PVNS Negligent or Criminal

Being educated and knowledgable about your disease is the only way to ensure that you will receive the best care available. It will also allow you peace of mind knowing that you are making the best health care decisions. The moment that you leave everything up to the physician is the moment that you will be disappointed.

Yesterday I ran across the story of a guy with newly diagnosed pvns that was causing him great discomfort and was interfering with his ability to work. He was told by his doctor that nothing could be done and to go home and learn to live with the pain. Being distraught his parents parents posted a request for information about pvns, which I provided them with resources.

It angers me that a physician could be so lazy as to not even run a basic informational search on a disease that he/she is unfamiliar with (prior to telling the patient that nothing can be done). That is not only negligent but criminal. A doctor swears an oath to do no harm above all else.

It does remind me that many people have absolute faith in doctors and it doesn't even cross their minds to seek out independent information. I'm fortunate to have a doc that will tell me when he doesn't know something. Peoples, docs don't have the time to keep up on the latest of every disease and it is very helpful to them when you bring in articles and links to specific information that may help them to further their education of your specific disease. You can present the information like this "I was reading the most interesting article about "---" and thought you may also enjoy reading it...as you hand it to them. The two key words are "interesting and enjoy."

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 Exercise and Nutritional Information

I have been looking for an easy to use site with exercises and accurate nutritional information and I finally found an awesome site this morning. I placed a couple of links to this site in the side bar under "new items."  Bodybuilding.com

You will notice that the site focuses on body building but it a lot of really good information on overall body health and how to get our bodies to respond to our needs and demands. 

Many of us have spent a lot of time in physical therapy learning exercises but then forgetting how to do them properly because it is easy to slack off and forget. Please check with your doctors or physical therapists before starting new exercises or nutritional programs for obvious reasons. 

Seriously guys this is a site to check out if you are looking for specific body part exercises with video. Just click on the body part, in the side bar choose equipment or none, type of exercise and much more. Then a selection of videos are shown. The second link has information as what to do when your body aches. An example is below.

Caution When Using Ice:
When using ice only use it for ten minutes. Leaving the ice on too long will result in the body sensing cold and it will respond by forcing blood into the area and can result in additional swelling.

So leave ice on, ten minutes and no longer, then remove the cold and allow the body to return to normal temperature then repeat the ice treatment for another ten minutes.

You should repeat this process several times to obtain a process known as "pumping" that removes toxins and swelling from an area.

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 to determine your individual risk factors. 

PVNS False Recurrence & Angry

(Correction 02/13/2013): 6 mo f/u MRI 06/2012 showed a false pvns recurrence. It was proven during f/u surgery that 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.

For the peeps that are new to this or just had surgery...I don’t mean to scare you or come off negative but I’m seeing way too many people with negative outcomes and I’m angry. I feel discouraged after spending nearly $40 grand ($1750 out of pocket), I have more pain in my knee post surgery, radiation therapy induced tendinopathy, manipulation under anesthesia, and six months off work to get rid of and recover from this disease... only to have it reappear with more of a vengeance within six months. Due to the extra strain my good knee now has an effusion (no pvns) but it is swollen and hurts all of the time. Now 2 bum knees. Thank goodness for insurance.

I know that the treatment decisions I made gave me the best chance of recovery (15-20% chance of recurrance), however, treatment seems to have been a total failure. Now the diffuse pvns appears to be in a new area within the intra-articular notch and within the bakers cyst which is enlarging again, synovitis has recurred and to top it off I have radiation induced tendinopathy in my knee. How can this happen so rapidly and what next?  The docs would be much more accurate in saying “there is a 100% chance that pvns is going to fuck up your life or not” no matter what treatment choices you make. Where are they getting their figures anyhow? How can there be a 9-45% spread in recurrance statistics? To me that is a useless statistic. I understand error margins but that is ridiculous. I think to myself “how bad would it have been if I hadn’t treated it aggressively but on the other hand I wasn’t in pain and only had minor swelling prior to surgery. What if I had just left it alone? Would I be better or worse off? I can’t help but to ask these questions.

On a positive note I have the worlds most supportive husband who loves me with all of his heart. He is stressed at work and now my health and financial situation causes more stress. He says no but in my heart I feel like I’m letting him down and not fulfilling my part of the responsibilities. I don’t feel good about me as a person when I’m not working and I can’t shake that.

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 to determine your individual risk factors. 

PVNS MRI: False Recurrence at 6 months

(Correction 02/13/2013): 6 mo f/u MRI 06/2012 showed a false pvns recurrence. It was proven during f/u surgery on 12/14/2012 that 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.

I picked up the 6 month f/u report on the pvns knee as I was waiting to have an mri done on my per se good knee. My heart plummeted and my energy drained as I read that the pvns is back and also now in the tendons. “No!” flowed out as I exhaled. Realizing I was surrounded by strangers... I became quiet again. I kept reading the report over and over as if reading it again would miraculously change the words. 

If I actually believed in God I’d be saying “what the fuck” and blaming him. The truth is no one is to blame except for this bastard of a disease that insists on having a presence in my life. I’m just wondering “now what?” 

I already had an open synovectomy for diffuse pvns of the left knee in December 2011. Endured the severe fatigue and expense $26k of 18 radiation treatments at 200 greys each, causing adhesions to form. Then 4 1/2 months post op going back into to surgery to have manipulation under anesthesia done on my knee in order to regain movement. Along with all of this 4 1/2 months of PT. After all of this treatment my knee feels destroyed and knee pain now wakes me up at night along with the back pain. 

I was hoping for the best but my gut feeling kept telling me that my knee was not healing properly. It remained way too hot, swollen, stiff and painful for everything to be ok in it. I was hoping to be one of the lucky ones who are able to put pvns on a back burner and continue forward with life but obviously 20% recurrance wasn’t good enough odds for me.

I feel like I'm in a boxing ring and every time I get back on my feet another fist is smacking me in the face. I know that others deal with much worse situations but today I’m going to throw a pity party, pamper myself and rest before the next round.

SIX MONTH FOLLOW UP MRI

Referring Physician: Amalia M De Comas MD

SimonMed Palm Valley II DIAGNOSTIC IMAGING REPORT

Age:47 Diag. Imaging #990526

Patient: Jeffrey, Carol Status: Outpatient

Exam # 3245538 - Jun 18.'2012 - MRI - LOWER EXTREMITY JT W/O CON - Left

CLINICAL DATA: Left knee pain and swelling, history of synovectomy and history of tumor with radiation treatment in the knee.

COMPARISON: MRI Left Knee I ll7l20ll MRI TECHNIQUE: Multiplanar, multisequence imaging was performed without contrast. IMPRESSION:

1. New, diffuse thickening and intratendinous signal involves the extensor mechanism quadriceps and patellar tendons where AP dimension distal quadriceps measures 2 cm and mid fibers patellar tendon 1.4 cm. This may relate to rare intratendinous extension of pigmented villonodular synovitis, postsurgical or less likely, post irradiation changes, correlate clinically.

2. Joint effusion and synovitis again noted. Hypointense posterolateral signal abutting the tibia is not significantly changed. Mixed signal intensity along the posterior capsule appears stable with additional, 12 mm hypointense focus superior margin of the capsule which is new compared to previous study. Overall decreased size of popliteal cys! however, multiple foci of hypointensity present diffusely within popliteal cyst most prominent at the inferior margin. Suprapatellar soft tissues and region of previous hypointensity not entirely included on current examination. Findings most likely relate to residual focus of pigmented villonodular synovitis and/or recurrent disease.

3. Lateral meniscus degenerative horizontal cleavage tear body extending into the anterior horn is unchanged. No acute injury. Laterulmeniscus appears intact.

4. No acute ligament disruption. Stable mild tricompartmental degenerative changes where osteophytes and chondral thinning noted. No acute fracture. Additional soft tissue support structures grossly maintained.

dd: Jun 19,2012

Reported by: Janet Martin M.D. Electronically signed by: Janet Martin M.D

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 to determine your individual risk factors. 

PVNS Radiation Therapy: Do your research

All I can say is to do your research, remember that each case is different and there aren’t any absolute right or wrong ways to go with treatment. I had my first knee synovectomy for diffuse on 12/14/11. Two months later I had 18 treatments of 200 greys each. radio-oncologist told me RT will decrease recurrence from 40+% down to 15-20%. In her opinion RT in this region will not have any effect on fertility but there is a very small chance of forming a secondary cancer at a later date at the radiated site. The risk was explained to me like this; I have a greater risk of having a life threatening reaction to anesthesia from repeat surgeries than to forming a secondary cancer from RT. I should note that as far as the doctors that I've spoken with and my own research there has never been a reported case of malignant pvns post radiation treatment.  My surgeon and radio-oncologist worked together to map the radiation. Radiation tends to cause scar tissue to form (so keep the joint moving to break it up) and it will most likely make you temporarily very fatigued. My personal opinion is that you will gain more benefits from RT if it is given prior to severe damage from the pvns and multiple surgeries. 

Nodular pvns is more easily contained vs diffuse. Even after the best surgeon has performed a synovectomy on diffuse pvns...there are still microscopic pvns cells that remain. It only takes one of these cells to seed the tumor and get it growing again. This is why radiation treatment is given. The radiation sterilizes the remaining cells so they are unable to reproduce. With that said there is still a chance that the radiation may not hit every last pvns cell. Mapping decides with pin point accuracy exactly what area will be irradiated. If the mapping or actual delivery of the radiation treatment is not exact then a pvns cell can be missed and those cells can reseed the tumor (just like with cancer). Radiation does work but it's only as good as the mapping and delivery of treatment. Even if all of the pvns cells are killed they could return.....there was a reason why they were formed in the first place. Having RT extended my rehab time and has cost me additional time off of work. 

There are risks to every treatment and procedure and it is up to you to determine what you are willing to risk and what kind of treatment that you can afford.  My orthopedic oncologist keeps up to date on the latest research of pvns and recently said “ There isn’t any one type of treatment or surgical approach that stands out as the correct way to treat pvns” They used to have people wait for recurrences before they would administer radiation treatment but now that is changing. They are seeing peoples joints being totally destroyed not only due to the pvns but the damage caused by repeated surgeries. 

The problem with monitoring PVNS is that in some people it grows rapidly and others very slow  with no way of knowing how it's going to react in your system. Note: After surgery scar tissue makes reading MRIs more difficult and can easily be misinterpreted as a recurrence so caution must be taken.  Everyones personal and physical condition differs so please take the time to do your research to find the best options for your situation. I wish you the best. 

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 to determine your individual risk factors. 

Being In Shape Saved my Life

I posted this on the Pvns is Pants site and felt that it was important enough to repost it hear. 

Our struggle is obvious at the time of surgery but it is quickly forgotten or there may be expectations for you to be 100% again...which will never be the case. We will become healthier, stronger and more determined to stay mobile.

People please don't stop working out when physical therapy ends. Let it be a spring board into maintaining or regaining full body health. As I study about pvns I am reminded that it is a a very aggressive tumor that interacts with the state of health of each individual. To make this short. ..cancer patients don't just have their tumors cut out and then forget about having cancer. The ones that do much better than the masses have focused on making their bodies as strong as possible. They do this to not only help prevent a recurrence but to have a stronger ability to recover if it does return.

In 2000 I was in a horse accident resulting in severe spinal cord compression in the neck and quadriparesis. I was told that I needed to accept being in that chair for the rest of my life. I wouldn't accept their opinion and told the docs that I would climb/hike mountains again. I was laughed at. It was a very long road to recovery but I did climb walls and hike the mountains again. Then in 2008 struck with what looked like Guillian Barre Syndrome but in fact was severe bilateral distal end poly neuropathy. Yep you guessed it, nearly lost all movement of legs again. Then Last year I was diagnosed with pvns. This is not a woe is me story for I am the luckiest person in the world.

The point is that statistics don't account for a fighting spirit and we can tip the scale in our favor by taking control of our health. If I hadn't maintained and rebuilt my bodies health each time, I would still be in the chair. Surgeons can only do so much to treat pvns and the rest is up to us. Don't accept your limitations find a way around them. Lets not forget that our families are also effected by pvns and remember to thank your supporters. 

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 to determine your individual risk factors. 

 ·  ·  · Saturday at 7

PVNS Joint Manipulation, Journey recap

22 wks post op and 4 weeks post manipulation. Finally I'm beginning to feel more like my normal self. I received good news today... I'll be finishing with physical therapy next week and I also got clearance to return to work. Steve has been so very supportive and keeps reminding me that my health has to come before anything else.

There have been many parts to this PVNS journey. I began in December with a diagnosis that few doctors understood. Fortunately I have a background in the medical field and I know how to research. Shortly after starting my research of this rare disease.... I realized that it would be so helpful if there had been a research site solely focused on PVNS so I began this blog. As my knowledge grew so did this blog and the many links. I eventually found the Facebook site (PVNS Is Pants) and it has provided much needed support and guidance from other sufferers. It is there that I learned the human factor and not just the cold hard facts and statistics surrounding this disease.  I was very fortunate to have found a top notched ortho oncologist surgeon in my own back yard.  I then had an open synovectomy on my knee for the diffuse form of pvns. Making the decision to have radiation did not come easy. It is costly and has meant 2 additional months off work.  I am one of the very fortunate ones that could afford to be off work for so long.  It hasn't been easy financially or psychologically but it was doable. The RT caused excessive scar tissue to form which required a manipulation under anesthesia which also meant another 6 weeks off of work.  As I said it has been a journey... one that I never want to take again. I have made the decisions to attack this disease as aggressively as I could even though in the end I has meant taking 5 months off of work. After extensively researching pvns I personally feel that your best chance of getting rid of this disease is to kick the shit out of it in the first round of surgery and to destroy it's microscopic remains via radiation therapy. There are no guarantees but I'll take 10-20% recurrance rate vs 40+% any day.  I respect and understand that not everyone has this option for a variety of reasons and may feel differently.

I've been going to physical therapy for four months and I just received news that I only have 2 more sessions.  I can't stress the importance of finding a physical therapist that has compassion but encourages you to push through the discomfort and meet your weekly and monthly therapy goals. Of course I will need to continue going to our gym and working on my stretching and strength.

I continue to have problems with swelling, stiffness and discomfort but it sounds like it is going to be about a year before my knee feels more like normal.