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.

PVNS Estimated Time Of Recovery 2

Journal Of My Recovery From Open Synovectomy, Radiation, Manipulation, False Recurrence of PVNS

SUMMARY OF PVNS

Current Status: 04/25/2013

• Remission since first surgery 12/2011, Partial knee replacement 02/2013, 95% normal, no swelling, pain free

Type of PVNS: 

• Diffuse PVNS, Bakers Cyst of left knee

Surgeons:

• Dr. Amelia DeComas, orth oncologist, PVNS specialist, Core Institute, Phoenix, AZ.,  http://www.thecoreinstitute.com/physicians/amalia-de-comas-md.html
• Dr. John Brown, Sport Medicine/ ortho surgeon, Partial knee replacement/minimal invasive procedure, Sun City, AZ. http://www.thecoreinstitute.com/patient-and-visitor-information/sports-medicine-program/sports-medicine-physicians/john-a-brown-md.html

Diagnosis: 

• 11/2011 per MRI

Surgeries: 

• 12/14/2011, open, frontal synovectomy of left knee
• 04/18/2012, 18 weeks post op. Manipulation Under Anesthesia
• 12/14/2012 Arthroscopic knee surgery (out pt) for possible recurrent pvns, lateral and medial meniscus repair and to address the catching and pain. PVNS recurrence, per MRI, proven wrong; it was scar tissue, need replacement
• 02/07/2013 Minimally invasive, quadricep sparing, partial knee replacement; using the Arthrosurface HemiCAP wave system. PVNS remains in remission

MRI: 

• 11/2011 Initial MRI showing diffuse PVNS in left knee, Bakers Cyst, effusion
• 06/14/2012, 6 mo. f/u- recurrence (false positive)
• 09/28/2012, 9 month f/u, pvns stable (false positive) 
• 12/10/2012, 11 1/2 mo f/u, pvns stable (false positive), Bakers cyst gone

Physical Therapy: 

• 3 weeks post surgery; started

Adjuvant Treatment:

• External Radiation Therapy: 7 weeks post op. 18 treatments, 200 greys each.
• Steroid Injections: 06/28/2012. (unsuccessful)

Detailed Time Line:

November 7th MRI Diagnosis PVNS

November 15 Researching pvns, treatment options, finding surgeon. What will pvns mean to my lifestyle? Making a list of questions for surgeon.

Dec 3 met Dr DeComas, xray taken,  discussed if biopsy confirmed pvns she would switch from arthroscopic to open synovectomy.

Dec 14, 2011, Open front synovectomy left knee, 23rd surgery from other stuff

1 day post op in hospital, worked with PT department on crutch use.  36 hrs post op femoral block wore off. 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. In the middle of the night switched to Dilaudid which controlled the pain but made me nauseated, Reglan & Zofran to control vomiting. pain 6-8. Drain still expelling much fluid.

2 day post op, Johnson Pratt drain pulled in late afternoon.2-3 seconds of intense pain.

3 day post op, discharged from hospital, medication, ice, many pillows useful to secure leg in drive home. Large zip lock bag for nausea. good leg and hip are hurting due to the extra stress.

Day 4 post op, feeling better, pain 4-,5, narcotics, lymph massage, ice, elevate. washed hair in kitchen sink and sponge bath 

Day 6 post op, pain 3-4, take meds prior to getting out of bed in a.m., tempted to use only 1 crutch at home but knee gives out without warning. need to get out of house.

1 wk post op, pain 2-3, 1st regular shower, reduced breakthrough narcotics, bruising is showing now, prefer to use 2 crutches in order to focus on correct strides. Good knee is aching due to the additional stress of compensating for pvns knee.

2 wk post op, pain 2-3,  stabbing pain begins, staples removed, unable to drive, use crutches only on outings. narcotics evening only to sleep. crutches in storage, resumed sex 

3 wk post op began physical therapy, beginning to drive short distance

4 wk post op ROM 56 degrees, frustrated with being gimpy, mentally anxious to return to my desk job but physically not ready. 

6 wk post op ROM 70 degrees, pain 2-3, stabbing pain intermittent, family stresses, financial stresses as bills start rolling in. Driving normal distances. Will make decreased monthly payment arrangements until return to work. 

7 wk post op, Radiation Treatment begins, 18 treatments at 200 greys per. 

8 wk post op 2/13/2012, Ready to return to work managing a physicians office, if not for the up coming RT, ROM 84 degrees, pain spiked  3-4 with increasing activity, good knee continues to hurt due to extra stress. 4 Radiation Treatments done, increasing fatigue, swelling. Rarely take narcotics.

9 wk, 9th RT session, feeling the cumulative effects, pain 3-5, slight burning sensation, vice grip feeling, heat at site, darkening of skin, swelling, fatigue is overwhelming. I had to back off on physical therapy. Compression, elevate, Ice, meds. ROM is still at 84%.

10 wk post op, At this point it's a mental game of keeping your attitude in check and not having too many pity parties.

12 wk post op radiation therapy finished. Physical therapist says one more month of pt. focusing on range of motion.

14 wk post op. My best range of motion prior to radiation therapy was 84 degrees. During radiation I lost 10 degrees, 2 weeks after rt stopped I’m at 81degrees. 

16 wk post op, 4 wks post radiation therapy ROM has been stuck at 81 degrees for 2 wks. Prior to RT ROM 84 degrees, lost 10 degrees during RT= 74 degrees, regained 7 degrees the 1st 2 wks post RT. 

18 wk post op, 04/18/2012, Knee manipulation under anesthesia followed up by aggressive physical therapy 4 times a week. Obtained 110° in surgery, had a reaction to morphine requiring iv benedryl. PT following day rom 110° with help 118°. Healing wise put me nearly back to week 2 post op, pain 5-6.

19 wk post op, 1 wk post manipulation, ROM 113° with help, pain level 4 with nerve pain feeling like a knife jabbing into my knee, with swelling, 10-12 hrs daily in cpm machine for 4 weeks.

20 wk post op, 2 wk 4 days post manipulation. ROM 113°, pain level 3. The nerve pain has stopped and my knee quickly stiffens up if I have it immobile for an hour. It is a very fine line between working it too much or too little. I continue to have problems with swelling. 

25 wk post op, 7 wks post manipulation 6/6/12. Surgeon is pleased with rom @ 113° which means I haven't really lost any rom since manipulation. She is hoping that the rom will continue to increase as the residual pain and swelling decreases  in the next six months, which will make it a year from surgery date. Pain level is 2-3 but decreases with moderate movement. It is a fine line between doing too much vs too little.  I finished physical therapy a couple of weeks ago since I have the motivation to do pt on my own, I  know all of the exercises that I need to do and I have easy access to a gym. My good knee has been hurting for nearly three months but is now constant and hurts nearly as much as pvns knee. Surgeon has ordered mri on pvns knee for  follow up and on the good knee to rule out pvns.

6 month post op follow up MRI 6/14/12. 9 week post manipulation 6/21/12. Per mri new diffuse thickening and rare intratendinous of pvns post surgical. Joint effusion and synovitis noted with additional hypointense focus superior margin which is new, decreased popliteal cyst however multiple foci of hypointensity present diffusely. Residual or recurrent pvns.{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.}
My good knee continues to be swollen and painful mri showed no pvns but it does show chondromalacia and a small effusion.  In pvns knee constant dull pain level 5-7, diffuse swelling, minor swelling in non pvns knee, continuing exercises 3 time wk, ice, elevate. Range of motion at best 110° due to swelling. Pain may be much increased due to pain pump being reduced by 15%. 

06/03/2012, UTI treated with 4 days of Cipro, very very ill

06/28/2012 Bilateral steroid injections in the knees due to swelling and constant pain. Experienced a Cortisone flare increasing the pain for 2-3 days. Had a mild systemic reaction to the steroids causing severe anxiety, moodiness, flushing of the face, slight difficulty breathing and increased heart rate, necessitating Valium to avoid asthma attack and tachycardia... this lasted  about 4 days.  The symptoms are slowly abating and my knees are feeling much better with very little swelling. Do your research prior to having steroid injections, systemic reactions are rare but can be quite severe and far outweigh the benefits of the shots especially if you are menapausal. I'm unable to have the Cortisone shots again due to the reaction. In the end I only had 6 weeks of good pain control and 8-10 weeks of moderate pain control from the injections. The shots are very expensive and in my case totally not worth the expense and side effects.

07/08/2012,  2nd  UTI treated with 10 days Cipro, flank pain, very very ill

07/23/2012,  3rd UTI treated with Cipro, bad flank, abdominal pain, appointment with urologist 08/01/2012. Wondering if the subsequent infects have anything to do with the steroid injections.

07/30/2012, 1 month post steroid injection, pain level prior to steroid injections 5-7 nearly a month later it is now a 2-3, swelling is very much reduced. ROM estimate 120+. Knee continues to stiffen after being sedentary. Felt comfortable going down an escalator for the first time since surgery. The posterior knee cyst continues to enlarge causing minor discomfort. Knee constantly aches but actual pain is finally dissipating. My body feels very worn out probably due to all of the procedures and recurrent UTIs this past year. I had a dream last night that I had returned to work and I was so happy. Someday :-) The last 8 months has been more then challenging and I see it wearing on everyone around me. The battle becomes most fierst at the end.

08/01/2012, I saw the urologist, flow, nuclear study and cystoscopy all came back normal. Been very ill and with less movement I'm not able to exercise my knee so it is stiffening more, heat is still coming off of it but from what I hear it is normal. Difficult to deal with pvns issues and other illness at the same time.

08/21/2012 appointment with new primary care doctor. Diagnosed high cholesterol, low vitamin D, post menopausal. Wow isn't that all a slap in the face and I actually thought I was in good shape for 48

08/29/2012 neurologist appointment, dx primary peripheral axon loss polyneuropathy, brain mri normal.

09/12/2012, 11 weeks post bilateral steroid injections, ROM normal w/o swelling, pain level 4-5 in pvns knee and continue to get that crushing sledgehammer feeling intermittently, pain level 2 in non pvns knee. 

. 

09/20/2012  Two hour appointment with arthritis specialist, 12 vials of blood and very thorough exam

09/28/2012 Nine month f/u mri showing pvns stable, saw PA for Dr DeComas f/u

10/01/2012, 4 month post bilateral knee steroid injections, positive effects totally worn off. Pain 5-7 in pvns knee probably due to tendonopathy and bakers cyst pressing on nerves. Non pvns knee pain level 3. appointment with immunologist today, allergy testing done, immune system checked 11 vials. Increased vit d to 50,000 IU 3x week and given allergy medicine. 

11/04/2012 Returned to physical therapy due to muscle weakness and balance problems from polyneuropathy. Left knee is giving way and locking is making my leg swing way out during strides. Bupivicaine was taken out of pain pump 1 wk ago, now burning back radiating to bilateral legs. Pain 4 in pvns knee, Right knee 2, burning back, legs 6.

11/20/2012 Returned to PCP, cholesterol and blood sugar levels are all within normal levels now since changing diet and increasing activity.

11/29/2012 Pain Pump increase 20%, Bupivicaine put back into pain pump with pump fill. Burning in back and legs has decreased to a 2.

12/10/2012 Follow up mri 11 1/2 mo, showing pvns stable. I can no longer take a normal stride due to catching in my joint which is causing my hip to hurt and the knee pain is increasing. If I bend my knee while sleeping I wake up in pain. Pain is 6-7, Right knee 2,  0% swelling and great ROM

12/14/2012 Arthroscopic knee surgery (out pt) for possible recurrent pvns, lateral and medial meniscus repair and to address the catching and pain. Exactly one year ago to the date I had open synovectomy on the same knee.{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.} No PVNS, repaired meniscus, cleaned up joint, Patello-femoral joint is bone on bone and I will need a knee replacement. Drove car and began PT day 3, Pain steady 4, is a decrease since meniscus repair. ROM 109 after couple weeks of rehab. Used crutches one day. Could have returned to my desk job at 4 weeks but 6 weeks would have been better.


02/07/2013 Minimally invasive quadricep sparing partial knee replacement using the Arthrosurface HemiCAP wave system. Overnight hospital stay with femoral block. Should have stayed 2 nights due to pain when block wore off. Day one/surgery, no drain, ROM 118, walked in hall with PT,  Day two ROM 90, 10 mg oxcycodone q 4 hours, 2 crutches, evening Pain 9+ sobbing, meds adjusted 20 mg q 4 hours, minimal swelling, pain under control in 6 hrs, Day three 15 mg oxcy q 4-6 hrs,1 crutch,  Day four 10 mg oxcy 2 times,no crutches/ was supposed to start PT, Day five, PT begins, 10 mg oxcy 1 time. 1 week, CPM 6 hrs day 110 degrees, no restrictions. Knee moves smoothly and no longer hurts with every movement.


02/23/2013 Two weeks post partial knee replacement. ROM 114, Pain 0, Tightness and very mild aches from surgery, drove car to have staples removed on day 11, continue to use the cpm a couple hours each day, Day 12 began PT, Using both legs to ascend and descend stairs, no noticeable swelling, energy remains low but improving everyday, not ready yet to return to work but I'm beginning to look. 

03/21/2013 Six weeks post partial knee replacement. ROM 118. 4 1/2 wks post op was a passenger on crotch rocket = no discomfort. Pain 0-mild aching minimal activity, 3 from mild swelling(walking 3 miles) full returned to activities except jogging and kneeling which doc wants me to wait until 3 mo post op. Energy hasn't returned yet. I would be ready to return to office work at this point if not for other issues. Extremely pleased with this procedure. Knee feels like better then my biological knee. Severe bone on bone nerve pain 0% gone immediately post op. 

07/01/2013 Time to call the surgeon and have her order my 6 month follow up MRI. Keeping my fingers crossed for good results. An update on my PVNS knee; It's been 6 months since my partial knee replacement and I'm doing wonderful. Little to no pain, 2 on the pain scale if slight swelling is present. Range of motion is normal and I don't think about my knee unless I need to kneel down, in which case I am extremely careful and put little pressure on it. My PVNS leg is still a little weak so I'm still careful on the stairs. The quadricep muscle still tightens up and aches, since open synovectomy.  

08/13/2014 Update: I remain nearly three years PVNS Free. MRI in December is now showing extensive chondromalacia (arthritis) in the medial and lateral aspects of my knee, less than a year after the partial replacement was done. This is disappointing since I will require a revision of my partial replacement into a total knee replacement in the near future. I suspect the having the pvns and or the radiation therapy may be playing a role in accelerating cartilage destruction, since I had no signs of arthritis prior to the synovectomy in December of 2011. 

RT...Questions To Ask About PVNS Radiation Therapy

Questions To Ask Your Radiology Oncologist

1.   Why is radiation a good or poor choice for me?
2.   How many PVNS patients have you treated?
3.   What are my chances of recurrance with or without radiation treatment? 
4.   How does radiation effect the PVNS and healthy cells in my joint? 
5.   What dose of radiation will you be using and how/why did you select that dose?
6.   How often and how long will I receive radiation treatment?
7.   What are the chances that radiation will cause a secondary cancer?
8.   Will the dose of radiation have any effect on fertility?
9.   What kind of side effects will I experience during the treatment?  Fatigue, etc
10.   What is the process for setting me up for radiation and how long will it take?
11.   Will I need a post surgical MRI or CAT scan?
12.   What is mapping and will my surgeon be participating it?
13.   If I have radiation now will I be able to have the same joint radiated in the future?
14.   What is your follow up care plan?
15.   Is there anything that I can do to reduce adhesions from forming?
16.   How much will my treatment cost and do you participate with my insurance?
17.   What is the best time of day to schedule my appointments to avoid long waits?
18.   If I experience treatment complications who do I call and who handles it?
19.   How will my joint be immobilized to prevent movement during treatment?
20. 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 Pain Management

It's my opinion that anyone dealing with long term pain issues should have a pain management doctor. There are many medications and treatment modalities that can be used to control pain much better than narcotics. Before turning to a narcotic do your research and find out the different modalities, devices and treatments being used for pain control. You may just be surprised. "Recent research has shown that the spread of pain receptors near the site of tissue damage is controlled by a chemical known as nerve growth factor (NGF)." Tanezumab is an injectable nerve growth factor inhibitor that is in phase 3 clinical trials for osteoarthritis. To learn more about pain management go to http://www.guardian.co.uk/science/2011/sep/04/chronic-pain-drugs-medical-research

The bad thing about narcotics is that our bodies get used to them leading to increased dosages in order to have the same pain relief effect...this causes dependence. Eventually the narcotics quit relieving pain because you can't bump up the dosage any higher. They can also mess with the receptor sites and cause the feeling of increased pain when there really isn't any physical cause.  It can easily become a vicious cycle and many people form psychological addictions along with the physical addiction that you will form if narcotics are taken frequently and for an extended period of time.

Staying healthy, active, ice and elevation has helped reduce the pain far more than narcotics. Narcotics have a place but they must be used sparingly. You may be saying but "you don't understand how much I hurt" I was placed in a coma because my heart couldn't handle the extended period of time and the level of pain that I was experiencing with a neuro condition in 2000. I was on max dosages of IV narcotics. Months later my life depended on having a port placed in my chest. They couldn't numb me because of the level of narcotics my body was used to. I felt every slice of the scalpel and every stitch. This was a very difficult lesson to learn. I do understand pain beyond pain. Save the narcotics for when you really need them and don’t use them as your first line of defense in managing 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.

PVNS Radiation Post TKR

Recently there was a question asked if you can have radiation treatment after a TKR? My orthopedic oncologist said that you can have radiation treatment after a TKR. She said generally they would do it to control symptoms vs controlling the disease because their isn't as much of a natural joint that the pvns can harm. The other question posted was “ how can pvns return after a TKR?” During a TKR they don't take out the entire joint capsule (synovial tissue) because you still need it so your joint will function. There is still a possibility that PVNS could be in the remaining tissues but the chances are reduced.

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 Cortizone Injections

06/28/2012 

I saw my ortho-oncologist surgeon today and received steroid injections into both knees. The first time she attempted to get the needle in my pvns knee it wouldn't go through the scar tissue and she could only inject a very small amount of medication, pain scale 9.  I had her try again in a different location and it hurt but only lasted 5 seconds, pain scale 3-4. She then injected my non pvns knee that's been hurting and that was a breeze. She gave me a hug after she was finished. The wow factor. 

Bilateral steroid injections in the knees due to swelling and constant pain. Experienced a Cortizone flare increasing the pain for 2-3 days. Had a systemic reaction to the steroids causing severe anxiety, moodiness,  flushing of the face, slight difficulty breathing and increased heart rate, necessitating valium to avoid asthma attack and tachycardia... this lasted  about 4 days. . The symptoms are slowly abating and my knees are feeling much better with very little swelling. Do your research prior to having steroid injections, systemic reactions are rare but can be quite severe and far outweigh the benefits of the shots. I'm unable to have the Cortizone shots again due to the reaction. 

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.

Using Ice Correctly: Making Ice Packs

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.

How to make your Own Reusable Gel Type Ice Packs

Type 1:

1 cup rubbing alcohol
2 cups water

Food coloring- to identify it as an ice pack and not to be consumed.
2 Ziploc Freezer Bags

Pour liquids into freezer bag, remove air and seal bag. Double bag mixture. Place in freezer and reuse as needed (nice and slushy!). If you have a bag sealer even better.

Type 2:

2 cups water

1/3 cup vodka (80 proof)

Food coloring (any color)...to identify it as an ice pack

2 Zip Lock Freezer Bags, may duct tape edge for added security 

Type 3:

Frozen Beanie Babies will stay cold about 20 minutes. great for kids.

TIPS: 

When taking packs from the freezer to use, wrap in towel first before applying to body. If they freeze too hard and aren’t slushy, simply allow them to melt and then add more alcohol.

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 Radiation, Recurrence Update

Stats on external radiation are looking good and decreasing recurrance to 15-20% vs 45% in diffuse pvns. That is why an increasing amount of physicians are utilizing it early on in pvns treatment. We know from the stats on malignant tumors the area that the radiation actually dose hits will sterilize the cells so they can't reproduce, but then again treatment is only as good as the mapping and dosage which is not only a science but an art. Radiation does not come without it's own risks and consequences. 

In my case I over healed and had to be knocked out again for a manipulation to break up the adhesions. It now feels like there is a tight band around my knee and it stiffens easily. In all fairness you can get the same thing from just having an open synovectomy like I had, so I'm not sure how I would feel if I didn't have radiation. Radiation also increases recovery time, for me it was 6 weeks before I had my normal energy level and it did add onto physical therapy time. The tab for my RT was $26,000 thank goodness for insurance but I still had copays.

The surgeon and I again discussed that it was a right decision to get RT in my case since it was diffuse throughout my knee combined with my past medical history. They removed all pvns that showed in the mri and all that was visible, but it's impossible to get out the microscopic cells. Unfortunately it looks like there are now new areas of pvns. She isn't convinced that it is pvns on the tendons and if it is the only thing that they could do is graft a new tendon into the knee which would cause more problems then the pvns at this stage. Another new area that it is showing is almost into the muscle which it won't damage the joint. There are other areas that are probably pvns and time will tell. My joint is still good but in my case it looks like the pvns may acting very very aggressive.  So yes RT was a wise decision in my case. My next mri is in 3 months. Hind site is 20/20. The dice could have just as easily rolled the opposite way and I would never know if I caused unnecessary damage to my knee. Everything is a roll of the dice when making treatment decisions about pvns. Remember certain effects from radiation and chemo can not be reversed.

Update: 08/2014 I'm now approaching three years of being PVNS Free. 


(During 12/14/2012 surgery discovered pvns had not recurred and the mri was showing scar tissue)

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 Doctor Appointment Tips

Tips to make your doctors appointment fast and efficient

Here are some ways to help ensure you utilize your time efficiently, accomplish your goals and receive the best medical care possible.

Making Your Appointment:

1. When making your appointment confirm that the office takes your insurance.
2. Ask how much time is reserved for a new patient appointment and also follow up appointments. If you have multiple problems  to discuss at a routine visit let the scheduler know not to double book during your appointment time.
3. Be accurate as to why you need to see the doctor. Otherwise the appropriate time may not be reserved or the necessary equipment to evaluate you may not be available.
4. It greatly increases your chances of being seen on time if you ask for the first appointment in the morning or the first appointment after lunch. This way you are not waiting for the physician to finish with other patients.
5. Complete new patient forms before appointment. Ask if the office has a website were the forms may be printed out. If not ask for them to fax or mail the forms to you. This way you will have access to all the information needed to fill them out completely and you won't be wasting your appointment time filling them out. Hand these forms to the receptionist when you sign in so she may add them to your chart.
6. Make a prioritized list of goals and questions prior to appointment and make a copy for the physician. This allows both of you to focus on your concerns and not forget anything that is pertinent. Try to limit your goals to three main issue so there is time to  evaluate, fully discuss and come up with solutions. If you have more then three main issues it may require another appointment.
7. Keep a health journal - Track your medications, supplements, diet changes, symptoms, illnesses, etc. could help your doctor when he or she is trying to investigate your health or prescribe medications.
8. For new patients: One week prior to your new patient appointment sign a "release of medical records form" a the new office for each doctor that they need to obtain records from. This gives your new doctor a chance to review your case prior to your appointment. Two days prior to your appointment confirm that the new office has received your medical records.

Items To Bring To Your Appointment:

1. Bring completed new patient forms or any forms that you may need to be filled out.
2. Bring medication bottles, creams, misc. to the apointment. Many people are unable to remember the actual medication names, dosages and instructions or the physician that prescribed them.
3. Bring your prioritized list of goals and questions with extra space to write notes and a copy for your physician.
4. Bring a recording device if you prefer to record your visit instead of taking notes.
5. Bring your health journal.
6. Bring test, biopsy, MRI, Xray, lab reports ordered by other physicians if you have them.
7. Bring a friend- Doctors provide a lot of information quickly. It is easy to forget what is said.

Checking Into Your Appointment:

1. Before you leave for an appointment, call to find out if the doctor is running late, or ask the minute you walk in the door. If you are over 15 minutes late the doctor may not be able to see you.
2. When checking in have your insurance card with you and ready to present. You are responsible to know your benefits. If your card has not arrived then get your insurance information before the appointment.
3. If you need forms to be completed, present them at check in so the staff can start to fill them out. It is your job to bring the forms that you need filled out such as workman's comp, disability, etc. There may be an extra charge for the form unless it was the entire reason for your visit. 
4. If you have long forms to be completed by the doctor the staff will give you an estimate of cost and time required to complete. 
5. If you think you may need to have a urinalysis done ask the receptionist if the doctor has requested one. this saves you time by having the results processed before being seen by the doctor. If the doctor has to wait for the results he will see another patient and then return to you. thus causing you to wait for the doctor twice.
6. Pay your copay and schedule your follow-up appointment if applicable while in the waiting room. This will save you time after your appointment.

During Your Appointment:

1. Remember the doctor only has about 8 minutes to assess you needs, examine and provide treatment.
2. Provide the doctor with a copy of your prioritized list of issues and questions.
3. You may ask the doctor if he minds if you record your discussion vs taking notes.
4. Be clear about what you want the doctor to do, such as refer you to a specialist, prescribe a different medication or go over test results. 
5. Be honest about what you think may be causing the problem and don't be embarrassed. Your doctor has seen and heard it all before.
6. Ask the doctor to repeat anything that you don't understand.

Proper Medical Office Etiquette:

1. Talking with the doctor about unrelated issues such as family, pets, latest drama is very expensive and makes other patients wait longer. It is a waste of your appointment time and takes away from the time that the doctor has to focus on your medical issues.
2. Most doctors only have approximately 8 minutes of actual time that they can spend with you. The rest of their time is tied up in administrative duties related to researching, writing scripts, ordering tests and charting.
3. If you are a family member or friend accompanying the patient, do not "steal the spotlight" by asking questions about yourself.
4. Don't ask to have your other child checked out.
5. Don't talk on the cell phone in the waiting or exam room. It is very annoying to others
6. Treat the receptionist, medical assistants and nurses as an extension of the doctor.
7. Every member of the office is committed to providing you with the best care.

These Are The Average Time Goals Of a General Medical Office:

Step                                                                                Time Spent

Patient arrives and checks in: 1  minute

Receptionist verifies insurance and collects copays: 4  minutes

Patient wait in waiting room: 13 minutes

Patient is taken to exam room, vitals and intake are done: 5 minutes

Patient waits in exam room: 7 minutes

Physician examines and treats patient, charts, scripts: 8 minutes

Patient checks out: 3 minutes

Total Cycle Time:  41 minutes

Total time spent waiting: 20 minutes

Total time spent with nurse and or physician: 13 minutes

Total time spent with office administrative duties: 8 minutes

Your PVNS Case Is Unique

We all have our personal preferences and stories but we must remember “what is right for one person may not be the best treatment for another.” Don’t rely totally on others information and interpretations of data. Do your own research to ensure that you obtain the best medical care possible. Remember that each case is different and per my ortho oncologist “ There isn’t any one type of treatment or surgical approach that stands out as the correct way to treat pvns.” However, they are seeing patients joints being destroyed not only due to the pvns but the damage caused by repeated surgeries. My personal opinion is that if you choose to do Rt you will gain more benefits if you have it done prior to severe damage from the pvns and multiple surgeries. 

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. RT is used to sterilize the microscopic pvns cells so they are unable to reproduce. Every procedure has risks and the difficult part is determining what risks that you are willing to take. When your doctor suggest a a treatment plan ask him why he believes this particular treatment will be best for you. Everyones personal and physical condition differs so please take the time to do your research to find the best options for your situation. 

With all of that said I chose external radiation vs internal radiation because they are able to direct the external radiation exactly (and I mean exactly) where they want it vs the more generalized radiation of the entire joint. Another point to remember is that each body part has a life time limit of radiation that it can be exposed to. I didn’t take this into account when I decided to have RT treatment. It decreased my chances of recurrence to 20% but it seems that may not have been good enough. The mri suggests findings that are consistent with pvns at the 6 mo f/u mri so it may have recurred. (found out 6 mo later that it did not recur but it was scar tissue sowing on the mri) I see the surgeon on Thursday to discus our plan of action since it also now appears to be on the tendons. RT does work but again it only takes one stupid microscopic cell to start it all over again.

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.