PVNS, Hospitals Are Not Created Equal, TKR or Partial

MRI Bad News

Energy drained and my heart plummeted when I read my 6 month follow-up mri report "new areas consistent with pvns, lateral meniscus tear, new medial meniscus tear, and tendinopathy." After an open synovectomy, months of physical therapy, radiation treatment and surgery to break up adhesions... I was exhausted and couldn't bear the thought of more surgery. However, that is exactly what I needed to do because the pain had become debilitating.

Not My Usual Hospital

Fortunately, I was able to schedule an arthroscopic procedure with the same surgeon exactly one year to the date of my first pvns surgery. This time I had to have surgery in a different hospital and I wasn't comfortable with my surroundings. This particular hospital had the look and feel of an inner city hospital on the wrong side of town...if you know what I mean. My admittance to the presurgical area seemed to be rushed even though it was thorough, which made me feel uncomfortable. However, my confidence in the hospital continued to diminish  when the nurse couldn't get an IV started and began freaking out about it. The upside to this is that my IV was started in the surgical suite and the block was given after I was already unconscious. I didn't realize at the time that having the block administered after I was asleep increases my chances for possible nerve damage. Fortunately I was fine but would have liked to have known. 

Recovery

In recovery I was given morphine and my arm turned red and itchy. Not a true allergy, only a sensitivity so I was given benedryl. Within 5 minutes I was asked if I was ready to sit in a chair. "well I guess so." So they transferred me to stage two. 

While in stage 2 recovery my husband notified me that there was good and bad news. "Bad news?" Nope I don't want to here any bad news. "I'll take the good news first." Thankfully, the suspected recurrence of pvns turned out to be scar tissue. Finally, I catch a break with this dreaded disease. Then "the hammer" shatters my good fortune. In a hesitant voice my husband informs me that I need a knee replacement and they could do it in about 6 weeks. Yikes! More surgery is not what you want to here when you are just waking up from a surgery.

My groggy head was still trying to comprehend the news... when after only being in stage 2 recovery for five minutes I was asked if I was ready to go home. Being drugged, uncomfortable in my surroundings, questioning the qualifications of the nursing staff, home seemed like the safest alternative.  The nurse handed my husband some papers and asked if she needed to call transportation or if I could walk. I'm barely conscious, just had knee surgery...what the heck. 

On the way home, I realize the nurse never gave any verbal instructions and I didn't have a clue as to what I needed to do for follow up. Folks this is not what you want to experience from a hospital stay. Thankfully it was just an outpatient procedure but this is why it's important to check out the hospital and make sure you are comfortable with it.

It has taken me a couple weeks to wrap my head around needing a knee replacement. I'm only 48 and the thought of a total knee replacement is terrifying. I figure knowledge is power, right? So I went on utube and watched several TKR videos and was cringing the entire time. 

Appointment With New Surgeon

Now that I had desensitized myself to the idea of a knee replacement, I made an appointment with my surgeon to ask her some questions. After a couple more weeks and much research I finally saw my surgeon. Long story short she feels that I may be a good candidate for a uni-compartmental replacement/resurfacing which is a fancy description of a partial replacement. So I make an appointment with an orthopedic surgeon who specializes in this technique and waited 2 more weeks which just gave me more time to do additional research on partial replacements. Well, what I was finding in the literature was not promising and quite frankly discouraging for the long term success of this technique.

Finally the day has come to get some questions answered from my possible new knee replacement surgeon. I was equipped with a list a questions fueled with the ability to test the surgeons personality, preparation, skill and experience. All of these traits and aspects are very important to me. I was impressed and it's not easy to impress me. He prepared for my appointment, thoroughly knew my case, and had already read all of the reports prior to my arrival. The only thing that he needed to see was the photos that were taken of my knee at the time of my last surgery...which I brought with me.  He thoroughly in a non rushed manner answered every last question. 

He presented a couple of different options. #1 He could put plugs of cartilage in my knee, do a Patello Femoral Resurfacing, or go back to my pvns surgeon for a total replacement. As we discussed what role the pvns could play in the different choices we both agreed that cartilage transplant probably would not be the best way to go. I told him of my aprehension of a partial replacement due to the recent studies. He informed me the studies reflected the old hardware and patient selection guidelines. The problem have been identified and they corrected the design flaws in the hardware and the short term reviews are wonderful but obviously there aren't any long term studies yet. 

He is confident that the resurfacing (partial replacement) would buy me some time and that it would be a better choice instead of a full replacement since the damage was confined to the patello femoral area. In a couple of weeks, I'll be having a resurfacing, in other words a partial knee replacement.  I also learn about many other procedures and forthcoming bio joint replacements. Yup, they have grown new joints for animals. The links are in the side bar of the home page. Immediately after this appointment I went across the street and checked out the hospital to see if I felt comfortable, talk with workers and pick up information about the hospital.

Update Two Years Post Partial Replacement


I'm happy to say that I'm approaching three years of being PVNS free and the Partial knee replacement was an outstanding success...for a year. I chose the partial because the only area in my knee that was showing arthritis was in the central area. I'm not sure why, but it only took one year and now the lateral and medial aspects of the knee are showing severe arthritis. I'm not sure whether the having previous pvns or the radiation therapy has played a role in the accelerate of cartilage destruction or not. My instinct says that it's been a factor. If I'm correct, than I wouldn't suggest having a partial knee replacement, because in the relatively near future, I will need my partial knee revised to a full replacement. Which is a nauseating thought. 

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

PVNS, Is Profit A Driving Force Behind Clinical Trials?

Many of us who have pvns are desperate to find any treatment modalities that may offer us a chance at irradiating this flesh eating monster from our joints. In doing so we must be very careful and ask many questions before participating in clinical trials. I thank everyone who has participated in a clinical trial and I'm neither for or against any given treatment option. With that being said I am very concerned... What Happens when Profit Margins drive Clinical Research? Check out this article to find out. http://www.motherjones.com/environment/2010/09/clinical-trials-contact-research-organizations

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

Finding A Balance With PVNS Pain Management

The pain management for PVNS can be difficult. I see a pain management specialist but not for the pvns. If you have chronic long term severe pain issues that physical therapy and healthy living is not able to get under control, then pain management may be for you. They have many modalities of treatment available such as injections, blocks, and non narcotic medications which help many people. 

I have a pain pump inserted in my abdomen which requires very expensive maintenance every 3 months and if something goes wrong with it or insurance,  I can die. I take oral narcotics for break through pain but I am not pain free and never will be. I have learned that staying mentally healthy and moderate activity is the best way to decrease the pain. If I just pop a pill when I hurt they cease to have any effect. In the meanwhile the higher the narcotic dose the more your brain function declines. 

In the end most pain management patients understand there is a fine line in balancing medication, pain, brain function, activity, physical and mental health, biofeedback, self hypnosis, acupuncture techniques...in order to live a healthy happy productive life. The people that go into pain management and solely depend upon medication to control pain become medication dependent with very poor pain control. So if you feel pain management is for you ask you primary care physician for a referral and schedule a consultation to inform you of what is available to help control your pain. 

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

Were You Recently Diagnosed With PVNS?

PVNS is a Marathon Not a Sprint

It's helpful to understand that pvns is not a race in which you sprint, but a marathon that takes time, proper information, pacing and preparation in order to successfully reach the finish line with grace. PVNS is not a trip to the grocery store, but a family vacation in a foreign country with an undesirable passenger along for the ride. In car terms pvns is not a drag race but an Indy 500 which takes endurance.  

If you were told that you had to run a marathon tomorrow...that would freak you out pretty bad, right?  Well, being diagnosed with pvns elicits similar feelings. So the feelings that you are experiencing now are completely normal and healthy. I know it sucks, but just go with it.  

Not Cancer But...

I always hate when people say "it could be worse." "like this isn't bad enough? WTF." Sure I'm glad that it's not cancer that is going to kill me, but like cancer it has a voracious appetite and I can just envision it eating away at my joint like a Pac Man in a race.  Just when you think it has had it's fill...it starts eating away like a crazed bulimic again. How do we tame this monster? Take a deep breath and realize that you are going to learn how to control this beast by educating yourself and fighting back with knowledge. 

Informed Decisions

Making informed decisions in your treatment and long term care will give you the weapons to fight and prevent the pvns from sinking it's elongated villinous claws into your throbbing joint. Most feel overwhelmed and frightened as to how the pvns is going to effect their finances, lifestyle, family dynamics and socialization. This is understandable since your not so friendly carjacker is trying to gain control of the vehicle, but remember it's your life  and you can fight to regain control. Hopefully, you will be one of the fortunate people that will be able to kick this beast out of your car and tow him behind in a trailer and semi-forget about him. Understand that you will be driving your vehicle at times and at other times you will be an unwilling passenger.  However, it is up to you to design the road map in which you are going to travel. Learning to anticipate and plan for the possible potholes, financial cliffs and rugged terrain. This planning will make for a much more enjoyable trip. I didn’t want to take on this passenger/carjacker either but fortunately, most are in a country where they have access to some of the best medical care in the world and I am very thankful for that. 

Once again, pvns is not a sprinting race but a marathon that takes time, education, proper pacing and preparation in order to successfully guide your way gracefully to the finish line.

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

How is Swelling Harming My PVNS Joint?

I found this wonderful article explaining the importance of minimizing swelling. It was written by verycoolrunner at coolrunning.com.au and it goes like this.

One of the main reasons for using ice post-injury is to slow down the metabolic rate of the cells in the area (like a vet putting a lizard in the fridge before surgery, you know...).  By doing that, you can temporarily decrease the cells' requirements for oxygen, and hopefully fewer cells in the area of your injury will suffer damage related to lack of oxygen, in the acute phase of your injury.  (A complete aside, here - the rooms used for heart surgery and the like are also cooled, for the same reason as the lizard going into the fridge - to decrease the metabolic rate, and decrease cell damage as a result.  Neat, huh - but VERY cold for the theatre staff)

The reason that your tissues in the injured area are at risk of damage from lack of oxygen, is due to THE SWELLING, because swelling increases the pressure surrounding the cells in the injured area.  That makes it harder for the blood supply containing oxygen and nutrients to battle (or diffuse) their way into your cells.  Like trying to pump up a bike tyre with a fat guy sitting on the bike - it's a pressure thing, you know? (and thank you to my spouse for that particular analogy).  

The reason that the swelling is there in the first place, is because when you injured yourself (and damaged some of your tissues - you reckless maniac!), the damaged tissues called for their own ambulance - and a fleet of them arrived.  This is the response we know as inflammation, and it involves an increase in blood flow to the area, an increase in the permeability of the walls of your capillaries, so lots of fluid leaks into the space in your tissues surrounding your cells, and often clots there (read - stacks of ambulances parked all over the place), and the cells themselves swell.  The effect this inflammation is intended to have, is to put up a barrier around the injured area (read - police roadblocks), to slow the passage of any bacteria or toxic products that may be in the injured tissue, into the surrounding healthy tissue (read - quarantine).

So the swelling does have a purpose, but it also comes at a cost to the tissues in the "quarantined area" - with all those ambulances parked all over the place, it's hard to get on with things.  Then, when the quarantine period (read - acute inflammatory phase of injury) is over, the tissues have to repair their damaged lives.  This includes rebuilding and remodelling, and this is where your friendly physio will start raving on about collagen fibres in disarray, and scar tissue in abundance.  To avoid this (both the scarring and the raving, I mean), most people set out to minimize the inflammatory response as far as possible, when they get injured.

Now Macattack may get hot and bothered when I type this, and demand to see references (sorry, Macca) - but when I was a student, there was more evidence to suggest that the best way to prevent swelling, was to elevate the affected part, and put a pressure wrap on it.  The wrap increases the pressure from outside the body, and makes it harder for the extra fluid to leak into the tissues etc., as part of the inflammatory response, while the elevation serves to make it an uphill drive all the way for those darned inflammatory ambulances to get into the tissues.  Meanwhile, the rest and ice part of the RICE equation, are meant to decrease the metabolic rate of the cells in the injured area, to hopefully minimize the damage to those cells, and therefore lessen the rebuilding and remodeling that will be required.

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

PVNS Tears, Bridges, Journeys

Yoda Jedi Master

I've been using my time doing origami and finding new articles for this site so I haven't written lately. You may ask what does origami have to do with pvns. Origami is a way that I refocus my senses away from the constant burning pain of neuropathy in my back/legs and the insistent dull knee pain of PVNS. I love the textural feel, pliable character and the sounds created when folding the many different types of paper. It may sound weird but it's exciting to take a flat piece of paper and make an art form out of it.

Autoimmune Testing

Finally finished with all of the massive amount of testing for immune deficiency and auto immune disease workup. Fortunately all of the tests came back good and at least for me there isn't any type of connection with those types of diseases and the PVNS. This was important to check out since I've been feeling so poorly and due to the possible recurrence of PVNS at the 6 mo follow-up. Well that was the good news but my brilliant research rheumatologist asked if I wanted her to tell me the truth. I'm thinking, hmmm??? No!!! because it doesn't sound like anything that I want to hear, on the other hand yes!! because that's why I'm here.  Now the problem with hearing the truthful answers to my many questions is that it can be quite difficult to swallow, internalize and digest.

Not Fibromyalgia

My doctor was unconsciously shaking her head as she mulled over my extensive medical history. Reviewing the long list of illness, injury and trauma... she explained how each malady and it's residual effects has effected my body long term. She eventually looked at me and stated in a very serious manner "You have residual effects from previous illness, arthritis, PVNS, a chronic pain syndrome and polyneuropathy that is making you feel so bad...and no you don't have fibromyalgia." "Your pain is severe and has known physical causes which means that you need to trust and work with your pain management doctor."  Now I'm usually the eternal optimist but not today. Today I am crushed knowing that I will never enjoy another day without pain. Some days will be better and some worse but never pain free.

Momentary Despair

This is a day that I wish to forget my weaknesses. Today I will cry a river for my broken spirit. I will curse my knee for giving-way nearly hurdling me down stairs. I will huddle in a corner and hide from bills, worries and responsibilities. Today I will mourn for the activities that my body refuses to participate in. My mind is young but my flesh has aged beyond its years and is foreign to me. With this insight I acknowledge my shame and fears. Before giving in to total despair let me take a closer look at my life.

Memories of No Hope

Today, I also cringe at a road map of scars which has built a bridge of memories. I crawl into my past filled with battles won and lost, times of sadness and great joy.  I look at photos of myself in a wheelchair... remembering the doctor telling me that I must accept this fate. I refused and today I smile for I walk. Today I confidently breathe knowing that only a few short years ago I had was attached to high flow oxygen, an IV providing continuous morphine, a tube inserted into my intestines to provide nourishment and a life expectancy of a week. I have bled and suffered to save strangers lives...for those occasions I am most proud.  This pride and strength allows me to stand tall in the face of all adversity. It doesn't matter how deep your river may be for the importance lies in how well and quickly you are able to build a bridge, cross the river of tears and continue on your journey.

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

Building Resistance to PVNS Tumors

{Correction 02/13/2013): 6 mo f/u MRI 06/2012 showed a false pvns recurrence. It was proven during f/u surgery 12/14/2012that the mri was showing scar tissue and not pvns. After you have surgery the mris become more difficult to read accurately. After the 6 mo f/u mri I had two more mris done showing that the (false) pvns was remaining stable (unchanged) that was the clue that it was scar tissue and not pvns.} The tests that I referred to in this article all came back good. I do not have an over or under active immune system nor anything besides osteoarthritis from age and pvns.

Being a Pioneer

I am well aware that we are all guinea pigs and it doesn’t matter what treatment we choose. On a positive note the more data that is collected increases the chances that a common link could be found. I commend everyone who is willing to try adjuvant treatments because you are the pioneers that may someday make a cure possible. Note please make sure your physicians are sharing your information (positive and negative) with researchers and not just keeping it in their private files. 

MRI Report of  a False PVNS Recurrence

Why did my treatment regimen fail when others (approx. 80%) with the same amount of PVNS, damage and treatment remain in remission? During surgery the joint was visualized arthroscopically then an open complete synovectomy was done. My orthopedic oncologist is a top rated surgeon familiar with pvns. She removed all visible signs and areas that showed on the mri. I followed up with 18 treatments of 200 greys each which would have disabled . My six month follow up mri showed a new area of recurrence. Something is making my body more susceptible to the pvns and until that is corrected I’m afraid it will continue to recur, destroy my joint as it has caused the chondromalacia to worsen in just one year even with surgery. 

The cellular composition of diffuse pvns is exactly the same in each individual so this means that pvns itself has the same strength and destructive properties in everyone. What makes some bodies more susceptible to a recurrence? I have arthritis in both knees and throughout my spine that is well out of proportion to my age and lifestyle. 

I’m working with a research arthritis specialist who is running many tests to see if I have some type of defect that makes me more susceptible to arthritis and or pvns. I am also working with an immunologist who is checking to see if there is a link via the immune system. some of these blood test take a month to get the results so I will post any information that they may provide. For now the doctors are trying to build up my body as much as possible immunologically by addressing my allergies (they have already done allergy testing for which are minimal), with diet (I’m looking into cancer diets), and supplements including Vit D because it was very low and low vitamin has connections to tumor growth. Hopefully along with what they find out from the blood tests I will be in better shape to resist future tumors (recurrence) after my next surgery. 

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.