15 Days Post-Op Staple Removal

staples can be seen on xray

Pain level has been around a 3 and I've had to continue to take medication, elevate and ice. I had my staples removed today and it didn't hurt as bad as I thought it would. The staples that were lower on my knee didn't hurt but the higher that  they were removed on my knee the more they pinched. A couple of them hurt but all in all my anxiety about it was much worse than the event. They took an xray to check on how my knee was healing. Afterwards they put on steri-strips which will last a few more days.  I seemed to be a bit more sore tonight, however, I have been extra busy today going to my appointment and having my knee messed with.

Time to stop Narcotics

Marco & Tarma are snuggling

Two weeks post op and I'm getting real tired of not having a functional knee. I finally had the energy to find a good place to have physical therapy. It would have very nice to have had it set it up prior to surgery but I was waiting to get my new insurance information.  Emotionally I need to start physical therapy which begins on January 3.  I'm starting to go stir crazy and I'm beginning to get way to introspective for my own good.

It's time to cut back significantly on the narcotics. After two weeks of use they begin to make me feel foggy and a general feeling of unwellness. When I don't take them regularly I have nausea, mild gastrointestinal discomfort, irritability, anxiety and my nose starts running. I know these are the unpleasant feelings of narcotic withdraw.  It's time to take a break from narcotics and only consume tylenol because if I don't do this and I need pain relief when I start PT the narcotics aren't going to work.

I dropped my husband off at work this morning which is only 3 miles away and I should have realized I wasn't up for the drive to my doctors appointment when every foul word spewed out of my mouth on the way home. I was supposed to have my two week follow up with the surgeon today which didn't happen. My heart was willing but my body refused to make the hour long drive. I got in my car with an attitude that I can do this. It's mind or matter, but 15 minutes down the road tears were blurring my vision. It's one of those moments when you have to get real with yourself and just say this isn't wise and retreat. Thankfully my surgeon is part of a large organization that has multiple locations and I'm being rescheduled for a follow-up appointment at a facility much closer.

Two weeks Post-op Open Synovectomy

Two weeks post op and getting better every day. It's the first day that I haven't taken the Oxycontin 10mg ER and only one Oxycodone 5mg in the evening. The lymph massages help to keep the swelling in check. I'm not looking forward to driving an hour tomorrow for my post op appointment and it will be a double whammy because I'll be getting the staples removed. I watched some YouTube videos of staple removal and it looks like it may sting a bit.  I'll let you know how it went on tomorrows post.

Post-Op Day 9 - 13

I love This 

Progress has sped up within the last five days. I still wasn't feeling well enough to get groceries, however, I did some last minute holiday shopping with my mom in-law on Saturday. It felt good to get out but I still get fatigued quite easily. My pain level is 2-3 and I'm continuing with my exercises, ice and elevation.  Medication dose has remained the same but my activity level has increased to a normal off work level. Being up more has increased the swelling in my leg which of course increases the pain.  I work at a desk and at this point I'm still not well enough to go back to work without being in extreme pain.

When I was diagnosed a few weeks ago my number one concern was finding a physician that could educate me on this insidious disease. The 32 doctor offices that I called asking if they new about PVNS or if they could refer me to someone...didn't provide any direction or answers.  Feeling very alone I began searching for others with this disease and found a treasure on FaceBooks  "PVNS is Pants" site.  It is now my mission to create an easy to access, searchable list of PVNS qualified physicians. I'll be providing more details in the next few posts.

This blog was also created in order to pass on the knowledge that I was gaining that helped me make an informed decision about my care. I feel we must understand this disease in order to to have a logical discussion with our doctors about our short term and long term care. Since there aren't any absolute treatment regimens when dealing with PVNS...my surgeon put it best "I can only tell you what I would do if it was my knee, based on my circumstances." I took her advise but also realized that we have different responsibilities, financial resources and physical activity levels. This is where it becomes imperative to have an understanding of this disease and the different treatment options and statistics. Based on all of these factors I was able to confidently determine what treatment plan was best for me. I didn't want more surgery than necessary but I also wanted to decrease my chances as much as possible of it reoccurring.

I hope everyone had a terrific holiday, I certainly did. My mom in-law visited for the holidays and she was a life saver when it came time to making Christmas dinner. Bless her heart, she has been rehabilitating from 2 broken feet that required extensive surgery.  I am so happy that she was able to be here for Christmas. We had a wonderful time that passed all too quickly.  Mom drove to the airport to catch her plane and since I had to drive back home I had to figure out how in the heck do I slide into the drivers seat, not bending my knee and actually reach the steering wheel. That's when you very slowly move the seat forward and then swear a lot, turn, smile and wave bye to mom. The drive was only a half hour but the pressure on my knee...yikes... and the angle caused severe intermittent spasm making driving not such a great idea. A least surgery was on the left knee leaving my driving leg functional. In a couple of days I will have my two week check up and get the staples out.

Post-Op Day 8 & New Videos

My furry comforters

Eight days since surgery and I was finally was able to make breakfast and Steve's lunch, unload the dishwasher, clean house and do laundry today. I couldn't vacuum, clean the tub nor could I reach the real low spots that needed dusting.

It felt good to ride along in the car while my husband did errands. I did however bring my ice pack with me which was wise. My knee still doesn't bend enough to get behind the wheel and drive but hopefully next week when I go for my 2 week check up. Yikes that's when I get the staples removed. Post-Op day 8, pain medication remained the same, ice, elevate, Pain level was an overall 2 and I am really focusing on taking correct strides with my bad knee. I felt more like myself today :-)

New Videos:

Curious about what goes on in the O.R:

Knee Arthroscopy - Operating Room:

Easy to understand presentation:

Simulated Knee Arthroscopy- Chondromalacia:

Do you need a refresher:

Crutches & Bathing Equipment Use:

Post-Op Day 7: Prognosis

I spoke with my surgeon the day after surgery. She informed me that she began surgery arthroscopically and took an open biopsy, frozen section. This confirmed that I have PVNS. We had discussed prior to surgery that if PVNS was confirmed that she would revert to an open anterior synovectomy in order to have the best access to the joint for cleaning it out.  It was also quite obvious from all of the hemosiderin displayed as a brown covering over my cartilage that I have the diffuse PVNS. Fun Facts: It is possible to differentiate nodular from diffuse pvns by their unique cellular structure. 

My surgeon said that she cut out all of the pvns that she could see and that showed on the mri, however, it’s impossible to say you removed it all out because then you are talking about on a cellular level. Hence the reason to think about using radiation therapy to kill the remaining cellular bits. Personally, I will be speaking with a radiology oncologist after my 2 week check up to see what they advise in my case. 

My PVNS was primarily located in the anterior compartments and under the patella. I have overall stage 2 chondromalacia  on a scale of 1-5  (rather mild cartilage damage). She said the cartilage under my patella was looking rough. while in my knee she also repaired my torn meniscus. As far as the bakers cyst is concerned they don’t go after them because you risk nerve damage and the cyst should go away on it’s own since the torn meniscus and pvns has been taken care of. She would like to follow up with an mri in 6 months to check on the state of my knee at that point. Long term follow up care will be determined based on the 6 month report and any future symptomology.

I hope that it won’t come back... but knowing that I have done everything possible to decrease my chances of it returning will have to be my peace of mind. The next step will begin with physical therapy.

Stats for today: I’m feeling better then I have since surgery. Post-Op day 7, Pain scale 2-3 and I’ve been able to reduce my break through oxycodone to 1x daily. More bruising is becoming apparent but my incision is healing nicely.  I’ve been doing my prescribed exercises, ice, elevation. I’m able to just use one crutch if I’m cautious. I prefer to use both crutches so that I can concentrate on doing the full movement of a step (I’m not there yet). My doctor told me that I could move it and out as much weight on it as tolerated without causing an increase in pain. Please don’t do anything that hasn’t been cleared by your doctor. I have more energy today but have to be cautious not to over exert myself. Every day I’m getting a slight bit more movement but very far from normal. I work behind a desk and I’m not physically ready to return to work yet.

I decided not to get a shower seat and change to a hand held shower head. Psychologically it’s healthier for me just to wash my hair in the kitchen sink and do a sponge bath then to see special equipment in my bathroom. I was forced to depend on special equipment with a previous injury and it just has too many memories for me. I’ll expound on this subject on an upcoming post. 

Post-Op Day 6

Warning!! This is a whoa is me entry. Post-op day six and I continue to take the same mount of medication, pain scale 3-4, doing exercises, lymph massage which seems to be helping with the swelling. Mornings are tough because after having my leg elevated all night...As I lower my leg the blood rushes into it causing a sensation of building pressure and pain until I return it to an elevated level again. Note to self take pain medication prior to getting out of bed in the morning and prioritize what I need to do in the few moments that I can tolerate being on my knee. I'm able to bend and straighten my leg a little bit more but continue to only hobble between the bedroom, bath, living room and momentary stops in the kitchen. At times I'm tempted to only use one crutch but I've been noticing that it occasionally feels like my knee is giving out which causes a rapid bending of my knee, resulting in oh !*%!*# pain. My good knee that has been getting stressed by the extra work load is feeling better.  More bruising is now showing up and the inactivity and boredom is starting to get to me. The last two days have been tough physically and emotionally. I'll welcome getting out of the house at the two week mark to start physical therapy and I'll have my stapels out by then also. Yippi!!

I'm having a sad day today for a variety of reasons. I know my adult children love me but I it hurts and I start to feel angry when they don't seem to care. They all knew I was going to be having surgery and nearly a week went by when I finally decided to call them to let them know  ("In case you are interested...I'm ok.") I feel more like saying what the fuck? I would never think of not checking in on them. I'm disappointed in all three of them. I don't want them to be worried or over react, but I do expect a momentary pause and out of respect for them to lift up their heads in acknowledgement.  I'm not going to tell them anything from now on. This is not the first time this has happened but it will be the last. They are all still in their twenties and I know a lot of it has to do with their ages.  Guess who isn't even going to get a lump of coal in their stockings this year. I know #?% hmmm.

It's been a week since the hustle and bustle of surgery and I just feel tired and unmotivated today.  I'm sure that the narcotics play apart in my malaise today.  Until tommorrow.

Post-Op Day 5

Day 5 and the pain level has increased to a 4-5, taking the same amount of medications, elevation, ice, added lymph massage to the leg to help decrease the swelling. The swelling isn't bad but it sure increases the pain.

I'm just feeling down today which is a very rare thing. Maybe it's all of the narcotics which I hate taking. But it definitely isn't time to go off of them yet.

Post-Op Day 4

Bruising is starting to show

Day 4 and the pain level is at a 3 today has been the best day yet.

Time to get cleaned up. OK so I'm not able to get in the shower until Monday and even then I'm unable to get my leg wet. No how in the heck am I supposed to do that?

 I washed my hair in the kitchen sink because it's the perfect height for a knee that is unable to bend. Nothing makes me feel better than getting my hair washed. Now for the rest of this body. I suppose it is sponge bath time again with a basin of warm soapy water and since we are on this subject. I highly recommend sitting on the toilet where there is easy access to all body parts. Secondly I used shaving cream on my legs because they don't stay wet long enough with just soap and water and razor burn is the last thing that I want to deal with in this condition. Third, I invested in some nicely scented lotion when I found out that I would be having surgery. Something new and that smells good is always uplifting especially when I'm feeling haggered.

The synovectomy was my 23 surgery (totally other causes) and I learned that getting a new and easy to style hair cut prior to surgery is invaluable in feeling good about yourself when you hurt and your body feels like it is falling apart. A little make up and I'm now ready to face the world again. That is after I take a nap. I'm still taking the same dose of medications, doing my prescribed exercises and religiously elevating and icing my knee.

Post-Op Day 2 & 3: Discharged

Stapel closure

Approximately 3 A.M. on day 2 they had to switch me to injectable Dilaudid which finally got the pain under control, pain scale 8. I only had to take a couple doses of Dilaudid. The fluid flowing from my knee from the Jackson-Pratt drain was beginning to slow down. This drain removes excess fluid from the surgical site... if removed too early a hematoma could form that may necessitate reopening the surgical site. During the evening I have been using the commode that is next to my bed making things much easier.  

I'm in a lot of discomfort pain scale 6-8 and now experiencing a lot of nausea from the narcotics so they have added Reglan and Zofran to help decrease the nausea.. Note to self: eat crackers to settle tummy prior to taking narcotics I was able to take a sponge bath but I feel very weak and not well at all. I just want this day to be over.

Post-Op day 2 late afternoon,  pain level is at a 4 and it's time to get the Johnson Pratt Drain pulled. I highly recommend taking your pain medication at least a half hour before the procedure primarily to help you relax. Melissa the PA explained to me that the drain has a flat end and that is what I will feel as it exits my skin. She took off the tape that was holding the drain in place and had me look away and concentrate on a good thought. I went to my happy place that I have created in my mind. It's located in a jungle with waterfalls, beautiful foliage and butterflies (Don't laugh a famous surgical hypnotist taught me to create this place and it works well when you need to refocus). I focused on my breathing and I felt the tube sliding out which wasn't painful just weird feeling and then a a one second momentary catch of the drainage end as it was exiting the skin. It was all done within 2-3 seconds. The catch is rather intense but it's over with almost before you can process the pain. It wasn't as bad as I thought it would be.


Post-Op day 3 and I'm so excited because I'm able to go home today and I feel well prepared to do so. I have missed my husband this week. I haven't seen him since Wednesday, the day of surgery because I didn't want him to spend 1 1/2-2 hrs in rush hour traffic in order to visit me after work, and that is one way. We talked on the phone a lot and it was kind of fun because it reminded me of when we were dating and would spend hours on the phone talking about everything and nothing. I haven't been away from him this long since we started dating over three years ago. He is literally my best friend and we have done nothing but laugh for three years.

We had planned to spend the rest of our lives together and were totally committed and didn't feel the need for marriage. My health began to decline and I was unable to get health insurance so he brought up the idea of marriage. After much discussion and time we were married on September 31 of this year and have never been happier. People get married for many different reasons, but his decision to marry me knowing that I wasn't healthy holds a very special place in my heart. He is such a happy, upbeat person who I draw so much strength from. We have been through a lot in our short time together. We don't take each other for granted and the challenges that we have faced only bring us closer. I'm not more committed being married but I do feel a closer bond with him and he with I.

Time to see my husband again and go home. I took my medication shortly before my departure. Steve placed the seat as far back as possible and adjusted the back to my comfort. I slowly put my bad leg in the car first and then slowly slid the rest of my body onto the seat. I placed a pillow behind my knee for support and used a small blanket for cushioning. I filled my ice bag just before leaving and placed it on my knee. I would also recommend a large zip lock bag in case you become nauseated on the way home. I was very grateful to have these provisions in the car with me. I was taken directly home and by the time I was getting set up in bed I was totally exhausted and wanted nothing more than to lay down.

Post-Op Day 1

My journey began as an out-patient, however, once the PVNS was confirmed they had to switch to an open synovectomy which required an in-patient hospital stay. 

First post-op day I found myself in a very quiet, comfortable room filled with state of the art equipment, fully equipped with all of the amenities that a VIP would expect, however, I wasn’t a VIP. It has interactive TV which provides my personally assigned education videos, relaxation videos, cable, movies, games, internet access.  The view out the window was amazing where I could see the snow capped mountains, palms and even the fall colors of the trees. My view overlooked the entrance of the hospital displaying beautifully chiseled fountains in a zen like healing garden, a life sized metal tree and overflowing elevated ponds. At night it was beautifully illuminated. Most important was the exceptional care that I received from every member of the staff...doctors, nurses, CNA’s, laboratory personnel, dietary, PT, OT and the housekeeping staff. Everyone represented their profession in the best way possible.

After breakfast I I went with physical and occupational therapy to get cleared using crutches on the stairs, toilet, shower and such. It was a good time to do this before the block wore off. I was feeling great and wanted my surgeon to release me to home, however, she was much wiser than myself and said she couldn't discharge me with my leg still draining at 180 cc and they couldn't send me home with the drain due to the high rate of infection. I checked on the PVNS is Pants site and others where saying that they stayed at least three days when they had this procedure. The phrase that caught my attention was "wait until the block wears off." I reevaluated my status and decided to stay thank God because at about the 36 hour mark I was in excruciating pain.

I was taking Tylenol, 10 mg Oxycontin ER every 12 hrs, Oxycodone 5 mg for break thorough pain, and injectable morphine every half hour and I was still crying like a baby. My knee throbbed and burned and I would have given anything for just one minute to be pain free.  

PVNS Open Synovectomy Surgery Day

Metal Tree in Zen Healing Garden

Day One Post Surgery:  I was diagnosed with PVNS on November 7th 2011 and will have surgery 5 weeks later on December 14th. I’m scheduled to have an arthroscopic meniscal repair and biopsy of possible pvns and an open anterior synovectomy.

I was very impressed upon our arrival at the hospital for it felt like we were walking into a five star health spa. The hospital was serving a holiday meal for employees and visitors and the aroma of home cooked food filled the spacious multilevel golden domed entry. Who cares if I haven't been able to eat for the last 14 hours. The hospital is carpeted and beautifully decorated with garland and colorful decorations wrapped around the handrails of each level.

We  journeyed up to the second floor and checked into the Out Patient Surgery Unit. We arrived two hours early... which is the customary time to enroll in the hurry up and wait to get sliced and diced game.  As I looked around the elaborately decorated waiting room...I noticed some of the amenities that I was gladly paying extra for. They have a dedicated flat screen that is updated every minute to notify the families where the surgical patients are at all times in the process (pt is identified by a number).

"I'm going to be your nurse please follow me and we'll get you all set up for your surgery." My eyes kept darting around pre-op in amazement, We need to start an IV, however you look like a difficult stick so I'm going to call a technician in to use the ultrasound machine to visualize our vein, no worries she will inject an anesthetic to decrease the amount of discomfort that you may feel while we start the IV.  Man I was just thinking "I love any place that cares about how much pain I may feel from a needle stick. They must be really good in managing surgical pain." If you'd like we can give you a femoral nerve block so you don't feel the surgical pain for 24-48 hours. "Oh hell yes I want that too."  I was definitely being pampered by all who crossed my path.

I was even given a pretty purple marker to keep as a souvenir after my surgeon and I marked my surgical site together. Oops, I guess no funny stuff is supposed to be written on your surgical sight.  The surgeon showed me a pain scale chart and asked what level of pain would be acceptable after surgery. I may be blond but I can spot a trick question. "Zero!! would be the most acceptable. I just figured if this place was giving me an option, I didn't want to feel any pain. Hells yes, I'll pay extra for that.

My husband was given a pager with a read out in the center that would say for example "surgery is going well, surgery is almost over, patient is in recovery" allowing them to explore the the healing gardens and fountains on the hospital campus while I was having surgery. Time to say good bye to my sweetheart and be ushered off to the O.R.  Just when I thought every possible comfort was being given I suddenly feel a warm fuzzy surge of happy juice flowing through my body...whoosh nightie night.

"Hey when are you guys going to get started?" "Surgery is all done." But I feel great!!. Dang is that my leg. It looks like it should hurt.  Hmm? Oh I remember being given the compassion block so I wouldn't be in any more discomfort than necessary. Do you think they could make it last a week? Time to take a picture for my blog.  Just when I start thinking this has been the best surgery that I've ever experienced, I'm told I have diffuse PVNS and they had to open up my knee which is going to require me to stay the night.

I didn't realize it at the time but I am very fortunate to be in a country where the doctor can still choose what is best for their patient and It's not solely based on economics. That luxury is quickly coming to an end with the new health care bill that has been shoved up our asses. The majority of Americans said no and Obama ignored our pleas and said I'm going to do this whether you want to do this or not. Isn't that called rape?

Two Days Until Surgery

I'm so ready for all of this drama to be over. I like wearing shorts and skirts but now I'm going to have an ugly scar on my knee and I'm angry. I’m only 47 I've had over 20 surgeries and now scars on every part of my body. I'm angry that I'm going to have a huge one on my knee where everyone will be able to see it. I've learned to cover most of my scars by wearing the right kinds of clothes but in Arizona how are you supposed to hide a huge scar on the knee. I'm not vain, well maybe a little. I have a very handsome younger husband who loves me very much scars and all but sometimes I feel bad about being all scarred up. 

I know I could have the surgeon only use the arthroscope but I also know it won't provide the best chances of destroying this hideous monsters bone eating destruction long term. I don't want more surgery than is absolutely necessary, but how is one to know?  I suppose that's where trusting your surgeon comes into play. Cartoon from: klefever.blogspot.com

 I saw my primary care doc on Thursday to get my health clearance for surgery. He was very honest with me and said he really didn't know much about PVNS. I told him my take on it in the short amount of time we had. I was joking and said I was going to have a centipede tattooed on my scar. He just laughed. He's the kind of doc that everyone should have. He really cares and has very good intuition of what a patient is going through.

The good news is that I will have my back MRIs done tonight and it should rule in or out some stuff. Maybe I’ll actually find out why I went to the doctor in the first place

Appointment with Surgeon Episode 1, Part 2

My head is spinning and I'm so stressed about making the right decision. I'm fortunate that my surgeon is familiar with PVNS, however, as she put it there aren't any clear cut answers as far as over treating or under treating because everyone is so different. 

I have diffuse PVNS in my knee and already have a significant amount of arthritis. I'm scheduled for surgery next Wednesday and have some big decisions to make. This will be the first and hopefully the last surgery.  Dr. D will begin surgery arthroscopically...take a frozen section for biopsy.

If confirmed to be PVNS the surgeon needs to know beforehand how aggressively I want to her to treat it. Continue with the arthroscope or revert to an open synovectomy. Post surgery she will have me speak with an oncologist radiologist. 

Dr. D looked over my chest ct with me. She just said “no, don’t go there. It would be so incredibly rare for it to show up in your lungs.” What ever is in my lungs grew in the last month and is now involving the lymph nodes in the mediastium... they will take another ct of the lungs in 3 months. I’m still trying to get authorization from insurance for my thoracic and lumbar spine MRI to help them figure out why I have so much back/flank pain. Hopefully not PVNS.  

When a person starts aging they require more tests to make sure your healthy enough to survive surgery. Personally I think all of the tests are to cover the anesthesiologists butt. It would be cheaper for him to just wear depends in case I scare the piss out of him instead of me paying several hundred dollars to have tests repeated within the 30 day criteria window. 

Oh well, going to my primary care doc tomorrow to obtain a health clearance. I haven’t been healthy for a longtime and the PVNS was just a side trip on the way to finding out what’s causing me to feel so ill and cause so much pain.

I’m going to use distraction and refocussing now and go make some cut out Christmas cookies. 

Appointment With Surgeon: Episode 1, Part 1

I had my first appointment with the surgeon on Friday. Fortunately, she is experienced with PVNS and in the last 1 1/2 years since being in Phoenix she has treated 2 cases of nodular and 1 case of diffuse PVNS. She also has had experience with this disease while working at MD Anderson Cancer Center in Texas. 

When I arrived at the office, I had a x-ray done of my left knee and then the medical assistant did a very thorough job of obtaining my medical history.   It’s amazing how technology has advanced....allowing Dr. D to pull up my MRI and x-rays films on the computer. She explained to me that the narrowed space where the femur and tibia are almost touching is arthritis. I told her... “no!! on the arthritis I’m not accepting any more diseases.” Then she showed me the films of the mri...explaining that the dark spots that where showing up was the diffuse PVNS and that I have a Bakers Cyst and a meniscal tear. 

If broken ribs can be fixed by Photoshop then I'm sure this monstrous bone eating entity that is living inside of my joint can be erased.  Photoshop program is $ and surgery is $$$, well that's a no brainer. Hip hip hurray for Photoshop I'll fix my PVNS with a few clicks on the computer!  A cure has been found :-) PVNS wasn't that difficult to get rid of after all. I sure wasted a lot of energy worrying. Phew!! Dodged the bullet there.  Ok, enough with the denial, but it felt so good.

Questions to ask the Doctor

From: CSL Cartoon Stock

I saw the brainy doctor yesterday....as her staff describes her. Actually her biography is absolutely amazing and that is why I chose to interview her. Yes, I interviewed her to see if I wanted to hire her to be my physician. Just because a surgeon is willing to take your case doesn't mean that they are the best doctor for you in the long run. There are many things that you must consider.

What distance are you willing to travel and how often. If traveling a long distance... after surgery when would you be able to comfortably return home and who would you follow up with. I'm learning quickly that it takes a team to manage this disease. A primary care who coordinates all aspects of your care, a surgeon, radiation oncologist and a physical therapist. Your life may depend on how well you get along with your doctor and the staff.

Story Time:

A few years ago I was admitted to the hospital with septicemia. My internist had another physician covering him on that day. Long story short, the physician on call ordered an antibiotic and after it was running into my IV for about an hour, I started to get itchy and that feeling  of impending doom overwhelmed my body.  I've had allergic reactions before and notified my nurse of my symptoms and concern that I may be starting an allergic reaction. She called the doctor who said that I could have some Benedryl but insisted that the antibiotic continue to run until he could see me in the morning. I took the Benedryl and tried to relax. A few minutes later the itchiness had increased with very slight difficulty breathing but now it felt like adrenaline was pouring into my system. I asked the nurse to turn off the IV antibiotic and to call the doctor...she said, she couldn't turn off the IV but would call the doctor. 

After speaking with the doctor again she informed me that the antibiotic had to continue to run until the doctor could see me in the morning. By this time I was having more apprehension, itchiness and slightly more difficulty breathing. I ended up turning off the IV and said "I can't tolerate any more of this antibiotic and it needs to be changed. He isn't listening and I'm not going to let him kill me." Soon afterwards the doctor came into my room and I told him that I couldn't have any more of this specific type of antibiotic because of my symptoms and fear of going into anaphalaxis if I continue. He said in a very angry tone "If you don't let us restart that IV right now I'm discharging you to home and you'll be dead in a few hours.  After the statement that you made to the nurse about me trying to kill you...do you think I care whether you live or die? Do whatever you want because I honestly don't care."

Feeling very ill, alone, completely worn down, in tears and against every instinct, I foolishly consented for the IV to be turned back on. Within a few moments I was having great difficulty breathing, hives were emerging and my hands were blue. I frantically rang for the nurse multiple times, she never responded. I turned off the IV again and as I took my last gasping breaths I hit the code button on the wall and fell to the floor unconscious. In a nutshell, I awoke in the ICU after a severe anaphalactic reaction, very ill with septicemia and now a chest that felt like someone took a bat to it. I almost died that night because of personality conflicts and I was too ill to fight with the doctor... even though I knew restarting the IV could have deadly consequences. Yes, he was fired from my internists practice and the nurse was put on report. 

This was a very highly skill physician who I had seen in the office previously and knew he didn't like me and I didn't like him. It was just some type of negative chemistry and my instincts told me to stay away from him, but he was just there as backup for my physician. It's important to listen to your gut feeling and make sure that you trust and like your physician and the others in his office. I have dealt with many physicians and compatible personality trumps skill any day. Of course there needs to be a balance.

Don't underestimate the financial aspect of health care....can you afford to be treated by a specific doctor.

Questions to ask during your doctors appointment:

• What type of experience do you have with PVNS?
• What type of PVNS do I have?
• Is a biopsy required to make a definitive diagnosis? When will the biopsy be taken and how long for results?
• How has this disease affected my joint?
• Can it affect other parts of my body?
• What are my treatment choices and which is the best treatment for this type of PVNS?
• What are the risks and possible side effects of each treatment and long term effects?
• Will I need surgery or will I need it in the future?
• What are the risks of delaying or opting out of surgery?
• Are there any complementary or alternative therapies that I should consider? internal or external radiation
• Do any clinical trials or research support these alternative therapies?
• Are there any clinical trials that would be appropriate for me?
• Do you recommend any herbs or other supplements- such as fish oil or glucosamine?
• What should I do if my symptom worsen?
• Is there medication that I can take on an as-needed basis to decrease the discomfort?
• Would exercising make my condition worse or would it help it?
• What can I do to preserve my joint?
• About how much would surgery cost?
• What kind of out-of pocket cost can I expect?
• How often will I need checkups?
• Will I need physical therapy after surgery, when will it begin and for how long?
• How painful is each type of surgery and when would I be able to return to normal activities?

Waiting Game

I'm becoming a professional waiter and I'm not talking about the ones that serve food. It's been a month since I went to see my primary care Dr. about having flank pain. At that appointment I told him that the lateral side of my knee had been swollen for at least a year with an oblong soft mass on the back of my knee for 2 months but it didn't hurt nearly as much as the flank/back pain. Since then I've been waiting for this exam, that consult, this opinion and test results. Test results have shown pleural thickening in bilateral lung bases and PVNS in my knee. I know that it would be extremely rare but not unheard of for PVNS to be in the spine, knee and lungs. 

The docs haven't been able to identify the cause of the flank pain yet.  Now I'm waiting again until Thursday to see my pain specialist to determine if the flank pain is originating from the area in the spine in which my baclophen pump catheter is inserted. The pump controls severe muscle spasms due to previous neurological damage (unrelated to PVNS). I'm sure another MRI is in order. 

I am also waiting for my appointment on Friday with a orthopedic oncologist who is supposed to know about this "pain in the joint disease." I will be interviewing her to see if she has the expertise to treat my knee.  I'll post my interview questions under another heading. I'm very apprehensive about this appointment. I've read many accounts of this neoplasm returning after surgery and quite frankly I don't want to be included in those statistics.

JOKE OR REALITY

Three doctors are in the duck blind and a bird flies overhead. The general practitioner looks at it and says, "Looks like a duck, flies like a duck... it's probably a duck," shoots at it but misses and the bird flies away.

The next bird flies overhead, and the pathologist looks at it, then looks through the pages of a bird manual, and says, "Hmmmm...green wings, yellow bill, quacking sound...might be a duck." He raises his gun to shoot it, but the bird is long gone.

A third bird flies over. The surgeon raises his gun and shoots almost without looking, brings the bird down, and turns to the pathologist and says, "Go see if that was a duck.

Went Hiking Today

I finally looked up from my computer and realized I haven't stepped outside and smelled the fresh air for 5 days.  It's been just over a week since I found out that I have PVNS. I'm finally wrapping my brain around this disease after spending countless hours researching. Knowledge is power "so I should be lighting up like a flood light."

Prior to telling others of PVNS Diagnosis

Most people don't understand what PVNS is and why it's a life changing  diagnosis. Due to this fact they may not respond with the level of concern that this diagnosis warrants. When you tell someone you have a cold vs cancer they understand what that means and how to respond, unlike PVNS.

It's very difficult for me to tell my family of any illness or difficulty due to past events. Prior to my diagnosis of PVNS I had a five year medical history involving multiple hospitalizations and five months in hospice care due to a neurological disorder. As you can imagine it was very difficult for my children who were in high school and newly graduated at the time. People became worn out from watching me suffer and at times they just want it to end. This can lead to resentment, anger, guilt and sometimes estrangement from the person or situation. I believe this is what happened in my case. So believe me when I say, the last thing I want to tell my children is that I have a rare joint disease (awaiting confirming biopsy) that is not easily treated and that has no definitive end.

We live in an instant society where definitive endings are expected; if you have appendicitis an operation instantly cures you...bacterial infection and you're good as new after a course of antibiotics... broken bones and a cast is in order. How does one cope when their disease is long term? I'll address this topic on another post.

Getting back to telling family members about the PVNS diagnosis. First of all I need to understand this disease so that I can educate others about it. In the last five days I've read many case studies, forums, blogs, medical journals and books. I felt well prepared to tell my daughter and clinically I presented the disease and treatment well, but I left out the most important part "the human factor." I didn't tell her that I was really scared of this diagnosis, the treatment and it's unpredictability.  She asked if it was hereditary and I notified her that it doesn't appear to be. "Why can't you get something normal, why a rare disease" she asked. What am I supposed to do? If only I could have the doc choose a more socially acceptable disease that everyone understands. A disease that can be quickly fixed without additional disfigurement of my current patchwork of a body. A disease with a guaranteed happy ending. Sorry folks life doesn't work that way. I personally feel that I will be a very lucky woman if it turns out that I only have PVNS.

To do List prior to notifying people of diagnosis:

1.   Research: 

• Pigmented villonodular (vĭl'ō-nŏj'ə-lər) synovitis (PVNS)  is rare, almost always benign, locally invasive tumor of the synovium. PVNS may be nodular, diffuse or rarely a combined form. PVNS is usually diagnosed with a MRI and confirmed upon biopsy during surgery.  PVNS doesn't seem to run in families. This joint disease is characterized by inflammation and overgrowth of the joint lining.  It is usually only found in one joint but may be found in multiple joints and anywhere that there is synovial tissue. It affects the knee 80% of the time but may occur in the hip, shoulder, ankle, elbow, hand, foot, tmj and the spine. The synovium lining makes extra fluid, causing swelling and making movement of the joint painful. There is controversy whether PVNS is a neosplastic or an inflammatory process and there is a cellular difference between nodular and diffuse PVNS. Surgery is usually indicated and radiation therapy may also be useful in killing the remaining cells, but not without risks of it's own. PVS is aggressive and returns about half of the time. In the worst case scenario joints must be replaced and very rarely amputation.

2.   Differential Diagnosis: 

• hemophillic arthropathy
• soft tissue sarcoma
• fibromatosis
• synovial chondromatosis
• septic arthritis
• inflammatory arthropathies
• hemorrhagic synovitis
• tuberculosis

3.   Treatment Options:

• arthroscopic vs arthrotomy (open) surgery
• partial vs total synovectomy
• surgery only vs surgery and radiotherapy, or colloidal chromic P32 synoviothesis

4.   Choose an energizing warriors attitude: 

• Build an army with the most qualified doctors and medical facilities. This is a disease that may have many battles and may take me to foreign lands. My arsenal of knowledge will be strong, my tools and army powerful. I accept the challenge; I fight for freedom of movement, health and quality of life. 

5.  Now it is time to tell others of the challenge before me, my attitude toward it and what I may need     from them on this journey. 

Emotional Roller Coaster

I initially went to Dr. Bryan due to long term flank pain. During my appointment I mentioned that my left knee had lateral swelling for over a year and a mass behind the knee for a couple of months. My knee is only moderately uncomfortable with occasional flairs of increased swelling and pain. The doc ordered an MRI which showed signs indicative of PVNS. Great, an incidental finding that I could have lived without.

  Seriously? Now I have to deal with the flank pain, PVNS and another incidental finding from a CT that was done on the abdomen and chest showing bilateral undifferentiated pleural thickening in the lung bases. The radiologist is requesting a follow up ct in six months and the doc is wondering if I would like a referral to a pulmonologist in the interim. I'm overwhelmed and frightened to the point of near immobility, however, I understand the importance of finding a surgeon that is very familiar with PVNS in order to have the best chance of a positive prognosis. Thankfully I have the research skills to find such a person.

Do all of these findings have some type of connection? I know it's just my paranoia running away with my imagination; but what if the PVNS turned out to be malignant and it had already metastasized into the pleural cavity of the lungs and what if the PVNS is in the lumbar vertebrae causing the flank pain. Possibly plausible but very, highly unlikely. I don't believe that is the case but it is my worse fear.

I've been in a five day reading frenzy finding out everything that I can about this mysterious joint disease that may threaten my quality of life. At the very least it's going to cause even more pain due to the surgery that is required, time for rehabilitation, medical expenses increasing all while I'm unable to work. I would like to ignore the PVNS, however, the case studies have proven that would be a very unwise choice. The sooner action is taken the better chances of it not returning. Denial is a luxury that could be very costly. My attitude toward what is happening is much more powerful than the uncontrollable physical events taking place.  I will face this with dignity and grace and be triumphant as I have been in the past.           

PVNS Diagnosis

Nov 07, 2011: MRI - Lower Extremity Joint w/o contrast
History: Mild Left Knee pain, lateral swelling

Findings: 
Ligaments: The ACL, PCL, MCL and colateral ligamentous complex are intact.

Menisci: There  is globular degenerative-type horizontal pattern tear body lateral meniscus with extension to the free edge. The medial meniscus is intact. The posterior meniscal roots are preserved.

Osseous Structures and Articular Surfaces: There is no acute fracture. No focal bone marrow contusions are identified. There are changes of grade 2 medial compartment chondromalacia along the posterior inner and peripheral medial femoral condylar and opposing medial tibial plateau articular surfaces. There are changes of grade 2 lateral compartment chondromalacia along the central to posterior and peripheral lateral femoral condylar and opposing lateral tibial plateau articular surfaces. There are changes of grade 2 chondromalacia patella along the medial patellar facet and adjacent patellar medial eminence, as well as along the medial femoral trochlear articular surface and adjacent femoral trochlear groove.

Extensor Mechanism: The extensor mechanism is intact. The medial and lateral patelar reticula are within normal limits.

Miscellaneous: There is small knee joint effusion. There is a small to moderate-sized complex Baker's cyst. There is diffuse internal joint space synovitis with hypointense signal throughout the synovium, suggesting hemosiderin deposition. This appearance is compatible with underlying PVNS. There is a 5 cm x 3 cm complex cyst along the posterolateral joint line, which may reflect ganglion, synovial cyst or atypical parameniscal cyst. The popliteal neurovascular structures are maintained. There is no evidence of muscular atrophy, nor signal alteration to suggest denervation-type injury. No high-grade musculotendinous injury is seen.

Impression:
1. Intact ligaments.
2. Globular degenerative-type horizontal pattern tear body lateral meniscus with extension to free edge.
3. Intact medial meniscus.
4. Grade 2 medial compartment chondromalacia, lateral compartment compartment and chondromalacia patella.
5. Small knee joint effusion and small to moderate-sized complex Baker's cyst. There is diffuse internal   joint space synovitis with hypointense signal throughout the synovium, suggesting hemosiderin deposition. The appearance is compatible with underlying PVNS. There is a 5 cm x 3 cm complex cyst along the posterolateral compartment joint line, which may reflect a ganglion synovial or atypicl parameniscal cyst.

Index and Glossary of terms: 
What is Pigmented Villonodular Synovitis: 
Knee Anatomy Movie:


Grade Chondromalacia:  
Grade 0: healthy cartilage 
Grade 1: the cartilage has some soft spots 
Grade 2: minor cartilage tears are visible 
Grade 3: deep lesions in the cartilage that are more than 50% of the cartilage layer 
Grade 4: the cartilage tear goes all the way to the bone