especially since I had never even thought of the A word. It was scary and it really forced me to realize that this MIGHT just be something that I'll live with for the rest of my life....which leads to the very last resort of treatments...

-Amputation-
There are cases in which the patients will opt for amputation (THIS IS RARE!) People who have it really bad and are left with little or no cartilage, after 20 even sometimes 30 surgeries and failed joint replacemnts, just get rid of the joint.

Here are some cases where people made this choice:
http://m.thetimes-tribune.com/lifestyles/woman-chooses-amputation-and-prosthetic-leg-as-path-to-pain-free-living-1.1477928

https://www.facebook.com/pages/The-Last-Adventures-of-Joes-Left-Foot/699664733412590?fref=ts


- Nutrition - 
There have also been studies that have been done for Cancer tumors in nutrition: http://www.ted.com/talks/william_li?language=en that MIGHT be beneficial to PVNS Patients.

Many other holistic and nutrition approaches can be looked into as well.

Support: There isn't an extensive amount of info out there on this disease but I feel like since my first surgery in 2013 there have a lot more resources out there. One of my favorites is this PVNS facebook group: https://www.facebook.com/groups/91851410592/
Unlike, a blog, if you are part of this group you will get pinged when someone asks a question. Everyone is superhelpful and it's good to feel a sense of community, since this disease is so rare, it's nice to be reminded, YOU ARE NOT ALONE. <3

I know a lot of other groups exist out there, I just haven't come across them yet. Please feel free to message/comment and I'd love to share with the world.

That's it for now. I am scheduled for surgery on 10/5 (second surgery, first was in 2013) and I am going to do my best to:
1) Document recovery time and stages of post-surgery care
2) Create interesting and weird art


Stay tuned!!!


-Rebecca