The information on the Blog Posts reflects my opinions, personal suggestions and is not intended as medical advise. The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images and information, contained on or available through this web site is for general information purposes only. PVNS Success makes no representation and assumes no responsibility for the accuracy of information contained on or available through this web site, and such information is subject to change without notice. You are encouraged to confirm any information obtained from or through this web site with other sources, and review all information regarding any medical condition or treatment with your physician.

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PVNS Success is not responsible nor liable for any advice, course of treatment, diagnosis or any other information, service or products the you obtain through this web site.


Sunday, June 2, 2013

PVNS and GCT-TS Study: Adam Weinberger

Adam WeinbergerMay 30, 2013 at 1:46 PM
Dear CJ,

I am contacting you about an important PVNS and GCT-TS study that may advance research! PVNS and GCT-TS tumors are rare and input from participants with these tumors is very important.

We are conducting this interview study so that we can learn from you and better understand the symptoms of PVNS or GCT-TS and the impact that these symptoms may have on your life.

You may be eligible to participate in the study if;
• You are 18 years of age and older
• You are able to read and speak English
• You have or had a PVNS or GCT-TS tumor and this can be clinically confirmed by your physician

The study involves an interview lasting about 60-90 minutes, no treatments are given as part of this study. If you are eligible and participate in this study you will receive $100 for your time.

If you would like more information about the study, please call 866-766-2344 and ask for Kelly McQuarrie or Adam Weinberger.

Please feel free to share this invitation with others that you may know who have PVNS or GCT-TS who may be interested in participating in the study.

Thank you for considering this important research study!

Adam Weinberger
Research Assistant
Outcomes Research
United BioSource Corporation
7101 Wisconsin Avenue, Suite 600
Bethesda, MD 20814
Phone: +1 240 235 2502 ext. 62502
Cell: +1 301 219 8683
Fax: +1 301 654 9864
Email: adam.weinberger@unitedbiosource.com

Thursday, March 28, 2013

Success with Adjuvant PVNS Radiation Treatment, Story

Why Did I Choose To Have Adjuvant Radiation Treatment

 I had my first open knee synovectomy for diffuse PVNS on Dec 14, 2011. My surgeon said she had removed all visible pvns, but that it only takes a single PVNS cell to reseed and begin the process all over again. I was uncomfortable with the high rate, and all too frequent rapid development of PVNS recurrences; after patients were told by their surgeons that "all visible PVNS was removed."

I read many studies comparing the short and long term statistics of  chemotherapy, and radiation therapy as an adjuvant treatment for diffuse pvns. I quickly discovered that I wasn't a candidate for chemotherapy due to having polyneuropathy, so the only other adjuvant treatment modality available to me was radiation treatment. 

Radiology Oncologist Assessment

After the bulk of my RT research was completed, I constructed a {list of questions} to ask my radiology oncologist, at my consult appointment. The answers to these questions are case specific, but the following is in general.

With just an open synovectomy, my chances of recurrence was in the high 40 percentile. With radiation treatment the PVNS recurrence would be reduced to the mid-teen percentile. I heard rumors floating around about the dangers of RT and became concerned about the possibility of forming a secondary cancer, from external beam radiation treatment. I was assured by my radiology oncologist and years worth of research, that this fear was totally unfounded. There has never been a reported case of secondary cancer from PVNS radiation treatment. 

The level of risk as explained by my radiology oncologist..."you are much more likely to suffer from a serious adverse reaction to anesthesia during surgery than to experience a secondary malignancy caused by PVNS RT." There are complications and risks associated with all treatments including repeated surgeries.

Unfortunately, many of the physicians who are damming radiation treatment for PVNS have some type of association and or financial interest in promoting chemotherapy drugs and trials. I have kindly asked some of these physicians what they are basing there opinions on, and each has declined to provide any type of answer besides a personal opinion. 

I'm neither for or against RT or chemo in the treatment of PVNS, because both can have serious side effects. Recent studies are showing that they have nearly the same effectiveness. There are additional concerns that should be looked at seriously when using a systemic drug on a disease that is confined to one joint. Only a personal risk assessment from a oncologist or radiology oncologist will be able to provide you with a personal risk. A treatment that may b low risk for one person may pose a higher risk for another patient.

Radiation Therapy Experience

On my seventh week post synovectomy, I decided to have 18 external radiation treatments of 200 greys each, Monday - Friday for 3 1/2 weeks.  

2 RT Week: post 4 treatments, ROM 84º, pain 3-4 with increased activity, increasing fatigue and swelling.

3 RT Week: post 9 treatments, ROM 84º 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 due to the swelling interfering with proper positioning of my knee during RT delivery. Compression, elevation, ice, meds. 

4 RT Week: post 14 treatments, ROM 74º. At this point it is a mental game to keep your attitude in check and focused on the long term goal. I'm mentally and physically tired and my knee is now more uncomfortable. 

5 RT Week: post 18 treatments, ROM 81º, finished RT. It is now 12 weeks post op and I have physical therapy 3-4 days a week working on ROM.

16 wk post synovectomy, 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 week post op my range of motion is stuck at 81º and I am now having  a knee manipulation under anesthesia followed up by aggressive physical therapy. This procedure worked well in breaking up scar tissue and regaining ROM 113º.

PVNS and Pain Free 15 months post synovectomy, RT, manipulation, false recurrence and arthroscopy, several months of physical therapy, partial knee replacement with ROM now at 118º.

In summary I feel that I attacked this disease as aggressively as I could with positive effects. I know that the radiation treatment damaged my knee in the sense that it caused additional scar tissue. Hopefully I will remain in remission but will have MRIs done every six months and eventually yearly for the rest of my life. The partial knee replacement will make the MRIs even more difficult to read. 

Making The Right Decision

I will be very cautious in approaching any surgery for a possible recurrence of pvns, since I've already had one false positive recurrence on the MRI reading (scar tissue). Fortunately my arthroscope exactly one year after the synovectomy was also performed for a torn meniscus repair, and that's when they discovered that I needed a knee replacement. When I was under the impression that there was a recurrence of the pvns...I questioned my RT decision. However, I feel strongly that it was worth decreasing my recurrence rates by having the radiation treatment, and I would do it again. Only time will tell if I will remain in remission. One year after my open synovectomy I had a partial knee replacement.  I am now pvns and pain free, but I will never know for sure if RT has played a role in my positive outcome or not. Statistics point to yes, but there are others that have had less than satisfactory outcomes. 

Nearly a year after making my decision to have external radiation treatment after my first synovectomy....I'm seeing a trend toward more aggressive treatment on the onset of pvns and not waiting until there has been a recurrence. I honestly don't know if this is a good thing or not. Once again only time will tell. Obviously my thoughts were to throw every weapon  at it, to kill it off on the initial assault, and so far it has worked for me. I can't say this is the right route for others because there are just too many variables in each case, and I'm not a doctor. The information that I share, are links to empirical studies, otherwise it's just my personal opinion based on my experience, and it should not be taken as medical advice. 

Friday, March 15, 2013

How To Avoid Infection After PVNS Surgery

Click here to read a good article about staph infections.

In 2008 I nearly lost my foot due to a MRSA (staph) infection that entered through a tiny scratch. You may realize that the hospital is a harbor for life and limb threatening bacteria, but have you thought about how they could find their way into your body?

First of all, studies show 25-30% of people in the general population carry staph without any signs or symptom and this statistic is much higher in hospital personnel.

Secondly, staph is easily passed on through physical contact, or even when people touch the same objects and surfaces, like silverware, towels and railings.

Precautions that I take: 
  1. Shower with Hibiclens (helps to get rid of staph bacteria on the skin) prior to surgery and continue until wound is completely healed. 
  2. Be conscientious of what has been touched by others, food trays, blankets, pens, crutches, physical therapy equipment, etc. 
  3. I’m not a germophobic but honestly you can’t wash your hands enough. Staff should always wash their hands (where you can see) prior to touching you or your items. If an item falls on the floor be aware that it is now contaminated by germs that hitchhiked on the soles of everyones shoes. 
  4. Upon arrival home, I immediately shed any clothes that I had on at the hospital, wipe down my possessions and sponge bath with Hibiclens.  
  5. Everyone becomes anxious to take a real shower after surgery, however, getting an incision wet "before the exterior incision is totally healed" puts you at great risk of infection.

I haven’t had any problems with infection since I began taking these precautions.

Wednesday, March 13, 2013

Wonderful Exercise Site

Body Building.com is an informative Exercise Site were you can choose videos on stretching, exercise by body parts and even track your work outs. This is my go to site when I'm not in physical therapy.

Wednesday, March 6, 2013

References For Children with PVNS

I've been working on finding childhood cases of pvns for a few weeks now and wanted to post some of my findings. I've gotten up to 2007 and in the next few days I will post childhood references from 2007 to current. My hope is that this will help with your individual research into the different types and ages of childhood PVNS. 

Numerous incidents of PVNS occurrence within the pediatric population have been well documented, yet it has been stated that PVNS occurs primarily between the ages of 20-50. As I reviewed articles with the terms infant, pediatric, adolescent and teenage populations, I found the following references. Based on a meta-analysis of reports between 1968 and 2007, the age range was found to be between 8 months and 17 years.

  1. Maheshwari A, Muro-Cacho C, Pitcher D. Pigmented villonodular bursitis/diffuse giant cell tumor of the pes anserine bursa: a report of two cases and review of the literature. Knee 14:402–407, 2007. 
  2. Freedman BA, Lin DL, Tis JE. Pigmented villonodular synovitis of the calcaneocuboid joint in an 11-year-old child with subtalar coalition. Foot Ankle Int 28(4):511–515, 2007.
  3. Brenner JS. Pigmented villonodular synovitis causing painless chronic knee swelling in an adolescent. Clin Pediatr 46(3):268–271, 2007.
  4. Sekiya H, Ozawa H, Sugimoto N, Kariya Y, Hoshino Y. Pigmented villonodular synovitis of the elbow in a 6-year-old girl: a case report. J Orthop Surg (HongKong) 15(1):106–108, 2007.
  5. Mukhopadhyay K, Smith M, Hughes PM. Multifocal PVNS in a child–followed over 25 years. Skeletal Radiol 35:539–542, 2006.
  6. Tavangar SM, Ghafouri M. Multifocal pigmented villonodular synovitis in a child. Singapore Med J 46(4):193–195, 2005. 
  7. Cussotti S, Ingrosso G, Parola PG, Mellano D, Linari A, Pucci A, Di Rosa G. Tendinous villonodular synovitis: a rare case of recurrence during childhood. Chir Organi Mov 89(2):167–170, 2004.
  8. Saulsbury FT. Pigmented villonodular synovitis of the knee in a 9-year-old child. South Med J 97(1):80–82, 2004.
  9. Eckhardt BP, Hernandez RJ. Pigmented villonodular synovitis: MR imaging in pediatric patients. Pediatr Radiol 12:943–947, 2004.
  10. Aydingoz V, Leblebicioglu G, Gedikoglu G, Atay O. Pigmented villonodular synovitis of the elbow in a 6-year old girl. J Shoulder Elbow Surg 11(3):274–277, 2002.
  11. Pill SG, Adams SB, Hubbard AM, Carpentieri DF, Dormans JP. Soft tissue mass of the second toe in an 11-year-old boy. Clin Orthop Relat Res 401:265–270, 2002.
  12. Bruecks AK, Macaulay RJ, Tong KA, Goplen G. Nov 2000: 13 year old girl with back pain and leg weakness. Brain Pathol 2:263–264, 2001.
  13. Rosenberg D, Kohler R, Chau E, Bouvier R, Pouillaude JM, David L. Pigmented villonodular synovitis. Diffuse and localized forms in children. Arch Pediatr 8 (4):381–384, 2001.
  14. Kaneko K, Nakahar D, Tobe M, Iwase H, Inoue Y, Ohbayashi O, Kurosawa H. Pigmented villonodular synovitis of the ankle in an adolescent. Int Orthop 23:234–237, 2000.
  15. Vedantam R, Strecker WB, Schoenecker PL, Salinas-Madrigal L. Polyarticular pigmented villonodular synovitis in a child. Clin Orthop Relat Res 348:208–211, 1998.
  16. Ganley TJ, De Ruiter CJ, Dormans JP, Meyer JS, Collins MH. Ankle pain and swelling in a 10-year-old girl. Clin Orthop Relat Res (348):282–284þ287–289, 1998.
  17. Hansen P, Nielson PT, Wahlin AB. Pigmented villonodular synovitis of the extensor tendon sheaths in a child. J Hand Surg Br 13(3):313–314, 1998.
  18. Hoeffel JC, Mainard L, Champigneulle J, Claudon M. Pigmented villonodular synovitis of the wrist in childhood. Clin Pediatr (Phila) 36(7):423–426, 1997.
  19. Minisola G, Porzio V, Ceralli F, Grillo LR, Porzio F. Polyarticular pigmented villonodular synovitis associated with multiple congenital anomalies: a case of noonan-like/ multiple giant cell lesion syndrome. Clin Exp Rheumatol 14(2):207– 210, 1996.
  20. Kay RM, Eckardt JJ, Mirra JM. Multifocal pigmented villonodular synovitis in a child: a case report. Clin Orthop Relat Res 322:194–197, 1996.
  21. Meehan PL, Deftari T. Pigmented villonodular synovitis presenting as a popliteal cyst in a child. J Bone Joint Surg Am 76(4):593–595, 1994.
  22. Kang GH, Chi JG, Choi IH. Pigmented villonodular synovitis in the sacral joint with extensive bone destruction in a child. Pediatr Pathol 12:725–730, 1992.
  23. Soifer T, Guirguis S, Vigorita VJ, Bryk E. Pigmented villonodular synovitis in a child. J Pediatr Surg 28(2):1597–1600, 1993.
  24. Curtin WA, Lahoti OP, Fogarty EE, Dowling FE, Regan BF. Pigmented villonodular synovitis arising from the sheath of the extensor hallucis longus in an eight-month-old infant. Clin Orthop Relat Res 292:282–284, 1993.
  25. Bruns J, Schubert T, Eggers-Stroeder G. Pigmented villonodular synovitis in children. Arch Orthop Trauma Surg 112(3):148–151, 1993.
  26. Green A, Sutherland W, Trafton PG. Localized nodular synovitis of the ankle: a case report. Foot Ankle 12(1):47–51, 1991. 
  27. Givon U, Granel A, Heim M. Pigmented villonodular synovitis. Arch Dis Child 66:1449–1450, 1991. 
  28. Matejicek M, Dungle, Trnka V, Havelka S, Hoza J. Multiocular pigmented villo- nodular synovitis in a child: a case report. Acta Universitatis Medica 37(1-2):31–36, 1991.
  29. Aghasi MK, Robinson D, Reif RM, Halperin N. Pigmented villonodular synovitis of the talus in a child. Foot Ankle 9(3):139–142, 1988. 
  30. Wendt RG, Wolfe F, McQueen D. Polyarticular pigmented villonodular synovitis in children: Evidence for a genetic contribution. J Rheumatol 13(5):921926, 1986. 
  31. Walls JP, Nogi J. Multifocal pigmented villonodular synovitis in a child. J Pediatr Orthop 5:229231, 1985.
  32. Wagner ML, Spjut HJ, Dutton RV. Polyarticular pigmented villonodular synovitis. AJR 136(4):821823, 1981.
  33. Lindenbaum BL, Hunt T. An unusual presentation of pigmented villonodular synovitis. Clin Orthop Relat Res 122:263267, 1977.
  34. Leszczynski J, Huckell JR, Percy JS, LeRiche JC, Lentle BC. Pigmented villonodular synovitis in multiple joints: occurrence in a child with cavernous haemangioma of hip and pulmonary stenosis. Ann Rheum Dis 34:269272, 1975.
  35. Bobechko WP, Kostuik JP. Childhood villonodular synovitis. Can J Surg 11:480486, 1968

Saturday, February 23, 2013

What I Would Have Done Differently with PVNS

This question was asked in the pvns is pants site "Open synovectomy or TKR?" My response if only I had known what I know now. 

Newly diagnosed 11/2011via mri, Game Plan:  Begin with arthroscope to confirm via intra operative biopsy, extensiveness of pvns determined they had to revert to an open syno.

Per mri I wouldn’t need a replacement for several years if at all. They had to have know when doing the syno that I would be left with severe arthritis. I don’t believe this was any real surprise to the surgeon in December during the arthroscope.

This is where I wish that I had discussed knee replacement in the event that the synovectomy would leave me with little to no cartilage. If it had been determined that I would be left with severe arthritis then I would have had them fix the meniscus, excise the pvns that they could with the arthroscopic procedure and close me up. I still would have done radiation but then I would have had the replacement done as soon as I was healed. 

This strategy would have save me from needing a manipulation 4-5 mo post op/starting me all over in the healing process.  It also would have saved me from an additional arthroscopic surgery to fix the meniscus. Not to mention the financial hardship of being  off work for over a year due to severe pain and the inability to do my job.

With all of the said I had a partial knee replacement two weeks ago and for the first time in over a year I am not taking narcotics or anything else for pain because it is completely gone. Note; with a partial they don’t cut through the quad muscle like with a tkr and open synovectomy. This cuts down on discomfort and increased rehab time. 

TKR is not a cure for pvns although it does seem to show that it may decrease the recurrence rate. Again there are risks no matter what you choose. I found that the open synovectomy was by far a much longer, more difficult and painful recovery than the arthroscopy and the partial replacement. I would never choose an open syno knowing that I would shortly need a TKR. When I was in rehab from my open syno I was very slow in my recovery compared to the people who had TKR. There are many peeps on this site that have had TKR and could direct you better than myself. Best of luck and well wishes. 

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.

Friday, January 18, 2013

PVNS, Hospitals Are Not Created Equal, TKR or Partial

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.

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 started 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. Unknowing at the time 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. 

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'm asked if I'm ready to sit in a chair. "well I guess so." So they transferred me to stage two, but I wasn't in stage 2 for over 5 minutes when they are asking if I'm ready to go home. Try to understand I'm drugged and well home sounds good. The nurse hands my husband some papers and asked if she needed to call transportation or if I could walk. I just had knee surgery but what the heck. So we are on the way home and 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 is important to check out the hospital and make sure you are comfortable with it.

While I was 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.

Well 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. Now I had a few questions for my surgeon so I made an appointment. 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 surgeon. First of all I had a list a questions that I presented. I don't ask non pertinent or stupid questions so this is the way that I 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 and thoroughly knew my case, 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. 

Long story short he presented a couple 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. So I will be having a resurfacing in a couple weeks. I also learn about many other procedures and even up and coming 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.

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.