MRI Nightmare

I had to go to the regular hospital for my MRI rather than the clinic on the other side of town.  University of Washington's medical program is spread out across the city of Seattle.  I could be anywhere from the Stadium to the best ER hospital on the west coast, Harborview.  But this time I was sent to the UW hospital that is just off campus from the University.  UW Medical is a teaching hospital so you don't just see one or two people, everyone is on a team.  So lots of people in your room is to be expected.

I ended up parking on the Southwest side of the building which is more of a place for staff parking but they also have ample handicap parking there too so I went with that parking garage.  I parked close to the back entrance which is literally the basement.  The first hall is a long corridor with their typical "they saved my life" giant posters of people with stories of what the Medical staff has done for them with benches lining the other side.  A strange placement for seating which is the introduction to even stranger places.  The next set of doors releases you into a maze of hallways.  Everything from defunct equipment to doors with hazard warnings such as "high levels of radiation".  Creepy.  I finally find my way to the elevators to take me upstairs.  I have enough time for the cafeteria but I find it confusing and go to check in.

The woman behind the desk is chattering away with co-workers and finally has me approach the desk at 12:48pm.  She starts, "You are early, your appointment doesn't start until 1:30.  And it looks like  there is no insurance information so after your appointment you should check in with admitting and have them enter it."   I tell her, "I will just go now since I still have plenty of time before my scheduled appointment."  She says, "ok".  And off I go to another floor where admitting is and give them my info.  Now I do have a lot of time so I go to the gift shop and get some coffee to keep me alert until my appointment time.

I arrive back at the waiting room full of people and find a seat.  I hear the check in staff giggling away and hear the woman who I spoke with say, "I'm just waiting for my second interview and I'm out of here!"  She went on to brag how she was on the hunt for another job which could make her life better and runs down of list of down sides to working at the UW Medical center.  Then more giggling and chattering.  I then realize it's 1:43 and I haven't been brought back for my MRI yet.  I get up and go over to her asking what happened.  "Oh I can check you in right now" she says.  "Thanks" I reply.  I go back and sit down and immediately wonder, why did she just now say she checked me in when I checked in nearly an hour earlier.  I feel the frustration starting to set in and I go back over to her desk to reprimand her for not telling me to check in again when I came back.  She didn't seem sorry for her complete lack of communication as she clearly wasn't interested in doing her job any longer.  I told her I needed to know how much longer I was going to have to wait.  By then the tech was right there to take me back and I was so relieved.

They asked if they could test something new out on me.  I said, "Sure!"
They wanted to monitor my heart rate as I had my MRI.  I thought that was pretty funny considering that I have been trained to relax my body to near sleep in any circumstance where I can relax my whole body.  Laying in an MRI machine is just that.  I chose to listen to jazz while I tried to not completely pass out since I tend to flinch when falling asleep.  Only had one little wiggle between images so I made it through it ok.  One of the staff members announced, "I was totally grooving out to your jazz, good choice".

Coming out of the hospital was the true challenge.  How to get through the maze?  Naturally I have a keen ability to determine direction and can usually puzzle myself out of things quite easy but the way the halls are arranged in the basement of the hospital I was not so lucky.  I passed doors that said, "do not enter" and "do not knock".  More scary warnings of disturbing things behind closed doors.  I asked two people I came across to point me in the right direction.  At one point I realized I wasn't even on the right floor!  I still had to go down one.  But I finally made it out.  I felt like I had escaped a terrible place when I finally opened the door to the sunlight flooding in.

Symptoms of PVNS

Personally I noticed my PVNS as a bump on my right knee, just under my knee cap.  It was on the left side of the front of my knee.  It never bothered me as far as pain goes but I knew it was odd.  None of the 7 doctors I showed it to seemed to know what it was.  They just shrugged and said that if it didn't bother me to just leave it.  Then it started to cause problems.  I had a blood vessel burst in the calf of my right leg.  Then my knee would swell after doing certain activities while taking several weeks to get the swelling to go down.  Then I started pulling muscles for no reason in my right leg.  Finally the bump started catching my knee so that it became difficult to sit or go down stairs.  I then went to my doctor who referred me to the surgeon who finally diagnosed me 4 years ago with PVNS.  Since then I have had 2 arthroscopic removals of my PVNS and now am working on scheduling an MRI because I'm getting that catching and popping of the knee again which usually means something is in there that shouldn't be and it's not scar tissue.

I asked others with PVNS what their first symptoms were and here are the symptoms people said they had:

Pain  - Dull ongoing pain or sharp shooting pains.  And everything in between.
Swelling - Extreme swelling, usually for no apparent reason and seems to take a while to settle.
Popping/Cracking - Sometimes it will also make a grinding sound.
Unstable - Many have said the lesions will cause their joint to dislocate itself over and over.
Burning/Hot - A sensation many have said that when they touch the effected joint it feels hot to the touch.
Limp - Some limps are caused by the instability and some caused by stiffness.  Many reasons to limp.
Lump - Like me, some have notice a sizable lump.
Repetitive Injury - Such as spraining an ankle over and over.
Bakers Cyst - This is a common diagnosis with PVNS.
Dogs - Some peoples pets have been able to detect PVNS in their owners.
Heavy - A heavy feeling in a knee, leg, or foot.
Tight -  It could feel like a vice or someone grabbing your affected joint, especially while in motion.
Pain in other places - If your knee has PVNS you might have strange pains in the foot.
Spasms - Will they ever stop?
Numbness - This could be because the PVNS has pressed against a nerve.


If you have had other symptoms I would very much like to hear from you.  Please leave a comment if you have ever experienced any other symptoms of PVNS.

CBD & THC for PVNS

About a month ago I went to the cannabis shop, because it's completely legal where I live.  And I had been told by several people, medically trained and not, to try putting CBD oil on my PVNS topically.  So I got a cream made by Bodhi Essentials that claims to have "High CBD" although it doesn't give the measurement of CBD.  And whatever, I'm using it diligently every night.  In the last 30 days I have continued applying it.  Last night I added some frankincense into the jar because I have heard others having their PVNS tumors shrink with the use of frankincense oil so why not?  I still have symptoms but recently saw my regular doctor and naturopath and told them I do not plan to have another MRI until I absolutely need to. Which I hope is not for a year.  If the PVNS is back I don't need to know that until I'm going to have another surgery so for now I will be slathering CBD oil on my knee.

THC I have found helps with the pains that like to go shooting down my legs on random occasions.  At times they are so sharp it makes me stop what I'm doing.  I have a prescription for pain killers but those make me feel like I'm recovering from something else.  I find that a bit of THC oil dulls the pain quite nicely and puts me in a relaxed state.  However, that is only true with Sativa strains.  The Indica makes me want to eat everything and then take a nap.  It also soothes the pain but not worth the ruined day and weight gain. Otherwise, I can function much better when under the influence of a little THC.

PVNS? What is going on in my knee?

I had surgery just about 4 months ago.  It was an orthoscopy.  Is it orthoscope or arthoscope?  I'm not medically trained but apparently people in different countries have different spellings.  They even completely different names for PVNS.  But that's not what I'm talking about today.  I'm talking about just over the last week my knee has been doing it's old thing when there was PVNS in there.  Popping/cracking knee, difficulty getting down stairs or fully bending the knee at times.  I was doing great in my recovery since my surgery up until the newest onslaught of symptoms.  Even the shooting pains are back.   It's very possible it's coming back.  I will need to wait at least 2 more months before I should have an MRI to see if anything is detectable but I have heard stories that PVNS grows back much faster after it's been tampered with.  Such as the stories of people having an injury and then experiencing rapid growth of PVNS.  Even the surgeon who did my first PVNS removal surgery said that once PVNS has been irritated it grows faster.  Or that was his observation.  So now that I've had 2 surgeries maybe it's back already.  I recall after my first surgery nearly 4 years ago I noticed the symptoms of it's return 6 months post-op.   The issue I now face is what will it look like to get surgery with the way things are going politically in the United States?  For now it sounds like it will be possibly more expensive for me to keep living in this country.  If they can't get it right in America I could become poor unless I find a country that is more sympathetic to my knee situation and not as expensive to maintain these constant surgeries I face having possibly for the rest of my life. 

Creating Comfort with PVNS Surgery Recovery

When I was diagnosed and learned that I needed surgery my very first idea was to create a space in my bedroom that would be as comfortable as possible.  I've had surgery before and knew that I would be spending a lot of time in bed.  So I purchased a very comfortable mattress with an extra top that helps me feel like I'm floating on a cloud.  Then I got down pillows and one of those sit up pillows with the arm sides.  I put a tv and gaming console because spending insane amounts of time in your bedroom gets boring.  And I put a bookshelf near my bed so that I can read when I'm sick of staring at the screen.

Then I fitted my home with things for a handicapped person in a wheelchair. Partially because my daughter was in a car accident and broke her pelvis but that's another story.  I have a ramp installed to avoid stairs and grip strips so I don't slip when I'm on crutches.  I have a handle installed on the wall next to my claw-foot bathtub so I have something to hold onto when I have to get in the bath while standing on one leg.  And I also invested in a good set of crutches and a cane.

After my last surgery I thought jigsaw puzzles would be fun to do so I situated a table and 2 chairs.  I bought a 1000 piece puzzle.  A few days into recovery from my last surgery I got to puzzling.  My first issue was that it was very challenging to get comfortable with my leg being elevated while leaning over the table.  Then the other issue was my cat decided that rolling around on the pieces was super fun.  As well as chewing on them.  So I had to give that up which was disappointing.

I also invested in quick snacks or easy meals.  So that while I was recovering I could easily feed myself.  Trying to stand on one foot, with crutches, and cook, not happening.  Try carrying your plate and a glass while on crutches, yeah no.  So it has to fit in my pockets of the robe I have (I highly suggest getting a good soft robe with big pockets) in or the hoodie (that should also have a good pocket size on it).

UPDATE!  After my second surgery I found that those fold up walkers on wheels work a lot better for transporting food as well as getting around the house better than crutches.  That has been a game changer.

Post-Op and swelling

It's been more than 2 months since my knee surgery and I still have swelling.  Some days are better than others but it seems like it takes forever to get the swelling to to down completely.   At my last post-op I was told to keep it wrapped (compressed) and iced.  They didn't mention elevation but I assume that's good too.  However, I let my lifestyle run away from me and I don't spend the time keeping the knee iced or elevated.  Randomly iced, rarely elevated.  I do keep it wrapped and compressed.  I have avoided ibuprofen as I think it's a little hard on the system to take it consistently so I've tried resorting to turmeric.  I was told to take it daily but I resort to throwing it on my food randomly.  I'm a little too random with my treatments and suffering the ongoing swelling.  Otherwise I'm recovering nicely.